Calming the anxiety was my major lesson. I’m 4 months in now. Feeling better now... still have ups and downs. I still feel quite woozy and weird. Feels kinda like I’m laying on a boat. But it feels okay during the day now! Evenings are worse. I can’t wait to get over this. Never again will I take my health for granted.
Missmj X How do u feel? Never ever take anything for granted 6 months in n I can’t wait for the symptoms to go away! The swaying balancing rocking back n forth is the worse feeling! Only 50 percent better hope to get to 100
I've watched all of your videos and wept through each one, as I see me in you. I am so grateful that you took the time to give those of us that are suffering some positive hope and buoy our spirits when we have little to go on and no real resources for dealing with the fear and other psychological aspects that come with this sudden, devastating and debilitating illness. , too, was formerly very athletic and have had some injuries and traumas that have proven life altering. This vestibular neuritis is like another nail in the coffin for me, as I was JUST recuperating from back injuries and beginning to start back into a fitness program to try to become the healthy lady I was. Then I was struck suddenly with vertigo. I am in week 11 now. I feel fairly grotesque most days. I have some underlying conditions that prevent me from taking SSRI uptake types of meds for the depression but have found one anti anxiety med that I can tolerate. I am also going to my 4th vestibular rehab therapy session today. So far, I have felt worse instead of better. I have been to emergency a number of times with brutal symptoms and due to being given anti depressants that were not metabolized by my liver. Very scary! I have hope that I will recover but have the same fears, depression, anxieties and ongoing symptoms that you relay, as well as a few other thrown in for good measure. For me, I cry every morning before I open my eyes as I am terrified to get out of bed, expecting that I will be just as sick and useless as the day before. So far, this has proven to be the case.But I know that it WILL get better! Finding your videos has bolstered my belief in that! I appreciate your warmth and choosing to share the good in this seemingly relentless and hopeless situation. We need that. We need to know that, in some cases, this can be fixed! With heartfelt thanks and appreciation! Regards., Leslie (Graehme's girlfriend using his youtube account!) from London Ontario Canada!
Aww, Leslie. Honey, keep on keeping on. Cry cry cry and then get out of bed and do the things that make you feel terrible until they don't. VRT made me feel worse initially, but just remember that's a good thing. It means youre pushing yourself. Doing the stuff that makes you feel sick. Eventually, it won't. you just have to keep pushing. And crying. And breathing. Find sometime small each day that brings your joy. Good luck.
@@lindsey8081 Thank you very much! I have plans to see 3 more specialists in the hopes that we can nail down the exact cause of this sucker! I will NOT let this take over my life as I have too much to do and so many fun things I want to accomplish! I will post here how things work out for me. Fingers crossed! And thank you for providing hope to others. Regards, Leslie
same here, wept through all her videos. As I couldnt articulate it the way she did. I pray from the deepest corner of my heart that everyone whos dealing with this may defeat it soon.
Lindsey, thank you for this video. I was just diagnosed with Vestibular Neuritis and will be starting physical therapy. This is so debilitating and very frustrating while waiting to figure out what was happening. It is so hard to explain to others who have not experienced this, how you feel. Thank you again for this video.
Best of luck with your recovery! Just remember, sometimes with PT things feel slightly worse before they get better! Frustrating, but you can get through this.
Lindsey McKelvey I’m fully expecting PT to be uncomfortable, but I’m also prepared to embrace that discomfort knowing that the more uncomfortable it is, the greater the reward will be.
I told my doctor about these symptoms 4 years ago...many doctors, MRI, CT Scan...nothing wrong...then my determination to find the answer, I found about about Vestibular Migraine and that I had the same symptoms. Seems maybe Miraine and Neuritis are the same or similar...lady at Big Lots today started talking to me and somehow the subject came up...she has migraines 16 plus or minus times a month...told me her sister started vitamin company and told her to take Elderberry every day...and for all the months she has been taking it, she is MIGRAINE FREE...doctors don't do much to help, so I'm doing my own thing.
@@lindsey8081 thank you for the video.. Its bin 2 and halh months. I do vrt for 6 veeks now and it's not getting any better. Before vrt i had dizzines ( like i m on a boat), naisea, had pressure, NOw i have all this and very bad headache and sometime i Ivibrate,.
@@noorshah7498 I am doing very well! It's been about a year and a half now and lots of struggles and ups and downs along the way. Don't give up hope! You will get there! Don't stop doing your VRT and keep moving!
@@MissAnnieB good to hear that am into it for about a month with lots of confusion and feelings like the ground is moving and like am on a boat and floating sensations and many more no one understands when I try to explain them they just think I have anxiety......how many months it took to feel better for you?
I just wanted to encourage others as well and agree with what you say in your video. I was living a pretty normal life and I'm at the 9 month mark. Just experienced the same set back after getting sick. Visual symptoms and other symptoms acting up. I'm going back to the exercises that helped me get better and my therapist says I should get through this quicker. So those who are struggling, take heart, take one day at a time and stay focused on this will pass and you will get better. God bless!
This is the best summary of symptoms, told in a concise way you can you identify from her account exactly where you are along the journey of overcoming this ailment. Thank you.
5 months after my diagnosis and I am really relating. I think I am a lot further forward in my recovery 5 months in than you were but this gives me hope that I’ll one day be at 100 percent recovery. I think my biggest fear is this never going away but this gave me hope that it will eventually all go away fully❤️ thank you for sharing. What a scary journey that makes you appreciate your health more than ever.
I've been seeing your videos since a month that i was diagnosed with labyrinthitis (almost exactly the same with VN but w/ hearing loss and mine was mild thankfully) now im in my 3rd month and everything you said was accurate to what i am going through month to month and i was really greatful of you doing this because it helped me with all those times to calm myself. It is really hellish but thank god it gets better overtime. God bless you and im also praying for everyone who has it too.
@@jaspalrama4041 Hello, i'll say its diff. For everyone but gently do vrt at home and increase your activities slowly you'll notice that it worsens your condition for a moment but later on, for the next days you'll see it does you better it just really takes time and your brain really needs to learn continously and while doing it i'll suggest you take vitamin c, b's and d3 to maintain good immune system while at home.
@@itgirlsguideph7549 i have vn for two and half month now. I doing VRT for 6 weeks now and i getting worse. Did you get also bad headache and feeling of vibretion. . Did you have also this symptoms. Are you healed?
Hello guys it’s my 1 month weird feeling with my legs while walking and feeling like I’m walking in the jumper. I asked my primary Dr. To refer me to ENT. Went to the ER 3 times and everything is normal. This video gives me hope and motivation. Thank you so much for this.
Order a bosu ball on Amazon ,your balance will improve alot quicker. Uneven surface for instability. Do one leg, feet together and eyes closed. Turn head and catch a ball.
On month 10 recovery for me and going through a “setback” which is what made me google a video for encouragement🙃 was surprised to hear you had a setback at 10 months as well! I was feeling really good for about a month before this.
Lindsey McKelvey Thank you so much for getting back to me, Lindsey. Your advice is much appreciated. I especially like what you said about pacing yourself because on my good days I tend to get ambitious and start pushing myself a little too much, and I end up doing too much or doing things I’m not really ready for, like too much intense exercise, or exposing myself to stressful situations. This tends to backfire and trigger symptoms like headaches. So yes, I’m learning about the importance of pacing myself and knowing when and when not to “push the envelope.” The first month was horrible, almost unbearable - that’s when the tinnitus and pressure headaches were at their worst. Right now I’m approaching the 3-month mark and, thank God, my symptoms subsided significantly in the second month and in this third month I feel even better than the second. That is why for anyone else suffering from this inner ear disease I want to reassure you that your symptoms will improve over time, but healing is such a slow, gradual process that you may not perceive any improvement from day to day. However, healing IS happening and is more evident when you compare your symptoms from month to month (the second month being better than the first, the third month even better than the second, and so on). You’ll see what I mean if you keep a diary of your symptoms. The most important thing to remember is you must be patient, push away despair and maintain a positive attitude, knowing that you WILL recover from this disease. Remember, this is a self-limiting disease, your symptoms will automatically improve over time regardless what you do, but doing certain things will definitely speed up your recovery time and I do believe vestibular rehabilitation therapy is one of those things, based in all the testimonials I’ve heard. Now, in my third month, the annoying tinnitus is almost gone - it has subsided to a whisper, and I have high hopes that even this will improve in the coming month, simply because all the other symptoms also continue improving. And this happened without my receiving any VRT therapy. But because I still have residual symptoms now and then, like ear pressure headaches and dizziness (especially when I move around a lot, or when I lie down or get up suddenly from a sitting or lying position), that’s why I think I’m overdue for VRT. So when I see my doctor this week I’m going to request VRT therapy and hopefully she will agree with you, Lindsey, that VRT is the most effective way of dealing with this disease. Until then I’ll continue doing things that I believe have helped me. Things like: 1) hypnotherapy for relaxation (check out Michael Sealey’s UA-cam videos. I think you’ll find two of his videos extremely helpful in helping you deal with the emotional and psychological impact of this disease and the names of these videos are: “Deep sleep hypnosis for mind body spirit cleansing,” and “Hypnosis for headaches and migraine pain relief.” 2) also helpful is a product called Lipo-flavonoid, an over the counter supplement that my doctor recommended for tinnitus. I’m currently experimenting with other supplements and will share the results with you over the next few weeks. 3) physical exercise is a must. Like you suggested, Lindsey, one must get out into the world, interact with people and not be afraid to live your life, because the more active you are, somehow this helps you manage your symptoms and helps you stay positive. But the key here is to pace yourself. Don’t overdo physical exercise, do whatever exercise you’re ready and able to do without stressing yourself so much that you aggravate your symptoms. As your symptoms improve and you get stronger, you’ll know when it’s time for something more challenging. 4) CBD oil taken sublingually helps you cope with the anxiety this condition causes, and it also seems to alleviate headaches and other bothersome symptoms. CBD oil is legal where I live and I take 0.5 mL if I feel a headache coming on, and take 1 mL at bedtime along with melatonin to help me sleep. This brings me to 5) making sure you get adequate sleep. Getting more rest is especially important in the early stages of this disease, but going forward it will continue playing a huge role in how you feel. Almost without fail my symptoms relapse when I don’t get enough sleep. So getting enough sleep is critical - I can’t overestimate the importance of it. Also, I suggest cutting back on exercise during bad weather because when it’s cold and raining outside this causes changes in atmospheric pressure that can actually worsen your symptoms. So be easy on yourself in those days, and get more rest instead. 6) if you believe in God, now is the time to pray for healing, and have others pray for you too because the healing power of prayer and faith is amazing. There are other things I do that have helped me battle this disease, but I’ve already written so much in this post, I’m afraid I’ll bore you if I keep writing! But if you or anyone else have any questions for me, please feel free to ask them. I believe sharing what has helped me may help others too, and vice versa.
I fully agree with everything you said here! So well said. I hope others read it and it helps at least one other person in the thick of it all believe that they will get better in time. So happy to hear of your improvement. And yes, doing some VRT can help you fine tune a lot of the small lingering symptoms. Best of luck!
Thank you Rey, Im 9 months in.Takes along time just to feel normal again. The anxiety is the worst!!! Im doing better overall, except for driving by myself, Im fine driving ,its just when no one is with that the anxiety kicks in , I only drive within amile or so of home, makes for a small world. I always think what if it comes back?? It has come back ,alittle when Ive got acold, then will fade back ,but in the back of my mind the fear is there I Im out by myself.
Hi, I know you wrote this a year ago, I just came across it, I had it for over 5 years it comes and goes, mostly its part of my life PTSD, tired, lightheaded, woozy, lights are a problem, I take over the counter med for motion sickness along with anxiety meds so that I could have somewhat of a normal day. I have been to therapy for 6 month, still the same. It's an adjustment, I make the best of it everyday.
Thanks so much for posting your experience, strength and hope, Lindsey. I'm 16 days into this and I'm absolutely terrified. I found your video, while crying, freaking-out wondering how the heck I can make it through this. Thank you for inspiration to see things through.
It goes away eventually I am after 10 months solid but I still do vestibular excercizes every day I feel it’s critical. Was bad for me for 3 weeks…..then ok for about about 3 months then slowly was ok …..now november and noticed some dizziness so started doing the vestibular excercises and feel better
Thanks so much for sharing! 7 months since major episode and 2 months into therapy after finally figuring out what happened with help of a good neurologist. One of the biggest struggles has been describing the symptoms and getting lots of strange looks from people when you try to explain them and how debilitating it all is. So many of my symptoms and recovery are just as you had. Helps to hear that there are others out there and you continued to improve even after a year. Thanks for posting!
Thanks for the update Lindsey. Happy to see you back to your normal self. I was feeling better around 85% But then I caught a infection and it's knocked me off again.. I'm back regularly doing my vrt again.. I have anxiety too it's a terrible what a fight. I've found ashvaghanda and Gaba really helped me with this. Thanks for the timeline update you have helped many.. X
Those annoying infections! Gah! You'll bop back to where you were once you are feeling better, I'm sure of it. The anxiety makes it so hard. Glad you've found ways to cope with it. Cheers!
Thank you for your very encouraging updates. I'm going on month 10. My symptoms occur daily but are manageable. I have a slight ringing in ears. The main symptoms are strange visuals, fatigue, odd sensations while walking and slight anxiety. But, I am functioning on my terms. The improvements are very subtle. One thing that I have had to adjust to is the enjoyment of a couple of glasses of wine. I pay the price for that. So, I backed off. As I look back I can recall having many of the symptoms for years. My doctor attributes these to possibly being due to a severe ear injury I suffered as teen when I got kicked in the ear underwater. My eardrum was perforated allowing water and debris to be forced into the inner ear. He also thinks my compensation ability has decreased due to my age (68). I am glad that you are doing well.
Best of luck and well wishes coming your way! Sounds like you've found a way to live even with the annoying symptoms. That's great! Keep on keeping on! Who knows, it could still get better. I thought I was as good as I'd get around 9/10 months and I got better from there even. :)
Thank you for being so open and vulnerable to post this to the community. One week ago I hadn’t a clue what VN was, but after being hospitalized last Tuesday, terrified, and getting the diagnosis I’m learning quickly, and your videos have been a source of calm reassurance. I really can’t thank you enough.
Lindsey, thank-you for your very detailed description or your Vestibular Hypofunction. I am a Nurse Practitioner who developed Vestibular Hypofunction in November 2018. Your are a very articulate patient who described in detail the symptoms you experienced. Neck pain is often cause by an increased activity of the Cervical Ocular Reflex (COR) that is trying to compensate for the loss of the VOR (visual ocular reflex) that is often associated with a Vestibular Disorder. Balance is a reconciliation of visual + vestibular +proprioception receptors. I suspect that Neck pain in patients with Vestibular Hypofunction may be due to the over stimulation of the Cervical Ocular Reflex (COR) which is aggressively engaged in trying to replacing the normal VOR, which was damaged during an Acute Vestibula event. Good news is that VRT and re-engagement of normal activities promote recovery.
I would have LOVED to have known you when I was trying to figure all of this stuff out! After a while, I realized that it was all connected. The balance system is fascinating.
Lindsey McKelvey I am encouraged to move into a NP role dealing with vestibular disorders. Make no mistake, this is not over for me , and like fellow patients with BVH, recovery is measured in months and years. Sharing our experiences is a very important portal for new patients caught in the fog and disorientation that will, over time, improve.
Thank you for sharing - it is helping knowing people struggle with the same. I have all the symptoms mentioned. First made me feel very anxious to the point where I was scared to go out and just stayed at home and ended up with pretty awful anxiety. Then I went out walking and it put me in a different spot - feeling hopeful, endorfine in the body but unfortunately today after walking a bit, I felt quickly off balance again and was scared of falling so went home. When I stopped I could see the pavement moving until it settled. So annoying, all those visual symptoms. I try to meditate, take cold showers everyday (not sure if this is gonna help but listened to Wim Hof so decided to give it a go), I listen to a "feeling safe" meditation a lot and practice mindfulness when walking - each negative thought I try to replace with a positive one. Also I changed my diet - I used to have a sweet tooth - now no sugar, alcohol, gluten and diary - I can see the impact of the diet is positive but still long way to go. I also want to stress, that I believe that my situation was triggered by intensive use of the smart phone and PC screen. I am sure that they messed up my vestibular system. I don't say they are not other triggers but literally I feel like my brain was overstimulated by the overuse and something got wrong. I would warn everyone from using them too much. Also my thyroid doctor thinks it may something to do with estrogen dominance....just throwing it out there. I wish everyone to get better soon!
Hi @hhh h how are you? We have the same symptoms esp the ground moving after coming to a stop. Have you been diagnosed? Bec. Doctors here doesnt seem to know a lot about this
@@annam5057 so I've been diagnosed with vestibular migraine a while ago. I got lots of migraines (4x a week) to a point it impacted my work life etc. Long story short, after a while I found a doctor who correctly diagnosed me with histamine overload/intolerance. I had to cut off all histamine (very difficult) and after first day of the diet, my symptoms diminished by 90% (I know, incredible) so I kept being on the diet. Now it's been a year and I walk, swim, do yoga etc. Have had about 2 episodes of spinning head when looking at the computer in a year. Migraines gone. Still not great with stability (I can see when doing yoga or long distance walking) and it tends to get worse when I sin with my diet. Also, I got my gut checked and they found out some bad streptococcus and leaky gut plus very low level of good bacteria which I got treatment for and will seesoon with my next test if its healed. So to summarise it - in my case it's been all gut health issue (the gut - brain connection). I have to eat a lot of leafy greens every day and no histamine food. I had to completely reorganise my cooking, first it was very frustrating to a point I didn't know what to eat as everything caused my reaction so I ended up eating rice and mango. Now in a place where I know what to cook. I completely eradicate sugar from my diet (just fruits) and that's been in my view the most impactful and positive step for my health. Before my diet, I eventually 'collected' around 30 neurological symptoms. now I feel really good yet my healing is still not complete. I wish you all the best on your journey!
Thanks for making these videos. I am in my 5th month, and still feel woozy and floaty often. I work on a computer for work which has been a struggle and sets me back. I hope that I will recover fully like you did!
@@SheilaBRI have improved a bit, I can do 8 hour days on the computer 3x a week now, it’s tough and I have to push myself. I did the VNG test and my results came back normal. The audiologist mentioned I could be experiencing vestibular migraines.
@@ChloeWarren-fz8gp Hi Chloe, did you do a VEMP test as well? How long have you been experiencing symptoms? Also, did you do one-on-one vestibular therapy with a physical therapist? Thank you so much for your help!!!
@@SheilaBRI just did the VNG and caloric test. 6 months so far been experiencing symptoms on and off. I went to a physical therapist for a few months and then stopped and continued to do the VRT excersise at home.
So glad to hear you’re back to normal! I was diagnosed with Vestibular Neuritis, I’m at 4.5 months and was getting better after 2.5 months, then had a huge relapse which I’m still struggling through. Symptoms exactly the same as yours. Now doctors are saying it’s Vestibular migraine! Did they ever mention that to you?
It was mentioned as I was trying to figure out what I had, but my symptoms (and the clear results on my VNG) didn't really sound like VM so I kept moving forward with VN treatment. Who knows, maybe I do get vestibular migraines here and there. I've had ocular and the regular migraines in the past so it wouldn't suprise me if I had vestibular ones, too. But, I've haven't had many migraines in the past year. It's been glorious (I'm wondering if taking lexapro has helped with that- it does for some people)/
Lindsey McKelvey I just started Lexapro last week after seeing a psychiatrist who also suspects severe anxiety from VN. I’ve had occasionally bad headaches in the past but I’m not buying the Vestibular migraine diagnosis. I go back to the ENT in a few weeks for additional testing so may know more then.
Such a great video, wonderful to find a positive video. Ive suffered with vestibular neuritis for about 6 months, i am on the mend now i feel. I had all the symptoms you referred to and its great to hear you talk about them as it confirms in my head that they are all "normal" with this condition. I plan to go back to work probably end of september, and hopefully ill continue to improve. Thank you for a positive video on this condition. Best wishes!
good luck getting back to work! going back to work could flair some things up for you a bit, but just remember that getting better has some humps, totally normal!
@@lindsey8081 thank you, i have had a flair up these last few days after feeling pretty good for a few weeks. I return to work end of this month. I have booked neuro physiotherapy in a bid to improve things further. Ive watched ure videos a few times now when im feeling down. Thank you again and all the very best wishes to you.
Hi Lindsey, I found your video about 2 weeks ago. I am so grateful to have found it too. I have been experiencing all of these symptoms for 3 months now. Gone to the ER numerous times only to be told there is nothing g wrong and that I need to maintain my blood pressure and was given meds for depression and anxiety. Things that I've never had a problem with before. I had never heard of this before you posted a video and I googled my symptoms. The Neurologists are saying I have migraines and I know that's not it. I have a Doctors appointment tomorrow and I'm gon a mention to her again, that I still have imbalance m, tingling in different places and can't really focus. I even got my eyeglasses prescription changed because I thought it was my eyesight due to postpartum after having my son January 15, 2019. All of this started at the end of February. But looking back I did have a nasty cold and a history of tinnitus while serving in the Army. I'm not big on taking meds so I am open for the VRT if they offer it to me. I actually experienced this last year and never was told what it was. I feel like the Doctors then and now weren't very aggressive towards finding the problem or solution. However, this time will be different . I'm a Mother and wife and I don't have time for this. If it is something that's lifelong I want to find the best way possible to combat it and manage. My symptoms are decreasing little by little but I want a medical professional to tell me for sure and then explain to me because I have so many questions. Like where does the tingling come from? Does the ENT Doctor do the testing or Neurology? Is it hereditary? My son just had his second surgery for tubes being put in his ears. I'll tell you this, when I saw your video, it immediately gave me hope and happiness again!! I wanna thank you for posting it and being very open and thorough with your journey. God bless you 😘
Thank you for your response! I'm really glad to hear that my story has given you hope. It is a hard journey. But in the end, when youre feeling better and saw how strong you were, you have such a great sense of pride in your strength. I found that it was up to ME to get the docs to push for answers. I had to research and advocate for myself. Push for tests to give you definitive answers. Have your doctor line you up to get an ENG (it will give you a clear understanding on whats happening in your inner ear...if nothing shows up then it could be vestibular migraines). I don't think it's heriditary because its a viral infection that generally causes it. But. That being said, I think family members can be prone to certain illnesses because of their genetic make up. I think my mom may have had this in her 30s. She was never tested.
Dear u do eng test first...same phenomenon and treatment happened with me at last dr told me to do eng and report has csme that vestibular lesion in left ear
My symptoms started in Oct 2018 and still dealing with it. Your video gives us hope. I too have to hold my head and people would wonder what I was doing. Also that I was faking and just being lazy
Omg this. I’m going through the same, sometimes my anxiety makes me believe I’m going to die, I’ve seen like 15 doctors non can really tell me what I have but I have exactly the same symptoms, it’s the middle of summer and all my friends are going out and doing things and I can’t even leave my house, as a very active 21 year old this is really really causing my depression and THE WORSE anxiety, sometimes I feel like I’m going crazy, I can’t go to work, can’t study, go out with my friends, do normal stuff and I’m devastated.... please if you have any tips for me I’m all ears... your video helps a lot because it makes me really believe that’s what I have and it will get better at some point...
Theres a great Facebook support group called vestibular hope. Check it out. Folks can help you figure out your next steps to help reach a diagnosis. You can also search the page for heaps of good information that's already been posted.
Hi I know how you feel, if you go to Wal-Mart they sell over the counter motion dicived med 50mg each for $5.00 you get 100 tablets the brand name is equate they have really help me out, I take one as soon as I wake up some times I don't need to take another, hope this help out with the symptoms
I woke up got out of bed and down i went.spinning.april10,2019.My husband was at work,I was home alone.we live out of town.the worst feeling i ever had in my life! It would come and go .I stayed in bed most of the time.I was afraid to go to sleep,would it be worse when I woke up.......I never had anything like this befor.Im 55 years old,in good health.I waited til sunday ,4 days later my husband took me to urgent care.I was told thatI had bppv.Go home and do neck exercises and find on utube maneuvers for bppv and do this for 5 days.At the time I thought wow this is not anything real serious,I can do this!after doing neck and maneuvers3 times aday for 3days I was good did one more day of maneuvers 4 total days.waited one more day befor going anywhere.thankgod I was not working at the time.I got acall to go back to may1.may7 woke up with abad headache neck sore took some aspirin and went to work.As the day went by I started to feel alittle off to the right not dizzy, just feeling not myself it would come and go.Next morning felt worse,went back to urgent care may8.By then my right side of my body was numb and horrible headache rightside balance off.They sent me to the ER.they did a complete blood count,Imaging test cta head&neck&mr head wo contrast.Everything was good.told me that I had Bppv .go back and do my maneuvers and to follow up withotolaryngology and neurology appts.ear doc.june12.hearing test.GOOD! The ear doc.said that I had residual calcium in my ear still and to do balance therapy.I was doing therapy already .By the end of june I was at 80%.at the beginning ofjune I was 80%.Also at home I would do exercises.I was not getting past80% somedays I would be70%then back to80% .I told the theraphist Im not getting past 80% that Im going hold off my apps.and wait to see the neurology Doc.july24.takes forever to get into these places. I made my appt. on may 9.10 weeks.so between may8 and july23 my life as I knew it was gone!!!I wake up in the mornings wondering if this is going to be a good ,ok or abad day.I would only take a shower when my husband was home,I would do that and take care of the animals befor he left for work.I was afraid of falling.the rest of the day l wouldent move around much,always have my phone on me.My anxiety was bad.I was living in the movie GroundHogs day. Couldent work ,dident leave the house unless someone else was driving.Im still doing my exercises and watching alot of utube. Thats where I found your story Lindsey, I have the same health proplems,so I wrote vestibular neuritis down.july1 getting up to 90% then went into abig outlet store,somthing happend felt sick weak,like wierd! For afew days back to 80%.then back to 90%.I went to my neurology appt. July24 I was with the Doc. 10 mins.and she says the words vestibular neuritis.I pulled out my paper and showed her, told her about your stories.I watched your stories again this morning.I have never done a public reply,I wanted to share with others ,and ImSo happy for you !!!The doc put me on two meds. I start vestibular therapy friday,ck back with neurology Doc. Next month.Thanks again!!!
im not sure if you will see this message in 2021 but i am so happy to hear this! i had a weird tunnel vision attack driving in november of 2020 and from the moment on i was so dizzy. been in VRT for 3 months and just about to finish up there. id love to chat about everything if youd be open to it!
Lexapro can make you feel really good! Except I can't take it because it flares up my IBD/Crohn's. I just realised that if this is what i've got, I've had it for over a year :( I have all of these symptoms and I've been to the ED twice during that year and they did nothing, said nothing, diagnosed nothing and sent me home. As I was getting up off the hospital bed (as they were throwing me out) I almost fell over - if it wasn't for an orderly that was passing by me that grabbed my arm. The nurses saw it, but they sent me home anyway. If I DON'T have this and I have MS or something like that, I am going to sue the arse off them! I'm so glad you're better. Louise, Perth Western Australia xo
Thank you so much for your videos! You have no idea how much these have helped me. I'm 2 months into my recovery, and it seems like I have days that go well, and days where I'm dizzy 24x7. Did you have days where you seem to regress? It seems like every day it's a roulette wheel of what symptoms I'll experience that day. Your videos provide hope that things will get better. Thank you!
Yes, I never knew what a new day would bring. Sometimes a great few days would be followed by some crummy days. It's ok. Dont fear it. Just breath deep and know that your brain is working on compensating and there just might be days that are a struggle.
For anyone reading in similar situation or that is just starting out on this journey, I had this happen completely out the blue around 6 months ago, July 2020. The world started spinning out of nowhere when I was watching tv, it felt like I was very drunk without any of the fun, constant tinnitus, sore/ stiff neck, headaches, nausea and general vertigo. I had a CT, MRI and all clear, so expected Labyrinthitis. It took me about 4 weeks to regain my balance properly, but was easily tired out if i went out, sensory overload, but I always tried to do what I could to stay active. I had two further relapses of vertigo and balance set backs in September, not as bad, but recovery was also slower. It's now January 2021 and just last week I feel that my balance is fully restored. Before that the lingering thing was if I looked up to the sky too quickly I would fall to the right. The tinnitus remains constant, but I'm feeling much better, running 5 and 10k's, no longer any balance issues when I quickly move my head. My sleep has not been good since July, I think the tinnitus keeps my brain always active, but hopefully in time this will also improve and I will make a full recovery. It's not pleasant, but I felt getting the scan and knowing it was nothing life threatening was an important first step. It let me accept it, try to understand it more and do as much as I could without the fear of what else it could be. Stay active, eat well, exercise, get out and about and try to stay positive. Although it's frightening at first and quite tiresome and limiting at times, there are worse things that happen to many people every day, so be grateful for what you CAN do, and hopefully you will recover in time. Namaste
This was almost exactly my experience and the vestibular therapy helped but gotta stick with that gotta keep moving. Even if you’re uncomfortable go out go for a walk do it ….try to drive I forced myself to drive probably wasn’t the smartest thing to do but I did. But have to keep moving
Lindsey I really have a hard time finding other stories like yours. Im on month 7 and the anxiety is the worst. Im fully capable of doing whatever I want, however I still have a weird sense of self and occasional dizziness. Im scared that you are the exception to the rule and everyone else lives this way until death.
I had that fear, too, but I really think it is just that- a fear. It's not the reality. I've talked with numerous docs and physical therapists and I've said that to them- they all have said the the MAJORITY get better, but it can take a long time for some of us to stop showing symptoms. Best thing you can do for yourself is start working towards calming the anxiety. Go to talk therapy, start a yoga practice, write, cry, pray whatever you have to do to set up a routine that helps you get ride of the anxiety. The anxiety will not serve you and will not help you in your healing process.
Lindsey, I'm starting month 8. Im working on the anxiety. I had a decent day up until about 5pm. I pushed too hard at physical therapy and it wipes my eyes and brain out. Im not stopping until this is over though. Thanks for your continued support and responses to everyone
Thank you for this! You have described how I feel exactly. I’m 5 months in and still having bad days. I am looking to get back to work soon!!! You have given me hope!! Thanks again ❤️
@@lindsey8081 Hey Lindsey, did you suffer from oscillopsia? Did the horizon jitter/vibrate/jump mildly when walking/running or even chewing? Did that subside over time? All the best, Aila
Thanks so much for sharing your progress and hope with us. Just wondering if you are still taking an SSRI? I have been fighting taking medication but am now taking nortriptyline. Vestibular migraines and the neuritis has been my issues.
I am still taking an SSRI. I found that it actually made me feel like a better version of myself so I've decided to keep on it for at least another year.
Hello Lindsey thank you for posting this video. I am four weeks in and I am starting to feel better in my balance. But I feel so easily sensory overloaded and cry very easily. This is not like me at all and I feel scared by this. I am happy that you are talking about the night fears, since I am having this diagnosis, I have had a lot of anxiety in my sleep, I dream that I fall and I wake up scared. I am supposed to be graduating in 3 months but I don't know if I will be able too. I wanted to ask you, is this sensory sensitivity and tiredness something that you recognize? I was very proud of myself, yesterday I walked towards the supermarket and was not that tired afterwards. What a hard disease! I want to wish everybody well 💖
So happy for you! The curve of recovery is different for many, but I wanted to know if you would share to what level of vestibulocochlear nerve loss you were diagnosed with?
Lindsey!! How many months it took you to estabilizase your vision? I am 3 months in. Hope you’re doing great! You are a superhero for many of us vestibular strugglers. Thanks.
One thing that makes ME really angry...I'm over 4 years into this nonsense and not ONE DOCTOR ever mentioned Vestibular Migraine or Neuritis...time to start doing holistic medicine!!! I'm NOT into meds plus my doctor said some aren't good for people my age...a lady who has serious migraines for years, started taking Elderberry and has NEVER had a migraine again. I'm getting some tomorrow. THANKFUL you are doing so well and STAY THAT WAY! By the way, today is January 21, 2020.
Hi.! Thank you for your video. I’m super happy you have recovered from this. I was diagnosed with Vestibulapathy back in December and I’m being dealing with this since mid November. I’m going into my 5th month. I feel that I’m getting better but my ears still feel like I have fluid inside of them like I have a cold. Did your ears feel that way also? If they did, how long did it take for them to start feeling better. Thank you again. :)
ugh yes, they felt so full. pressure. not like fluid for me, just full and pressure. It's been so long, I have a hard time remembering the time line now. All I can say is it's not an issue for me now :)
Hey glad your recovered. How did you deal with the anxiety? And how often did you do vrt? I’ve had this over 9 months but took 4 months to get diagnosed. Still dizzy 24/7 but slowly noticing improvements although up and down, finding it hard to get out
I think I talk a little bit more about the anxiety in my other videos, but, yeah it was really hard for me. Daily panic attacks and constant anxiety. I couldn't eat, sleep, or get out of my head. I ended up seeking therapy and started using an SSRI to help calm me down and get me out of the depression I was spiraling into. VRT everyday, multiple times a day, for 3 solid months. And then when I stopped, it was because I was back at work hiking, biking, and driving everyday.
That’s good an ssri worked. I’m reluctant to try at the moment as this started when I went back on one, although it was most likely a stomach virus that caused all this. I also have m.e and p.o.t.s but this has turned my world upside down and I had half a life before. Shops are the most overwhelming but I’m still dizzy even walking and don’t really go out alone. The anxiety is awful. How did you measure progress? I’ve now been told by ent it could be migranes too so really hoping a med might help. Can I also ask were you still dizzy while hiking ect? After vrt?
@ytubeact123 hi I'm much better still on antidepressants which I think helped and seeking help from a neurologist again on b2 400mg as Dr suggested but overall much better since having my son, its just bad still during my monthly cycle. Are you suggesting with vestibular migrane? That's my diagnosis
My ears don't ring, I don't spin, just woozy feel like I going to faint l also take anti depression meds to clam me down. Had 6 month of pyicial therapy Insurance would not pay for more. It's like your life is over, but not giving up. Thanks for sharing.
I’m about 2.5 months in and whilst things have gotten slightly better I feel like I’m stuck. A few days ago I had 2 amazing days where I barely noticed any symptoms and then I went back to the same. Does this happen in your recovery? Better days than others until it tapers off all together?
Yes. Exactly like that. Id have a few good days and then maybe a day where I felt like I couldn't leave the house. Eventually the good days outweighed the bad until I wasn't noticing symptoms anymore.
@Lindsey McKelvey thanks for ur wishes .. It's been 9 Months for me but I started my VRT late after 4 months . My spinning session is gone ..Now I'm having issues with my vision and I think it's the only thing which makes me dizzy.. I am pretty much functional now but not fully. I go to office ,malls, stores but crowdy roads are still a hard task for my vision. I feel that if this vision issues goes then I will b around 90 percent fine . now I can say that I'm somewhere between 50 to 60. Sometimes ear sticky ness Or fullness and Struggling with eye pain ,eye pressure and head pressure issue :(
I feel like vision is last to remedy. It was the final thing to improve for me and I see that is common for a lot of other people. Just remember, it still can get better even when you think it is probably as good as it can get. I feel AMAZING. I forget that I even had VN, it feels so far removed.
Hello.. I've been with it for 5 months now I am slowly recovering I keep having unexpected bouts of dizziness😢 I hope to get rid of it eventually my life changed because of it I used to be a driver and I really liked my job so I can't do my job at the moment😢 I have constant ringing in my left ear this video gives me hope that someday I will return to my old life and to full health💪🏼🤞
👋🏼 hey there. I couldn’t drive til about 7 months. I noticed during my recovery I’d have “set-backs” after feeling like I was getting better, but they become far and few in between as you continue to recover. Just wanted to spread some hope! I’m feeling way better than when it started last Nov.
Hello, Lindsey! Thank you so much for this video. I know this may sound crazy, but did you ever notice worsening of symptoms around your monthly cycles?
Not crazy. Totally noticed that. Things were way worse the week of my period. After about 6 months I stopped noticing an increase of symptoms around my period.
Do you ever have to do some of the vor/ eye exercises? Because I read it's normal to decompensate over time and the brain needs reminding. Especially after months or years have gone by.
I had this for years had therapy, had it for5 years, I am always lightheaded tingerling in my face head feel sometimes funny its a weird feeling had to explain bright lights crowds make me feel not part of. Yes woozy is a good word for it.I feel tired but I force myself to do things ent yes. But still feel the same.yes that's what I feel woozy and lightheaded.
Mine started since last Friday on Sunday I was singing at the church choir then I realized I cant get up anymore likely hospital located next door to the church I left the service then with lots of struggle I got myself to the emergency department they asked me for my name and address I was struggling to answer them I just handed them my driving licence they took the blood test ECG Etc then they come back with Vestibular Neuritis diagnoses everything still spinning around me I'm so confuse I feel my head will blow up eventually, my hearing been reduce on my right ear I try to walk straight I just keep going left I'm like I am drunk 24/7 I was at my class room yesterday I was asked what's 3 times 330kg I was staring at my teacher she thought I used some sort of drugs or something apart of that I am bus driver I can't even go to work now I got one week off sick I hope I get better till Friday otherwise I might lose my job
I’m suffering with it bad right now. I’m having the same experiences you had. It’s hell I want it to go away I’m so confused all day mixing words brain frog ): ): ): I just want to die
i feel you. so sorry you are suffering. I encourage you to seek out therapy for your mental health while you cope with this illness. It really sucks and the depression and anxiety that come with it are really scary. it can and does get better.
@@lindsey8081 already in therapy. isn’t much I can do as no one seems to believe me and or take me very seriously. pt finally called my gp to let them know im not benefitting from it and there is nothing they can do for me. neurologist admitted it’s probably caused by a mistake from an old cholesteatoma removal surgery I had where they also did a bunch of other stuff. just have to ride it out i guess
@Lindsey Hey.....that was really great to know that people are getting better.... Can u pls be so kind to ans few of my questions: 1.Did u feel any head pressure and headaches 2. What were the vision symptoms..mine are like discomfort of vision as if lights are not right or sometimes I feel like depth perception is not proper.
Hi! YES. I had head pressure and headaches daily for the first 6 months. Sometimes migraines. The pressure was mainly at the back of my head. I no longer have that. The way you describe your visual symptoms matches how I would describe mine (plus a lot of other ones depending on the day!!). It's all better now! I've had a dreamy past year with little to absolutely no symptoms. Best of luck in your recovery!
@@lindsey8081 thanks for ur wishes .. It's been 9 Months for me but I started my VRT late after 4 months . My spinning session is gone ..Now I'm having issues with my vision and I think it's the only thing which makes me dizzy.. I am pretty much functional now but not fully. I go to office ,malls, stores but crowdy roads are still a hard task for my vision. I feel that if this vision issues goes then I will b around 90 percent fine . now I can say that I'm somewhere between 50 to 60. Sometimes ear sticky ness Or fullness and Struggling with eye pain ,eye pressure and head pressure issue :(
How long did you do your VRT for you? I’ve been suffering for 3 months now. I started some VRT exercises I got from the NHS 2 weeks ago and they have made me so much worse, I’m still sticking with them but it’s hard. Waiting to see a vestibular physiotherapist in 2 weeks, covid has slowed everything down, you’ve videos have given me so much hope! Thank you and so pleased your doing well! Xx
I did it daily for about 5 months and then here and there after that. VRT made me feel worse for the first month, but that's to be expected. You have to make yourself feel dizzy/bad in order to retrain the brain not to react to those things. Try to pace yourself. If you feel really terrible from the exercises maybe slow them up a bit so that you aren't overloading your brain with too much at one time. Get a lot of rest!!
Thank you, I’ve watched all your videos 3 times now! They give me so much hope. The dizziness from exercises seems to short lived now. So hopefully that a good sign, did you take anything for your sinus infection? I think that’s what caused mine vestibular issues, my left side still doesn’t feel right and I get head ear and eye pressure x
You are fortunate that you got better i’m happy for you i have suffered with this for years and still suffering.Did they tell you why this happened to you was it a viral infection ?
So sorry to hear you are still struggling. That has to be hard. With VN there is no real way to measure the cause. You can't go into the inner ear and examine it with out damaging everything. So, you can guess the likely cause but never know for sure. I did have a terrible sinus infection the month before. Ive also read that autopsies have shown the herpes virus in the inner ear of folks with VN. So. Who knows. I do get cold sores aka herpes. Perhaps that virus is in my inner ear. Perhaps I was sick enough that my immune system weakend and the virus in my inner ear "woke up" and reaked havoc on my vestibular nerve. No idea. I do know that 49% of my nerve is damaged. I also know that my brain has compensated for that loss and no longer sends dizzy signals when i move about in the world. Perhaps you are dealing with more than VN? Some with VN also then develop vestibular migraines that can cause the same symptoms for years. Anxiety will also mimic symptoms (not discrediting your VN, just wondering if there is more going on on top of it). I wish you well and hope you have more good days than bad.
Lindsey thank you for responding and thank you for all the info it may be viral and just keep coming back and like you said my immune system may just have started weakening i did have lyme as well a while back but took alot of antibiotics .and my test are not showing it anymoreIt will hopefully go away someday... anyway thank you again😊
Hey Lindsey, did you suffer from oscillopsia? Did the horizon jitter/vibrate/jump mildly when walking/running or even chewing? Did that subside over time? All the best, Aila
Yes I did notice that. The horizon would vibrate when I'd walk, run, drive, or bike. And yes, it did subside! I didn't notice it until the 2nd month when I was getting more active again and it slowly got better.
It all helped! I did it all. If you google Vestibular therapy, I've done almost all of the movements at least once! If it didn't make me feel sick, then I knew I didn't need it. I'd find ones that challenged me and I would do them everyday until they didn't make me feel gross anymore. What helped a ton was just getting out into the world. Walking. Running. Going to grocery stores. Naps! Those were good too! I was so tired. Pace yourself!
Lindsey McKelvey Thank you so much for getting back to me, Lindsey. Your advice is much appreciated. I especially like what you said about pacing yourself because on my good days I tend to get ambitious and start pushing myself a little too much, and I end up doing too much or doing things I’m not really ready for, like too much intense exercise, or exposing myself to stressful situations. This tends to backfire and trigger symptoms like headaches. So yes, I’m learning about the importance of pacing myself and knowing when and when not to “push the envelope.” The first month was horrible, almost unbearable - that’s when the tinnitus and pressure headaches were at their worst. Right now I’m approaching the 3-month mark and, thank God, my symptoms subsided significantly in the second month and in this third month I feel even better than the second. That is why for anyone else suffering from this inner ear disease I want to reassure you that your symptoms will improve over time, but healing is such a slow, gradual process that you may not perceive any improvement from day to day. However, healing IS happening and is more evident when you compare your symptoms from month to month (the second month being better than the first, the third month even better than the second, and so on). You’ll see what I mean if you keep a diary of your symptoms. The most important thing to remember is you must be patient, push away despair and maintain a positive attitude, knowing that you WILL recover from this disease. Remember, this is a self-limiting disease, your symptoms will automatically improve over time regardless what you do, but doing certain things will definitely speed up your recovery and I do believe vestibular rehabilitation therapy is one of those things, based in all the testimonials I’ve heard. Now, in my third month, the annoying tinnitus is almost gone - it has subsided to a whisper, and I have high hopes that even this will improve in the coming month, simply because all the other symptoms also continue improving. And this happened without my receiving any VRT therapy. But because I still have residual symptoms now and then, like ear pressure headaches and dizziness (especially when I move around a lot, or when I lie down or get up suddenly from a sitting or lying position), that’s why I think I’m overdue for VRT. So when I see my doctor this week I’m going to request VRT therapy and hopefully she will agree with you, Lindsey, that VRT is the most effective way of dealing with this disease. Until then I’ll continue doing things that I believe have helped me. Things like: 1) hypnotherapy for relaxation (check out Michael Sealey’s UA-cam videos. I think you’ll find two of his videos extremely helpful in helping you deal with the emotional and psychological impact of this disease and the names of these videos are: “Deep sleep hypnosis for mind body spirit cleansing,” and “Hypnosis for headaches and migraine pain relief.” 2) also helpful is a product called Lipo-flavonoid, an over the counter supplement that my doctor recommended for tinnitus. I’m currently experimenting with other supplements and will share the results with you over the next few weeks. 3) physical exercise is a must. Like you suggested, Lindsey, one must get out into the world, interact with people and not be afraid to live your life, because the more active you are, somehow this helps manage your symptoms and helps you stay positive. But the key here is to pace one’s self. Don’t overdo physical exercise, do whatever exercise you’re ready and able to do without stressing yourself so much that you aggravate your symptoms. As your symptoms improve and you get stronger, you’ll know when it’s time for something more challenging. 4) CBD oil taken sublingually helps you cope with the anxiety this condition causes, and it also seems to alleviate headaches and other bothersome symptoms. I take 0.5 mL if I feel a headache coming on, and take 1 mL at bedtime along with melatonin to help me sleep. This brings me to 5) making sure you get adequate sleep. Getting more rest is especially important in the early stages of this disease, but going forward it will continue playing a huge role in how you feel. Almost without fail my symptoms relapse when I don’t get enough sleep. So getting enough sleep is critical - I can’t overestimate the importance of it. Also, I suggest cutting back on exercise during bad weather because when it’s cold and raining outside this causes changes in atmospheric pressure that can actually worsen your symptoms. So be easy on yourself in those days, and get more rest. 6) if you believe in God, now is the time to pray for healing, and have others pray for you too because the healing power of prayer and faith is amazing. There are other things I do that have helped me battle this disease, but I’ve already written so much in this post, I’m afraid I’ll bore you if I keep writing! But if you have any questions for me, feel free to ask them. I believe sharing what has helped me may help others, and vice versa.
Will you do the caloric testing again to look how/if your inner ear has improved? Now i am in my 5th month of labyrinthitis (probably because i crushed my head during work with a steel construction very badly the day before.) Feels really scary. Tinnitus and every time when i move my head to the right i am "falling out of my body" and loose my balance. Can`t walk in a straight line, it pulls me constantly to the right. In the first weeks i had some improvement (the innitial vertigo disappeard) but since 2 months nothing has changed. Hope i will get better soon. Nice to hear your recovery story. My Neurologist told me that my residual symptoms will stay constantly and wont disappear. Hope that he is wrong. I am 18 (male)!!!! Cant accept this situation! Greetings from Germany
I hope he is wrong, too. Sometimes things technically don't go away but your brain learns to ignore them. Like, I still have tinnitus, but I hardly notice it anymore. I can fall asleep at night without a noise machine because I'm just not thinking about my ears ringing. It's like my brain has gotten so used to hearing it that it's become a background noise I tend to be able to ignore. Stay positive. Keep as active as you can tolerate. Generally, the younger you are, the better the brain is at compensating for the damage. I would be curious to see if the damage to the nerve has imrpoved at all by taking a caloric test again some day, but really, it doesn't matter if it's better or not because my brain has figured out how to exist normally with the damage. I feel pretty good!
Hey Lindsey, got diagnosed with VN. On month two, pushing through VRT. Just wondering, did you have any symptoms with sound sensitivity? I've been struggling with high pitched sounds and I'm wondering if its just VN or something else?
It's crazy all of the symptoms this disorder comes with! Yes. I was super sensitive to loud noises. High pitch clanking of weights at the gym really bothered me. As did bright lights. And motion. and like literally everything! ha. Happy to say none of these things bother me anymore. They slowly faded until they eventually completely disappeared
Hello, was there a certain procedure done by your ENT to diagnose you with this condition? So far I've had a VNG test and been through vestibular therapy and had soft tissue neck, inner ear MRI and also brain MRI but no findings, still have unbalance issues. No answers, have no idea what to do.
michael corcoran I’m just into month 7 and I’m back at work for my first full week. I’ve had a phased return. It has been good but I’d say 95% as I still feel lightheaded at times and big store still aggravate my condition. Fingers crossed for full recovery soon.
About 10 minutes each session about 3 times a day. I noticed changes after the first week. I didn't always feel better from them but I saw minor improvements and changes pretty much right away and could add different exercises to my routine
flying has no effect on me and it didn't when I was sick, either. on a plan you are sitting still and have limited visual stimuli messing with your brain, so all good there.
michael corcoran it’s definitely not as bad as it used to be, the dizziness is very slight to the point where I don’t notice it unless I think about it.
Hi Lindsey, I've have had vestibular neuritis for almost a year now. On top of that I developed vestibular migraine and along with pppd couple months in. My neurologist prescribed me with some antidepressants, but I am terrified of taking them because I had a reaction from one of the antidepressants I took awhile back. I keep going back and forth debating if I should take the antidepressants to see if it will help. With your situation, when you took the ssri, did it make most of the symptoms go away? Because I'm at a point where I feel like I'm not sure if it's just my anxiety that is creating these symptoms.
Days into taking an SSRI I started feeling better. By a month in, I felt mentally and emotionally like myself again. My vestibular symptoms stopped consuming me and my anxiety was gone. If I could go back in time I would have started taking them sooner.
Hi Lindsey, Thank you so much for replying back, another question I have is, are you still taking it now? One of my fear was that if I start taking it, I was going to be dependent on it.
@@kaeeroyal3124 sorry for the delayed response, I stayed on Lexapro for about 4 years because it was serving me well and helping me in other areas of my life. I decided to wean off of Lexapro February of 2022. It took about a month to wean off and to feel back to normal. My head was a little fuzzy and I noticed that I felt pretty irritable. I weaned off because I wanted to see how I felt without them and also did not want to have to take a pill every day for forever. Happy to report the weaning off wasn't a huge terrible process and I've felt really good the past 8 months. Being on lexapro was very helpful for me and I'm really glad I took it. It's also helped me understand my moods more. I know now what it feels like to not be anxious, to not obsess over things, and to feel steady and not depressed. I feel like I'll be able to better navigate my feelings now knowing how I felt when I was on the medication.
I’ve been dealing with vestibular neuritis for 4 1/2 months. The biggest things for me are dizziness, ear fullness and fatigue. I’ve been taking 0.5 mg Clonazepam in the mornings recently and 10 mg Nortriptyline at night and I will say that since taking these meds about a week ago, it allows me to mostly function normally throughout the day. But clearly nowhere near back to where I’m hoping to be. Was the ear fullness severe for you? I can hear, but it’s just so full and throws me off balance and begins all the stress, anxiety, etc. Glad you got better!
yes yes yes. The ear fullness was bad and it scared me. Some of that full feeling though was from my neck and jaw being so tight and stiff and not actually related to any "problem" in my inner ear. It was scary though. I was so worried that the fullness meant that there was an active infection or problem in my ear and things would get worse and I'd lose my hearing or get even more dizzy. My fears did not come true and as I learned to be less anxious (deep breathing, meds, meditation) and to relax my jaw and neck (with the help of acupuncture and chiropractor) I started to feel much less fullness in my ears.
Lindsey McKelvey thanks for the response, it seems like the same day over and over, I wake up dizzy and ear full, take a pill, start to get a little better, lingering dizziness or strange feeling, late afternoon and closer to night it’s getting better, take the other pill, go to sleep... and starts all over again. I may visit a chiropractor hopefully after this pandemic passes, but any other advice for the ear? I take vitamin D (was really low), B12, Flonase, besides the Clonazepam and Nortriptyline. Thanks again!!
@@nickdakuginow I took vitamin c, too, to help boost my immune system and maybe help heal the nerve a bit in addition to the other vitamins you mentioned.
I have that sticky eustachian tube feeling giving me a feeling of ear fullness. Mine also happened after a bad sinus infection. My blocked left ear almost feels like it is caused by my neck muscles. Did you get over the sticky ear feeling?
I had the full sticky ear feeling. Once my muscles relaxed, I felt like it got better. My ears don't feel full anymore and I can move my head around without my ears making a cracking noise. The tubes aren't back to perfectly normal. They do still make a little noise. Not much. And only if I move my jaw around and open up the back of my throat like I'm trying to pop my ears. It doesn't cause me grief like it did.
@@lindsey8081 thanks for answering my question. That gives me hope. My ears are alot better. I find trigger point therapy and accupuncture on my neck by a physio has helped me the most along with prescribed exercises. I believe that my ear problems most definitely come from my neck and shoulders.
@@hec123567 just an update... I've recently started going to an Osteopath and she has been working on my shoulders, ribs and neck. She said that my ribs on my left side are compressed and are pulling on my neck, shoulder and jaw when I breath. She has also said I've a faulty breathing pattern where I breathe from my upper chest rather than my diaphragm. This has put strain on my neck muscles and in turn my jaw...it's all interconnected. I've feel so much better now but stress and barometric pressure seems to trigger ear fullness but it goes away after a couple days. I would say that I'm 95% better but believe I can get to 100%.
Please help...I've had this for 30 years, I'm 52 yrs old.. I'm NEVER normal and its ruined my life. I also have Generalized Anxiety and Panic attacks. Bipolar 2 disorder as well. I have numerous symptoms, many similar to you, and some different....I feel trapped, I have the phobias in many situations and have a hard time sleeping, going to malls, heights etc...life has been a mess at times. Any advice? What type of therapy did you do?? Do you suffer from any mental illness if I may ask...Thank you so much for your insight...
So sorry you've been struggling for so long. The things you feel can also be the result of an anxiety disorder. It's all very confusing. Not much I can do to help you except encourage you to seek out answers by continuing to talk with doctors that may be able to help you.
Lindsey McKelvey I understand that. Even when I don't suffer with the anxiety and panic I still have equilibrium/ vestibular and visual issues. Thank you for responding back.
Help me! What are the drugs for that? I have the same symptoms for five months. It's terrible! :'( It repeates every two weeks and lasts for two weeks. The question is: does it heals without drugs and vitamins by itself? Keltican forte - b vitamins doesn't help.. Thank you!
Hi iv got this also suffering terrible depersonalization with it, what will help me with this whole thing? Does the depersonalization always go away im two months in super fed up of the disconnected feeling from my body its unbelievable i need help 😔
im glad to see that you've recovered, ive been sufferring from this or something similar for a year and 2 months now. what physical therapy did you receive? watching this gives me hope as every day my anxiety and depression is bad suffering from this and Im trying to find my way forward but its very hard, these recovery success videos is the only thing that gets me through living with this lol
Calming the anxiety was my major lesson. I’m 4 months in now. Feeling better now... still have ups and downs. I still feel quite woozy and weird. Feels kinda like I’m laying on a boat. But it feels okay during the day now! Evenings are worse.
I can’t wait to get over this. Never again will I take my health for granted.
Missmj X How do u feel? Never ever take anything for granted 6 months in n I can’t wait for the symptoms to go away! The swaying balancing rocking back n forth is the worse feeling! Only 50 percent better hope to get to 100
For how long did you have the confusion brain fog? Had this for a month and its a horrible feeling.
I hear ya doll. The quest to be well will end with reward. It’s the order of the universe.
@@susanthuwaini3139 your going to recover hun:)
Coming back every few weeks for that hope. You’re an angel Lindsay! X
I've watched all of your videos and wept through each one, as I see me in you. I am so grateful that you took the time to give those of us that are suffering some positive hope and buoy our spirits when we have little to go on and no real resources for dealing with the fear and other psychological aspects that come with this sudden, devastating and debilitating illness.
, too, was formerly very athletic and have had some injuries and traumas that have proven life altering. This vestibular neuritis is like another nail in the coffin for me, as I was JUST recuperating from back injuries and beginning to start back into a fitness program to try to become the healthy lady I was. Then I was struck suddenly with vertigo.
I am in week 11 now. I feel fairly grotesque most days. I have some underlying conditions that prevent me from taking SSRI uptake types of meds for the depression but have found one anti anxiety med that I can tolerate. I am also going to my 4th vestibular rehab therapy session today. So far, I have felt worse instead of better. I have been to emergency a number of times with brutal symptoms and due to being given anti depressants that were not metabolized by my liver. Very scary!
I have hope that I will recover but have the same fears, depression, anxieties and ongoing symptoms that you relay, as well as a few other thrown in for good measure. For me, I cry every morning before I open my eyes as I am terrified to get out of bed, expecting that I will be just as sick and useless as the day before. So far, this has proven to be the case.But I know that it WILL get better! Finding your videos has bolstered my belief in that!
I appreciate your warmth and choosing to share the good in this seemingly relentless and hopeless situation. We need that. We need to know that, in some cases, this can be fixed!
With heartfelt thanks and appreciation! Regards., Leslie (Graehme's girlfriend using his youtube account!) from London Ontario Canada!
Aww, Leslie. Honey, keep on keeping on. Cry cry cry and then get out of bed and do the things that make you feel terrible until they don't. VRT made me feel worse initially, but just remember that's a good thing. It means youre pushing yourself. Doing the stuff that makes you feel sick. Eventually, it won't. you just have to keep pushing. And crying. And breathing. Find sometime small each day that brings your joy. Good luck.
@@lindsey8081 Thank you very much! I have plans to see 3 more specialists in the hopes that we can nail down the exact cause of this sucker! I will NOT let this take over my life as I have too much to do and so many fun things I want to accomplish! I will post here how things work out for me. Fingers crossed! And thank you for providing hope to others. Regards, Leslie
same here, wept through all her videos. As I couldnt articulate it the way she did.
I pray from the deepest corner of my heart that everyone whos dealing with this may defeat it soon.
Lindsey, thank you for this video. I was just diagnosed with Vestibular Neuritis and will be starting physical therapy. This is so debilitating and very frustrating while waiting to figure out what was happening. It is so hard to explain to others who have not experienced this, how you feel. Thank you again for this video.
Best of luck with your recovery! Just remember, sometimes with PT things feel slightly worse before they get better! Frustrating, but you can get through this.
I am getting over this keep the faith it will go my dear x
Lindsey McKelvey I’m fully expecting PT to be uncomfortable, but I’m also prepared to embrace that discomfort knowing that the more uncomfortable it is, the greater the reward will be.
I told my doctor about these symptoms 4 years ago...many doctors, MRI, CT Scan...nothing wrong...then my determination to find the answer, I found about about Vestibular Migraine and that I had the same symptoms. Seems maybe Miraine and Neuritis are the same or similar...lady at Big Lots today started talking to me and somehow the subject came up...she has migraines 16 plus or minus times a month...told me her sister started vitamin company and told her to take Elderberry every day...and for all the months she has been taking it, she is MIGRAINE FREE...doctors don't do much to help, so I'm doing my own thing.
@@lindsey8081 thank you for the video.. Its bin 2 and halh months. I do vrt for 6 veeks now and it's not getting any better. Before vrt i had dizzines ( like i m on a boat),
naisea, had pressure, NOw i have all this and very bad headache and sometime i Ivibrate,.
I’m about a month and half in and miserable - this gives me so much hope. Thank you so much for your sharing your story. ❤️❤️
your not alone. suffering myself..but I know there is hope
You're welcome! It's awful, isn't it? The total pits. You'll get better. It just takes time and bravery.
How are you now
@@noorshah7498 I am doing very well! It's been about a year and a half now and lots of struggles and ups and downs along the way. Don't give up hope! You will get there! Don't stop doing your VRT and keep moving!
@@MissAnnieB good to hear that am into it for about a month with lots of confusion and feelings like the ground is moving and like am on a boat and floating sensations and many more no one understands when I try to explain them they just think I have anxiety......how many months it took to feel better for you?
Your videos gives all of us hope. A BIG THANK YOU!
I just wanted to encourage others as well and agree with what you say in your video. I was living a pretty normal life and I'm at the 9 month mark. Just experienced the same set back after getting sick. Visual symptoms and other symptoms acting up. I'm going back to the exercises that helped me get better and my therapist says I should get through this quicker. So those who are struggling, take heart, take one day at a time and stay focused on this will pass and you will get better. God bless!
yes!! I love it when folks chime in with encouraging words. hope you are on the up already!
Thank you. Your video gives me hope.
I'm really happy to hear this
Ro_n BJJ have you recovered?
This is the best summary of symptoms, told in a concise way you can you identify from her account exactly where you are along the journey of overcoming this ailment. Thank you.
I’m only 2 months into my journey I have good days and bad thanks for sharing your story it helped me a great deal thank you again
5 months after my diagnosis and I am really relating. I think I am a lot further forward in my recovery 5 months in than you were but this gives me hope that I’ll one day be at 100 percent recovery. I think my biggest fear is this never going away but this gave me hope that it will eventually all go away fully❤️ thank you for sharing. What a scary journey that makes you appreciate your health more than ever.
And fyi for anyone this may help - I got glasses with a prism to fix a severe convergence issue with my eyes that was brought out worse by the VN.
I've been seeing your videos since a month that i was diagnosed with labyrinthitis (almost exactly the same with VN but w/ hearing loss and mine was mild thankfully) now im in my 3rd month and everything you said was accurate to what i am going through month to month and i was really greatful of you doing this because it helped me with all those times to calm myself. It is really hellish but thank god it gets better overtime. God bless you and im also praying for everyone who has it too.
Hlo I am going through same problem since one month please suggest me what can I do
@@jaspalrama4041 Hello, i'll say its diff. For everyone but gently do vrt at home and increase your activities slowly you'll notice that it worsens your condition for a moment but later on, for the next days you'll see it does you better it just really takes time and your brain really needs to learn continously and while doing it i'll suggest you take vitamin c, b's and d3 to maintain good immune system while at home.
@@itgirlsguideph7549 how are you now
@@itgirlsguideph7549 i have vn for two and half month now. I doing VRT for 6 weeks now and i getting worse. Did you get also bad headache and feeling of vibretion.
. Did you have also this symptoms. Are you healed?
Hello guys it’s my 1 month weird feeling with my legs while walking and feeling like I’m walking in the jumper. I asked my primary Dr. To refer me to ENT. Went to the ER 3 times and everything is normal. This video gives me hope and motivation. Thank you so much for this.
ua-cam.com/video/lc8DBjc95SA/v-deo.html
ua-cam.com/video/wnrNcCWWAws/v-deo.html. A vestibular physical therapist specialist she has 6 videos for dizziness and balance with demonstrations.
Order a bosu ball on Amazon ,your balance will improve alot quicker. Uneven surface for instability. Do one leg, feet together and eyes closed. Turn head and catch a ball.
Hi, @@life-mm5dodo you feel now, any update? I hope you are ok.
On month 10 recovery for me and going through a “setback” which is what made me google a video for encouragement🙃 was surprised to hear you had a setback at 10 months as well! I was feeling really good for about a month before this.
It’s a terrible illness but you must believe you will get over it x
Lindsey McKelvey Thank you so much for getting back to me, Lindsey. Your advice is much appreciated. I especially like what you said about pacing yourself because on my good days I tend to get ambitious and start pushing myself a little too much, and I end up doing too much or doing things I’m not really ready for, like too much intense exercise, or exposing myself to stressful situations. This tends to backfire and trigger symptoms like headaches. So yes, I’m learning about the importance of pacing myself and knowing when and when not to “push the envelope.” The first month was horrible, almost unbearable - that’s when the tinnitus and pressure headaches were at their worst. Right now I’m approaching the 3-month mark and, thank God, my symptoms subsided significantly in the second month and in this third month I feel even better than the second.
That is why for anyone else suffering from this inner ear disease I want to reassure you that your symptoms will improve over time, but healing is such a slow, gradual process that you may not perceive any improvement from day to day. However, healing IS happening and is more evident when you compare your symptoms from month to month (the second month being better than the first, the third month even better than the second, and so on). You’ll see what I mean if you keep a diary of your symptoms. The most important thing to remember is you must be patient, push away despair and maintain a positive attitude, knowing that you WILL recover from this disease. Remember, this is a self-limiting disease, your symptoms will automatically improve over time regardless what you do, but doing certain things will definitely speed up your recovery time and I do believe vestibular rehabilitation therapy is one of those things, based in all the testimonials I’ve heard.
Now, in my third month, the annoying tinnitus is almost gone - it has subsided to a whisper, and I have high hopes that even this will improve in the coming month, simply because all the other symptoms also continue improving. And this happened without my receiving any VRT therapy. But because I still have residual symptoms now and then, like ear pressure headaches and dizziness (especially when I move around a lot, or when I lie down or get up suddenly from a sitting or lying position), that’s why I think I’m overdue for VRT. So when I see my doctor this week I’m going to request VRT therapy and hopefully she will agree with you, Lindsey, that VRT is the most effective way of dealing with this disease. Until then I’ll continue doing things that I believe have helped me. Things like:
1) hypnotherapy for relaxation (check out Michael Sealey’s UA-cam videos. I think you’ll find two of his videos extremely helpful in helping you deal with the emotional and psychological impact of this disease and the names of these videos are: “Deep sleep hypnosis for mind body spirit cleansing,” and “Hypnosis for headaches and migraine pain relief.”
2) also helpful is a product called Lipo-flavonoid, an over the counter supplement that my doctor recommended for tinnitus. I’m currently experimenting with other supplements and will share the results with you over the next few weeks.
3) physical exercise is a must. Like you suggested, Lindsey, one must get out into the world, interact with people and not be afraid to live your life, because the more active you are, somehow this helps you manage your symptoms and helps you stay positive. But the key here is to pace yourself. Don’t overdo physical exercise, do whatever exercise you’re ready and able to do without stressing yourself so much that you aggravate your symptoms. As your symptoms improve and you get stronger, you’ll know when it’s time for something more challenging.
4) CBD oil taken sublingually helps you cope with the anxiety this condition causes, and it also seems to alleviate headaches and other bothersome symptoms. CBD oil is legal where I live and I take 0.5 mL if I feel a headache coming on, and take 1 mL at bedtime along with melatonin to help me sleep. This brings me to 5) making sure you get adequate sleep. Getting more rest is especially important in the early stages of this disease, but going forward it will continue playing a huge role in how you feel. Almost without fail my symptoms relapse when I don’t get enough sleep. So getting enough sleep is critical - I can’t overestimate the importance of it. Also, I suggest cutting back on exercise during bad weather because when it’s cold and raining outside this causes changes in atmospheric pressure that can actually worsen your symptoms. So be easy on yourself in those days, and get more rest instead.
6) if you believe in God, now is the time to pray for healing, and have others pray for you too because the healing power of prayer and faith is amazing.
There are other things I do that have helped me battle this disease, but I’ve already written so much in this post, I’m afraid I’ll bore you if I keep writing!
But if you or anyone else have any questions for me, please feel free to ask them. I believe sharing what has helped me may help others too, and vice versa.
I fully agree with everything you said here! So well said. I hope others read it and it helps at least one other person in the thick of it all believe that they will get better in time.
So happy to hear of your improvement. And yes, doing some VRT can help you fine tune a lot of the small lingering symptoms. Best of luck!
Thank you Rey, Im 9 months in.Takes along time just to feel normal again. The anxiety is the worst!!! Im doing better overall, except for driving by myself, Im fine driving ,its just when no one is with that the anxiety kicks in , I only drive within amile or so of home, makes for a small world. I always think what if it comes back?? It has come back ,alittle when Ive got acold, then will fade back ,but in the back of my mind the fear is there I Im out by myself.
Hi, I know you wrote this a year ago, I just came across it, I had it for over 5 years it comes and goes, mostly its part of my life PTSD, tired, lightheaded, woozy, lights are a problem, I take over the counter med for motion sickness along with anxiety meds so that I could have somewhat of a normal day. I have been to therapy for 6 month, still the same. It's an adjustment, I make the best of it everyday.
Hello reyberreto. Has your tinnitus disappeared?
Thanks so much for posting your experience, strength and hope, Lindsey. I'm 16 days into this and I'm absolutely terrified. I found your video, while crying, freaking-out wondering how the heck I can make it through this. Thank you for inspiration to see things through.
It goes away eventually I am after 10 months solid but I still do vestibular excercizes every day I feel it’s critical. Was bad for me for 3 weeks…..then ok for about about 3 months then slowly was ok …..now november and noticed some dizziness so started doing the vestibular excercises and feel better
I'm so so happy for you. Your story has been so inspiring as I feel like I'm noticing similar milestones. Cheers to feeling GREAT!
Sarah how are you now
Thanks so much for sharing! 7 months since major episode and 2 months into therapy after finally figuring out what happened with help of a good neurologist. One of the biggest struggles has been describing the symptoms and getting lots of strange looks from people when you try to explain them and how debilitating it all is. So many of my symptoms and recovery are just as you had. Helps to hear that there are others out there and you continued to improve even after a year. Thanks for posting!
Hello , how are you doing now ?
@@cristhiandiaz1149 I'm doing much better, thanks for asking. I have had a relapse or two, but, clean diet and stress reduction really help.
I understand. Glad you are better. Me too. The symptoms were crazy.
Thanks for the update Lindsey. Happy to see you back to your normal self.
I was feeling better around 85%
But then I caught a infection and it's knocked me off again..
I'm back regularly doing my vrt again..
I have anxiety too it's a terrible what a fight. I've found ashvaghanda and Gaba really helped me with this.
Thanks for the timeline update you have helped many.. X
Those annoying infections! Gah! You'll bop back to where you were once you are feeling better, I'm sure of it. The anxiety makes it so hard. Glad you've found ways to cope with it. Cheers!
im about five years in. pray for me pls!
What's your name? And what treatment are you on?
You can do this
be healed in the name of Jesus.
Thank you for your very encouraging updates. I'm going on month 10. My symptoms occur daily but are manageable. I have a slight ringing in ears. The main symptoms are strange visuals, fatigue, odd sensations while walking and slight anxiety. But, I am functioning on my terms. The improvements are very subtle. One thing that I have had to adjust to is the enjoyment of a couple of glasses of wine. I pay the price for that. So, I backed off. As I look back I can recall having many of the symptoms for years. My doctor attributes these to possibly being due to a severe ear injury I suffered as teen when I got kicked in the ear underwater. My eardrum was perforated allowing water and debris to be forced into the inner ear. He also thinks my compensation ability has decreased due to my age (68). I am glad that you are doing well.
Best of luck and well wishes coming your way! Sounds like you've found a way to live even with the annoying symptoms. That's great! Keep on keeping on! Who knows, it could still get better. I thought I was as good as I'd get around 9/10 months and I got better from there even. :)
Hello Has your tinnitus disappeared?
Thank you for being so open and vulnerable to post this to the community. One week ago I hadn’t a clue what VN was, but after being hospitalized last Tuesday, terrified, and getting the diagnosis I’m learning quickly, and your videos have been a source of calm reassurance. I really can’t thank you enough.
Lindsey, thank-you for your very detailed description or your Vestibular Hypofunction. I am a Nurse Practitioner who developed Vestibular Hypofunction in November 2018. Your are a very articulate patient who described in detail the symptoms you experienced. Neck pain is often cause by an increased activity of the Cervical Ocular Reflex (COR) that is trying to compensate for the loss of the VOR (visual ocular reflex) that is often associated with a Vestibular Disorder. Balance is a reconciliation of visual + vestibular +proprioception receptors. I suspect that Neck pain in patients with Vestibular Hypofunction may be due to the over stimulation of the Cervical Ocular Reflex (COR) which is aggressively engaged in trying to replacing the normal VOR, which was damaged during an Acute Vestibula event. Good news is that VRT and re-engagement of normal activities promote recovery.
I would have LOVED to have known you when I was trying to figure all of this stuff out! After a while, I realized that it was all connected. The balance system is fascinating.
Lindsey McKelvey I am encouraged to move into a NP role dealing with vestibular disorders. Make no mistake, this is not over for me , and like fellow patients with BVH, recovery is measured in months and years. Sharing our experiences is a very important portal for new patients caught in the fog and disorientation that will, over time, improve.
Thank God you got better from this. Its hard to have hope...that is what this video has done for me today. Thank you
Thank you for sharing - it is helping knowing people struggle with the same. I have all the symptoms mentioned. First made me feel very anxious to the point where I was scared to go out and just stayed at home and ended up with pretty awful anxiety. Then I went out walking and it put me in a different spot - feeling hopeful, endorfine in the body but unfortunately today after walking a bit, I felt quickly off balance again and was scared of falling so went home. When I stopped I could see the pavement moving until it settled. So annoying, all those visual symptoms. I try to meditate, take cold showers everyday (not sure if this is gonna help but listened to Wim Hof so decided to give it a go), I listen to a "feeling safe" meditation a lot and practice mindfulness when walking - each negative thought I try to replace with a positive one. Also I changed my diet - I used to have a sweet tooth - now no sugar, alcohol, gluten and diary - I can see the impact of the diet is positive but still long way to go.
I also want to stress, that I believe that my situation was triggered by intensive use of the smart phone and PC screen. I am sure that they messed up my vestibular system. I don't say they are not other triggers but literally I feel like my brain was overstimulated by the overuse and something got wrong. I would warn everyone from using them too much. Also my thyroid doctor thinks it may something to do with estrogen dominance....just throwing it out there. I wish everyone to get better soon!
Thank you for sharing your story. Good luck on your journey towards wellness. Seems like you're headed in the right direction
I agree. I think smart phones contribute a lot to this too! Not everything, but a lot.
Hi @hhh h how are you? We have the same symptoms esp the ground moving after coming to a stop. Have you been diagnosed? Bec. Doctors here doesnt seem to know a lot about this
@@annam5057 so I've been diagnosed with vestibular migraine a while ago. I got lots of migraines (4x a week) to a point it impacted my work life etc. Long story short, after a while I found a doctor who correctly diagnosed me with histamine overload/intolerance. I had to cut off all histamine (very difficult) and after first day of the diet, my symptoms diminished by 90% (I know, incredible) so I kept being on the diet. Now it's been a year and I walk, swim, do yoga etc. Have had about 2 episodes of spinning head when looking at the computer in a year. Migraines gone. Still not great with stability (I can see when doing yoga or long distance walking) and it tends to get worse when I sin with my diet. Also, I got my gut checked and they found out some bad streptococcus and leaky gut plus very low level of good bacteria which I got treatment for and will seesoon with my next test if its healed. So to summarise it - in my case it's been all gut health issue (the gut - brain connection). I have to eat a lot of leafy greens every day and no histamine food. I had to completely reorganise my cooking, first it was very frustrating to a point I didn't know what to eat as everything caused my reaction so I ended up eating rice and mango. Now in a place where I know what to cook. I completely eradicate sugar from my diet (just fruits) and that's been in my view the most impactful and positive step for my health. Before my diet, I eventually 'collected' around 30 neurological symptoms. now I feel really good yet my healing is still not complete. I wish you all the best on your journey!
Thanks for your video. I have had this for 4 months and the anxiety is so challenging. I’m glad to see there is hope!
There is hope! Hold onto it. The anxiety was probably the worst part. Sending a big hug your way
@@lindsey8081 thanks had a bad week and that means a lot
I'm so happy for you. Its great to hear good news. I've been like this for going on 10 years.
Thanks for making these videos. I am in my 5th month, and still feel woozy and floaty often. I work on a computer for work which has been a struggle and sets me back. I hope that I will recover fully like you did!
Hi Chloe, I feel the same way. How are you feeling now? Did you ever get a VNG test?
@@SheilaBRI have improved a bit, I can do 8 hour days on the computer 3x a week now, it’s tough and I have to push myself. I did the VNG test and my results came back normal. The audiologist mentioned I could be experiencing vestibular migraines.
@@ChloeWarren-fz8gp Hi Chloe, did you do a VEMP test as well? How long have you been experiencing symptoms? Also, did you do one-on-one vestibular therapy with a physical therapist? Thank you so much for your help!!!
@@SheilaBRI just did the VNG and caloric test. 6 months so far been experiencing symptoms on and off. I went to a physical therapist for a few months and then stopped and continued to do the VRT excersise at home.
So glad to hear you’re back to normal! I was diagnosed with Vestibular Neuritis, I’m at 4.5 months and was getting better after 2.5 months, then had a huge relapse which I’m still struggling through. Symptoms exactly the same as yours. Now doctors are saying it’s Vestibular migraine! Did they ever mention that to you?
It was mentioned as I was trying to figure out what I had, but my symptoms (and the clear results on my VNG) didn't really sound like VM so I kept moving forward with VN treatment. Who knows, maybe I do get vestibular migraines here and there. I've had ocular and the regular migraines in the past so it wouldn't suprise me if I had vestibular ones, too. But, I've haven't had many migraines in the past year. It's been glorious (I'm wondering if taking lexapro has helped with that- it does for some people)/
Lindsey McKelvey I just started Lexapro last week after seeing a psychiatrist who also suspects severe anxiety from VN. I’ve had occasionally bad headaches in the past but I’m not buying the Vestibular migraine diagnosis. I go back to the ENT in a few weeks for additional testing so may know more then.
thanks for sharing your experience! It gives me hope and I can feel more relaxed about it!
Hi , how are you feel after tree months ?
Such a great video, wonderful to find a positive video. Ive suffered with vestibular neuritis for about 6 months, i am on the mend now i feel. I had all the symptoms you referred to and its great to hear you talk about them as it confirms in my head that they are all "normal" with this condition. I plan to go back to work probably end of september, and hopefully ill continue to improve. Thank you for a positive video on this condition. Best wishes!
good luck getting back to work! going back to work could flair some things up for you a bit, but just remember that getting better has some humps, totally normal!
@@lindsey8081 thank you, i have had a flair up these last few days after feeling pretty good for a few weeks. I return to work end of this month. I have booked neuro physiotherapy in a bid to improve things further.
Ive watched ure videos a few times now when im feeling down.
Thank you again and all the very best wishes to you.
Hi Lindsey, I found your video about 2 weeks ago. I am so grateful to have found it too. I have been experiencing all of these symptoms for 3 months now. Gone to the ER numerous times only to be told there is nothing g wrong and that I need to maintain my blood pressure and was given meds for depression and anxiety. Things that I've never had a problem with before. I had never heard of this before you posted a video and I googled my symptoms. The Neurologists are saying I have migraines and I know that's not it. I have a Doctors appointment tomorrow and I'm gon a mention to her again, that I still have imbalance m, tingling in different places and can't really focus. I even got my eyeglasses prescription changed because I thought it was my eyesight due to postpartum after having my son January 15, 2019. All of this started at the end of February. But looking back I did have a nasty cold and a history of tinnitus while serving in the Army. I'm not big on taking meds so I am open for the VRT if they offer it to me. I actually experienced this last year and never was told what it was. I feel like the Doctors then and now weren't very aggressive towards finding the problem or solution. However, this time will be different . I'm a Mother and wife and I don't have time for this. If it is something that's lifelong I want to find the best way possible to combat it and manage. My symptoms are decreasing little by little but I want a medical professional to tell me for sure and then explain to me because I have so many questions. Like where does the tingling come from? Does the ENT Doctor do the testing or Neurology? Is it hereditary? My son just had his second surgery for tubes being put in his ears. I'll tell you this, when I saw your video, it immediately gave me hope and happiness again!! I wanna thank you for posting it and being very open and thorough with your journey. God bless you 😘
Thank you for your response! I'm really glad to hear that my story has given you hope. It is a hard journey. But in the end, when youre feeling better and saw how strong you were, you have such a great sense of pride in your strength. I found that it was up to ME to get the docs to push for answers. I had to research and advocate for myself. Push for tests to give you definitive answers. Have your doctor line you up to get an ENG (it will give you a clear understanding on whats happening in your inner ear...if nothing shows up then it could be vestibular migraines). I don't think it's heriditary because its a viral infection that generally causes it. But. That being said, I think family members can be prone to certain illnesses because of their genetic make up. I think my mom may have had this in her 30s. She was never tested.
Dear u do eng test first...same phenomenon and treatment happened with me at last dr told me to do eng and report has csme that vestibular lesion in left ear
It's so good to listen to your story. Thanks for sharing ♥ 🤗 🤗 😘
These videos give me hope, THANK YOU
Thank you for your videos. I really needed some hope ❤ you are wonderful!
Grateful for your sharing!
Great video, Ill rewatch on my darker days.
Good! I'm about to put a 2 year update up...I'm still doing really well! Very happy and healthy. You'll get there. One step at a time.
Thank you! So encouraging, so helpful!
My symptoms started in Oct 2018 and still dealing with it. Your video gives us hope. I too have to hold my head and people would wonder what I was doing. Also that I was faking and just being lazy
No one really seemed to get it. I felt like I couldnt communicate how terrible I felt without sounding like a baby.
Feel happy for you
Hey thank you!! That makes me smile :)
Omg this. I’m going through the same, sometimes my anxiety makes me believe I’m going to die, I’ve seen like 15 doctors non can really tell me what I have but I have exactly the same symptoms, it’s the middle of summer and all my friends are going out and doing things and I can’t even leave my house, as a very active 21 year old this is really really causing my depression and THE WORSE anxiety, sometimes I feel like I’m going crazy, I can’t go to work, can’t study, go out with my friends, do normal stuff and I’m devastated.... please if you have any tips for me I’m all ears... your video helps a lot because it makes me really believe that’s what I have and it will get better at some point...
Theres a great Facebook support group called vestibular hope. Check it out. Folks can help you figure out your next steps to help reach a diagnosis. You can also search the page for heaps of good information that's already been posted.
Hi I know how you feel, if you go to Wal-Mart they sell over the counter motion dicived med 50mg each for $5.00 you get 100 tablets the brand name is equate they have really help me out, I take one as soon as I wake up some times I don't need to take another, hope this help out with the symptoms
May I ask how are you feeling now and did you find out what’s wrong with you?
Lindsey,thankyou for your story.
I woke up got out of bed and down i went.spinning.april10,2019.My husband was at work,I was home alone.we live out of town.the worst feeling i ever had in my life! It would come and go .I stayed in bed most of the time.I was afraid to go to sleep,would it be worse when I woke up.......I never had anything like this befor.Im 55 years old,in good health.I waited til sunday ,4 days later my husband took me to urgent care.I was told thatI had bppv.Go home and do neck exercises and find on utube maneuvers for bppv and do this for 5 days.At the time I thought wow this is not anything real serious,I can do this!after doing neck and maneuvers3 times aday for 3days I was good did one more day of maneuvers 4 total days.waited one more day befor going anywhere.thankgod I was not working at the time.I got acall to go back to may1.may7 woke up with abad headache neck sore took some aspirin and went to work.As the day went by I started to feel alittle off to the right not dizzy, just feeling not myself it would come and go.Next morning felt worse,went back to urgent care may8.By then my right side of my body was numb and horrible headache rightside balance off.They sent me to the ER.they did a complete blood count,Imaging test cta head&neck&mr head wo contrast.Everything was good.told me that I had Bppv .go back and do my maneuvers and to follow up withotolaryngology and neurology appts.ear doc.june12.hearing test.GOOD! The ear doc.said that I had residual calcium in my ear still and to do balance therapy.I was doing therapy already .By the end of june I was at 80%.at the beginning ofjune I was 80%.Also at home I would do exercises.I was not getting past80% somedays I would be70%then back to80% .I told the theraphist Im not getting past 80% that Im going hold off my apps.and wait to see the neurology Doc.july24.takes forever to get into these places. I made my appt. on may 9.10 weeks.so between may8 and july23 my life as I knew it was gone!!!I wake up in the mornings wondering if this is going to be a good ,ok or abad day.I would only take a shower when my husband was home,I would do that and take care of the animals befor he left for work.I was afraid of falling.the rest of the day l wouldent move around much,always have my phone on me.My anxiety was bad.I was living in the movie GroundHogs day. Couldent work ,dident leave the house unless someone else was driving.Im still doing my exercises and watching alot of utube. Thats where I found your story Lindsey, I have the same health proplems,so I wrote vestibular neuritis down.july1 getting up to 90% then went into abig outlet store,somthing happend felt sick weak,like wierd! For afew days back to 80%.then back to 90%.I went to my neurology appt. July24 I was with the Doc. 10 mins.and she says the words vestibular neuritis.I pulled out my paper and showed her, told her about your stories.I watched your stories again this morning.I have never done a public reply,I wanted to share with others ,and ImSo happy for you !!!The doc put me on two meds. I start vestibular therapy friday,ck back with neurology Doc. Next month.Thanks again!!!
im not sure if you will see this message in 2021 but i am so happy to hear this! i had a weird tunnel vision attack driving in november of 2020 and from the moment on i was so dizzy. been in VRT for 3 months and just about to finish up there. id love to chat about everything if youd be open to it!
You are so great. Thankyou for your videos
has anybody had any symptoms where they have walked for a while and stop and then see everything spinning?? i’m so confused with what i have
Lexapro can make you feel really good! Except I can't take it because it flares up my IBD/Crohn's. I just realised that if this is what i've got, I've had it for over a year :( I have all of these symptoms and I've been to the ED twice during that year and they did nothing, said nothing, diagnosed nothing and sent me home. As I was getting up off the hospital bed (as they were throwing me out) I almost fell over - if it wasn't for an orderly that was passing by me that grabbed my arm. The nurses saw it, but they sent me home anyway. If I DON'T have this and I have MS or something like that, I am going to sue the arse off them! I'm so glad you're better. Louise, Perth Western Australia xo
Thank you so much for your videos! You have no idea how much these have helped me. I'm 2 months into my recovery, and it seems like I have days that go well, and days where I'm dizzy 24x7. Did you have days where you seem to regress? It seems like every day it's a roulette wheel of what symptoms I'll experience that day. Your videos provide hope that things will get better. Thank you!
Yes, I never knew what a new day would bring. Sometimes a great few days would be followed by some crummy days. It's ok. Dont fear it. Just breath deep and know that your brain is working on compensating and there just might be days that are a struggle.
For anyone reading in similar situation or that is just starting out on this journey, I had this happen completely out the blue around 6 months ago, July 2020. The world started spinning out of nowhere when I was watching tv, it felt like I was very drunk without any of the fun, constant tinnitus, sore/ stiff neck, headaches, nausea and general vertigo. I had a CT, MRI and all clear, so expected Labyrinthitis. It took me about 4 weeks to regain my balance properly, but was easily tired out if i went out, sensory overload, but I always tried to do what I could to stay active. I had two further relapses of vertigo and balance set backs in September, not as bad, but recovery was also slower. It's now January 2021 and just last week I feel that my balance is fully restored. Before that the lingering thing was if I looked up to the sky too quickly I would fall to the right. The tinnitus remains constant, but I'm feeling much better, running 5 and 10k's, no longer any balance issues when I quickly move my head. My sleep has not been good since July, I think the tinnitus keeps my brain always active, but hopefully in time this will also improve and I will make a full recovery. It's not pleasant, but I felt getting the scan and knowing it was nothing life threatening was an important first step. It let me accept it, try to understand it more and do as much as I could without the fear of what else it could be. Stay active, eat well, exercise, get out and about and try to stay positive. Although it's frightening at first and quite tiresome and limiting at times, there are worse things that happen to many people every day, so be grateful for what you CAN do, and hopefully you will recover in time. Namaste
This was almost exactly my experience and the vestibular therapy helped but gotta stick with that gotta keep moving. Even if you’re uncomfortable go out go for a walk do it ….try to drive I forced myself to drive probably wasn’t the smartest thing to do but I did. But have to keep moving
May I ask how are you doing now?
Hello Ally jack 77. Has your tinnitus disappeared?
This is very helpful. Thank-you.
I had a massive stroke knock my balance off eye and ear not working right balance off too
I have this and I don’t know what to do. I feel hopeless. What type of exercises did you do? I’m so thankful I found your video.
there are heaps of vestibular exercises on you tube you can do. I did them all at some point or another!
Hi Lindsey, can you share more about what physical exercises you did which helped you in the fourth month? Many thanks in advance ❤
Lindsey I really have a hard time finding other stories like yours. Im on month 7 and the anxiety is the worst. Im fully capable of doing whatever I want, however I still have a weird sense of self and occasional dizziness. Im scared that you are the exception to the rule and everyone else lives this way until death.
I had that fear, too, but I really think it is just that- a fear. It's not the reality. I've talked with numerous docs and physical therapists and I've said that to them- they all have said the the MAJORITY get better, but it can take a long time for some of us to stop showing symptoms. Best thing you can do for yourself is start working towards calming the anxiety. Go to talk therapy, start a yoga practice, write, cry, pray whatever you have to do to set up a routine that helps you get ride of the anxiety. The anxiety will not serve you and will not help you in your healing process.
Lindsey, I'm starting month 8. Im working on the anxiety. I had a decent day up until about 5pm. I pushed too hard at physical therapy and it wipes my eyes and brain out. Im not stopping until this is over though. Thanks for your continued support and responses to everyone
Thank you for this! You have described how I feel exactly. I’m 5 months in and still having bad days. I am looking to get back to work soon!!! You have given me hope!! Thanks again ❤️
You're welcome!! Keep your chin up as best you can. It's hard, but we are stronger than we think we are.
Thank you so much for this update! About when would you say the spongy floor feeling finally went away?
The spongy floor feeling went away after about a month for me, maybe sooner. It was daily for the first couple of weeks.
@@lindsey8081 Hey Lindsey, did you suffer from oscillopsia? Did the horizon jitter/vibrate/jump mildly when walking/running or even chewing? Did that subside over time? All the best, Aila
Thanks so much for sharing your progress and hope with us. Just wondering if you are still taking an SSRI? I have been fighting taking medication but am now taking nortriptyline. Vestibular migraines and the neuritis has been my issues.
I am still taking an SSRI. I found that it actually made me feel like a better version of myself so I've decided to keep on it for at least another year.
Hello Lindsey thank you for posting this video. I am four weeks in and I am starting to feel better in my balance. But I feel so easily sensory overloaded and cry very easily. This is not like me at all and I feel scared by this. I am happy that you are talking about the night fears, since I am having this diagnosis, I have had a lot of anxiety in my sleep, I dream that I fall and I wake up scared. I am supposed to be graduating in 3 months but I don't know if I will be able too. I wanted to ask you, is this sensory sensitivity and tiredness something that you recognize? I was very proud of myself, yesterday I walked towards the supermarket and was not that tired afterwards. What a hard disease! I want to wish everybody well 💖
So happy for you! The curve of recovery is different for many, but I wanted to know if you would share to what level of vestibulocochlear nerve loss you were diagnosed with?
Lindsey!! How many months it took you to estabilizase your vision? I am 3 months in. Hope you’re doing great! You are a superhero for many of us vestibular strugglers. Thanks.
ua-cam.com/video/wnrNcCWWAws/v-deo.html
One thing that makes ME really angry...I'm over 4 years into this nonsense and not ONE DOCTOR ever mentioned Vestibular Migraine or Neuritis...time to start doing holistic medicine!!! I'm NOT into meds plus my doctor said some aren't good for people my age...a lady who has serious migraines for years, started taking Elderberry and has NEVER had a migraine again. I'm getting some tomorrow. THANKFUL you are doing so well and STAY THAT WAY! By the way, today is January 21, 2020.
I have als neuritis andere have sometimes a headach and Cold all of my face. Dont know if i have migraine too?
Hi.! Thank you for your video. I’m super happy you have recovered from this. I was diagnosed with Vestibulapathy back in December and I’m being dealing with this since mid November. I’m going into my 5th month. I feel that I’m getting better but my ears still feel like I have fluid inside of them like I have a cold. Did your ears feel that way also? If they did, how long did it take for them to start feeling better. Thank you again. :)
ugh yes, they felt so full. pressure. not like fluid for me, just full and pressure. It's been so long, I have a hard time remembering the time line now. All I can say is it's not an issue for me now :)
Hey, thanks for posting this. It gives me hope. 🙂 How long did you take your SSRI for?
Hey glad your recovered. How did you deal with the anxiety? And how often did you do vrt? I’ve had this over 9 months but took 4 months to get diagnosed. Still dizzy 24/7 but slowly noticing improvements although up and down, finding it hard to get out
I think I talk a little bit more about the anxiety in my other videos, but, yeah it was really hard for me. Daily panic attacks and constant anxiety. I couldn't eat, sleep, or get out of my head. I ended up seeking therapy and started using an SSRI to help calm me down and get me out of the depression I was spiraling into. VRT everyday, multiple times a day, for 3 solid months. And then when I stopped, it was because I was back at work hiking, biking, and driving everyday.
That’s good an ssri worked. I’m reluctant to try at the moment as this started when I went back on one, although it was most likely a stomach virus that caused all this. I also have m.e and p.o.t.s but this has turned my world upside down and I had half a life before. Shops are the most overwhelming but I’m still dizzy even walking and don’t really go out alone. The anxiety is awful. How did you measure progress? I’ve now been told by ent it could be migranes too so really hoping a med might help. Can I also ask were you still dizzy while hiking ect? After vrt?
@@Cockapoolady hey, how are you doing now years later? Did you 100% recover from 24/7 dizziness? How long did it last?
@ytubeact123 hi I'm much better still on antidepressants which I think helped and seeking help from a neurologist again on b2 400mg as Dr suggested but overall much better since having my son, its just bad still during my monthly cycle. Are you suggesting with vestibular migrane? That's my diagnosis
My ears don't ring, I don't spin, just woozy feel like I going to faint l also take anti depression meds to clam me down. Had 6 month of pyicial therapy Insurance would not pay for more. It's like your life is over, but not giving up. Thanks for sharing.
I’m about 2.5 months in and whilst things have gotten slightly better I feel like I’m stuck. A few days ago I had 2 amazing days where I barely noticed any symptoms and then I went back to the same. Does this happen in your recovery? Better days than others until it tapers off all together?
Yes. Exactly like that. Id have a few good days and then maybe a day where I felt like I couldn't leave the house. Eventually the good days outweighed the bad until I wasn't noticing symptoms anymore.
@Lindsey McKelvey thanks for ur wishes ..
It's been 9 Months for me but I started my VRT late after 4 months .
My spinning session is gone ..Now I'm having issues with my vision and I think it's the only thing which makes me dizzy..
I am pretty much functional now but not fully. I go to office ,malls, stores but crowdy roads are still a hard task for my vision.
I feel that if this vision issues goes then I will b around 90 percent fine . now I can say that I'm somewhere between 50 to 60.
Sometimes ear sticky ness Or fullness and Struggling with eye pain ,eye pressure and head pressure issue :(
I feel like vision is last to remedy. It was the final thing to improve for me and I see that is common for a lot of other people. Just remember, it still can get better even when you think it is probably as good as it can get. I feel AMAZING. I forget that I even had VN, it feels so far removed.
How is your vision now?
Hi please tell me how did your spinning stop I'm struggling 24x7 with spinning and with the my neck shakes horribly and I feel I'm about to faint😊
Hello.. I've been with it for 5 months now I am slowly recovering I keep having unexpected bouts of dizziness😢 I hope to get rid of it eventually my life changed because of it I used to be a driver and I really liked my job so I can't do my job at the moment😢 I have constant ringing in my left ear this video gives me hope that someday I will return to my old life and to full health💪🏼🤞
👋🏼 hey there. I couldn’t drive til about 7 months. I noticed during my recovery I’d have “set-backs” after feeling like I was getting better, but they become far and few in between as you continue to recover. Just wanted to spread some hope! I’m feeling way better than when it started last Nov.
@@lenarose4622 Thank you very much for your answer, it gives me hope that one day I will finally be free from this and go back to my old life!
Hello, Lindsey! Thank you so much for this video. I know this may sound crazy, but did you ever notice worsening of symptoms around your monthly cycles?
I notice that too. I think it doubles the symptoms and it is really hard :(
Not crazy. Totally noticed that. Things were way worse the week of my period. After about 6 months I stopped noticing an increase of symptoms around my period.
@@lindsey8081 thank you fod everything you post...you answer everything i have asked myself....been soo sooo helpful!!!😘😘😘
@@esthergeraghty5611 hi did you get bak to 100% normal
Do you ever have to do some of the vor/ eye exercises? Because I read it's normal to decompensate over time and the brain needs reminding. Especially after months or years have gone by.
I haven't needed to yet, but that makes sense to me.
I had this for years had therapy, had it for5 years, I am always lightheaded tingerling in my face head feel sometimes funny its a weird feeling had to explain bright lights crowds make me feel not part of. Yes woozy is a good word for it.I feel tired but I force myself to do things ent yes. But still feel the same.yes that's what I feel woozy and lightheaded.
Mine started since last Friday on Sunday I was singing at the church choir then I realized I cant get up anymore likely hospital located next door to the church I left the service then with lots of struggle I got myself to the emergency department they asked me for my name and address I was struggling to answer them I just handed them my driving licence they took the blood test ECG Etc then they come back with Vestibular Neuritis diagnoses everything still spinning around me I'm so confuse I feel my head will blow up eventually, my hearing been reduce on my right ear I try to walk straight I just keep going left I'm like I am drunk 24/7 I was at my class room yesterday I was asked what's 3 times 330kg I was staring at my teacher she thought I used some sort of drugs or something apart of that I am bus driver I can't even go to work now I got one week off sick I hope I get better till Friday otherwise I might lose my job
I’m suffering with it bad right now. I’m having the same experiences you had. It’s hell I want it to go away I’m so confused all day mixing words brain frog ): ): ): I just want to die
i feel you. so sorry you are suffering. I encourage you to seek out therapy for your mental health while you cope with this illness. It really sucks and the depression and anxiety that come with it are really scary. it can and does get better.
@@lindsey8081 already in therapy. isn’t much I can do as no one seems to believe me and or take me very seriously. pt finally called my gp to let them know im not benefitting from it and there is nothing they can do for me. neurologist admitted it’s probably caused by a mistake from an old cholesteatoma removal surgery I had where they also did a bunch of other stuff. just have to ride it out i guess
@Lindsey
Hey.....that was really great to know that people are getting better....
Can u pls be so kind to ans few of my questions:
1.Did u feel any head pressure and headaches
2. What were the vision symptoms..mine are like discomfort of vision as if lights are not right or sometimes I feel like depth perception is not proper.
Hi! YES. I had head pressure and headaches daily for the first 6 months. Sometimes migraines. The pressure was mainly at the back of my head. I no longer have that. The way you describe your visual symptoms matches how I would describe mine (plus a lot of other ones depending on the day!!). It's all better now! I've had a dreamy past year with little to absolutely no symptoms. Best of luck in your recovery!
@@lindsey8081 thanks for ur wishes ..
It's been 9 Months for me but I started my VRT late after 4 months .
My spinning session is gone ..Now I'm having issues with my vision and I think it's the only thing which makes me dizzy..
I am pretty much functional now but not fully. I go to office ,malls, stores but crowdy roads are still a hard task for my vision.
I feel that if this vision issues goes then I will b around 90 percent fine . now I can say that I'm somewhere between 50 to 60.
Sometimes ear sticky ness Or fullness and Struggling with eye pain ,eye pressure and head pressure issue :(
@@shardulmahadik5292 chin up. You've got this.
@Lindsey
Can u plz tell me the exercises which were prescribed to u.
Lindsey, when you did YOUR PT exercises early stage , did you do them daily? What kind of exercises did you do?
How long did you do your VRT for you? I’ve been suffering for 3 months now. I started some VRT exercises I got from the NHS 2 weeks ago and they have made me so much worse, I’m still sticking with them but it’s hard. Waiting to see a vestibular physiotherapist in 2 weeks, covid has slowed everything down, you’ve videos have given me so much hope! Thank you and so pleased your doing well! Xx
I did it daily for about 5 months and then here and there after that.
VRT made me feel worse for the first month, but that's to be expected. You have to make yourself feel dizzy/bad in order to retrain the brain not to react to those things.
Try to pace yourself. If you feel really terrible from the exercises maybe slow them up a bit so that you aren't overloading your brain with too much at one time. Get a lot of rest!!
Thank you, I’ve watched all your videos 3 times now! They give me so much hope. The dizziness from exercises seems to short lived now. So hopefully that a good sign, did you take anything for your sinus infection? I think that’s what caused mine vestibular issues, my left side still doesn’t feel right and I get head ear and eye pressure x
You are fortunate that you got better i’m happy for you i have suffered with this for years and still suffering.Did they tell you why this happened to you was it a viral infection ?
So sorry to hear you are still struggling. That has to be hard. With VN there is no real way to measure the cause. You can't go into the inner ear and examine it with out damaging everything. So, you can guess the likely cause but never know for sure. I did have a terrible sinus infection the month before. Ive also read that autopsies have shown the herpes virus in the inner ear of folks with VN. So. Who knows. I do get cold sores aka herpes. Perhaps that virus is in my inner ear. Perhaps I was sick enough that my immune system weakend and the virus in my inner ear "woke up" and reaked havoc on my vestibular nerve. No idea. I do know that 49% of my nerve is damaged. I also know that my brain has compensated for that loss and no longer sends dizzy signals when i move about in the world.
Perhaps you are dealing with more than VN? Some with VN also then develop vestibular migraines that can cause the same symptoms for years. Anxiety will also mimic symptoms (not discrediting your VN, just wondering if there is more going on on top of it). I wish you well and hope you have more good days than bad.
Lindsey thank you for responding and thank you for all the info it may be viral and just keep coming back and like you said my immune system may just have started weakening i did have lyme as well a while back but took alot of antibiotics .and my test are not showing it anymoreIt will hopefully go away someday... anyway thank you again😊
Jessica simmons thank you i will check it out😊
Hey Lindsey, did you suffer from oscillopsia? Did the horizon jitter/vibrate/jump mildly when walking/running or even chewing? Did that subside over time? All the best, Aila
Yes I did notice that. The horizon would vibrate when I'd walk, run, drive, or bike. And yes, it did subside! I didn't notice it until the 2nd month when I was getting more active again and it slowly got better.
How are you doing several years later? I am 9 months in
thank you for this. one question I have, what kind of physical therapy helped you?
It all helped! I did it all. If you google Vestibular therapy, I've done almost all of the movements at least once! If it didn't make me feel sick, then I knew I didn't need it. I'd find ones that challenged me and I would do them everyday until they didn't make me feel gross anymore. What helped a ton was just getting out into the world. Walking. Running. Going to grocery stores. Naps! Those were good too! I was so tired. Pace yourself!
Lindsey McKelvey Thank you so much for getting back to me, Lindsey. Your advice is much appreciated. I especially like what you said about pacing yourself because on my good days I tend to get ambitious and start pushing myself a little too much, and I end up doing too much or doing things I’m not really ready for, like too much intense exercise, or exposing myself to stressful situations. This tends to backfire and trigger symptoms like headaches. So yes, I’m learning about the importance of pacing myself and knowing when and when not to “push the envelope.” The first month was horrible, almost unbearable - that’s when the tinnitus and pressure headaches were at their worst. Right now I’m approaching the 3-month mark and, thank God, my symptoms subsided significantly in the second month and in this third month I feel even better than the second.
That is why for anyone else suffering from this inner ear disease I want to reassure you that your symptoms will improve over time, but healing is such a slow, gradual process that you may not perceive any improvement from day to day. However, healing IS happening and is more evident when you compare your symptoms from month to month (the second month being better than the first, the third month even better than the second, and so on). You’ll see what I mean if you keep a diary of your symptoms. The most important thing to remember is you must be patient, push away despair and maintain a positive attitude, knowing that you WILL recover from this disease. Remember, this is a self-limiting disease, your symptoms will automatically improve over time regardless what you do, but doing certain things will definitely speed up your recovery and I do believe vestibular rehabilitation therapy is one of those things, based in all the testimonials I’ve heard.
Now, in my third month, the annoying tinnitus is almost gone - it has subsided to a whisper, and I have high hopes that even this will improve in the coming month, simply because all the other symptoms also continue improving. And this happened without my receiving any VRT therapy. But because I still have residual symptoms now and then, like ear pressure headaches and dizziness (especially when I move around a lot, or when I lie down or get up suddenly from a sitting or lying position), that’s why I think I’m overdue for VRT. So when I see my doctor this week I’m going to request VRT therapy and hopefully she will agree with you, Lindsey, that VRT is the most effective way of dealing with this disease. Until then I’ll continue doing things that I believe have helped me. Things like:
1) hypnotherapy for relaxation (check out Michael Sealey’s UA-cam videos. I think you’ll find two of his videos extremely helpful in helping you deal with the emotional and psychological impact of this disease and the names of these videos are: “Deep sleep hypnosis for mind body spirit cleansing,” and “Hypnosis for headaches and migraine pain relief.”
2) also helpful is a product called Lipo-flavonoid, an over the counter supplement that my doctor recommended for tinnitus. I’m currently experimenting with other supplements and will share the results with you over the next few weeks.
3) physical exercise is a must. Like you suggested, Lindsey, one must get out into the world, interact with people and not be afraid to live your life, because the more active you are, somehow this helps manage your symptoms and helps you stay positive. But the key here is to pace one’s self. Don’t overdo physical exercise, do whatever exercise you’re ready and able to do without stressing yourself so much that you aggravate your symptoms. As your symptoms improve and you get stronger, you’ll know when it’s time for something more challenging.
4) CBD oil taken sublingually helps you cope with the anxiety this condition causes, and it also seems to alleviate headaches and other bothersome symptoms. I take 0.5 mL if I feel a headache coming on, and take 1 mL at bedtime along with melatonin to help me sleep. This brings me to 5) making sure you get adequate sleep. Getting more rest is especially important in the early stages of this disease, but going forward it will continue playing a huge role in how you feel. Almost without fail my symptoms relapse when I don’t get enough sleep. So getting enough sleep is critical - I can’t overestimate the importance of it. Also, I suggest cutting back on exercise during bad weather because when it’s cold and raining outside this causes changes in atmospheric pressure that can actually worsen your symptoms. So be easy on yourself in those days, and get more rest.
6) if you believe in God, now is the time to pray for healing, and have others pray for you too because the healing power of prayer and faith is amazing.
There are other things I do that have helped me battle this disease, but I’ve already written so much in this post, I’m afraid I’ll bore you if I keep writing! But if you have any questions for me, feel free to ask them. I believe sharing what has helped me may help others, and vice versa.
Will you do the caloric testing again to look how/if your inner ear has improved? Now i am in my 5th month of labyrinthitis (probably because i crushed my head during work with a steel construction very badly the day before.) Feels really scary. Tinnitus and every time when i move my head to the right i am "falling out of my body" and loose my balance. Can`t walk in a straight line, it pulls me constantly to the right. In the first weeks i had some improvement (the innitial vertigo disappeard) but since 2 months nothing has changed. Hope i will get better soon. Nice to hear your recovery story. My Neurologist told me that my residual symptoms will stay constantly and wont disappear. Hope that he is wrong. I am 18 (male)!!!! Cant accept this situation! Greetings from Germany
I hope he is wrong, too. Sometimes things technically don't go away but your brain learns to ignore them. Like, I still have tinnitus, but I hardly notice it anymore. I can fall asleep at night without a noise machine because I'm just not thinking about my ears ringing. It's like my brain has gotten so used to hearing it that it's become a background noise I tend to be able to ignore. Stay positive. Keep as active as you can tolerate. Generally, the younger you are, the better the brain is at compensating for the damage. I would be curious to see if the damage to the nerve has imrpoved at all by taking a caloric test again some day, but really, it doesn't matter if it's better or not because my brain has figured out how to exist normally with the damage. I feel pretty good!
Hii Baron how are you
@@nituyadav4678
It has improved, but the symptoms remained on a lower level up untill today.
Still hoping to get rid of them entirely.
Greetings
@@baronmunchhausen7727 thanks for your reply
@@baronmunchhausen7727 one day you will recover
Hey Lindsey, got diagnosed with VN. On month two, pushing through VRT. Just wondering, did you have any symptoms with sound sensitivity? I've been struggling with high pitched sounds and I'm wondering if its just VN or something else?
It's crazy all of the symptoms this disorder comes with! Yes. I was super sensitive to loud noises. High pitch clanking of weights at the gym really bothered me. As did bright lights. And motion. and like literally everything! ha. Happy to say none of these things bother me anymore. They slowly faded until they eventually completely disappeared
How long did you wait to fly? Did you notice any issues with your first time flying since you were diagnosed?
I’m 3.5 months in and starting to feel better. Really strange and rough experience. Can you recommend physical therapy exercises?
Thanks please let me know exercise how many times a day thanks again
Hello, was there a certain procedure done by your ENT to diagnose you with this condition? So far I've had a VNG test and been through vestibular therapy and had soft tissue neck, inner ear MRI and also brain MRI but no findings, still have unbalance issues. No answers, have no idea what to do.
Im glad you are recovered
Im in my 6th month and i still have up and downs
Is it normal to have severe downs at times?
Osama Dmc I am in month 5 and I have good days and bad days when I still have to us a walking stick! I am glad to know I’m not alone.
How are you know? I am entering month 4
michael corcoran I’m just into month 7 and I’m back at work for my first full week. I’ve had a phased return. It has been good but I’d say 95% as I still feel lightheaded at times and big store still aggravate my condition. Fingers crossed for full recovery soon.
kellie James you will get there!
@@kelliejames2574 how are you now
Since you did VRT 3 times a day, how long would you say your sessions were? How long did it take to notice improvements with VRT?
About 10 minutes each session about 3 times a day. I noticed changes after the first week. I didn't always feel better from them but I saw minor improvements and changes pretty much right away and could add different exercises to my routine
And also when i am walking i have disequilibrium on my right side of the body... 1year :'(
I find myself falling toward the right. Esp in small, closes spaces.
How do you feel when you fly? Do you need recovery time afterwards or are you good right away?
flying has no effect on me and it didn't when I was sick, either. on a plan you are sitting still and have limited visual stimuli messing with your brain, so all good there.
I’m doing physical therapy at the moment too, about my 6th week. How long did you go to PT for?
I did PT exercises for a full 3 months. I didn't got weekly the whole time, but I did my exercises daily, at least 3 times a day, for 3 months solid.
Emilsse Abrego have you seen improvements with VRT yet?
michael corcoran it’s definitely not as bad as it used to be, the dizziness is very slight to the point where I don’t notice it unless I think about it.
Emilsse Abrego do you still have brain fog and trouble concentrating?
Who prescribed valium
Question did your phone bother you and did that go away? What about tv?
Hi Lindsey,
I've have had vestibular neuritis for almost a year now. On top of that I developed vestibular migraine and along with pppd couple months in. My neurologist prescribed me with some antidepressants, but I am terrified of taking them because I had a reaction from one of the antidepressants I took awhile back. I keep going back and forth debating if I should take the antidepressants to see if it will help. With your situation, when you took the ssri, did it make most of the symptoms go away? Because I'm at a point where I feel like I'm not sure if it's just my anxiety that is creating these symptoms.
Days into taking an SSRI I started feeling better. By a month in, I felt mentally and emotionally like myself again. My vestibular symptoms stopped consuming me and my anxiety was gone. If I could go back in time I would have started taking them sooner.
Hi Lindsey,
Thank you so much for replying back, another question I have is, are you still taking it now? One of my fear was that if I start taking it, I was going to be dependent on it.
@@kaeeroyal3124 sorry for the delayed response, I stayed on Lexapro for about 4 years because it was serving me well and helping me in other areas of my life. I decided to wean off of Lexapro February of 2022. It took about a month to wean off and to feel back to normal. My head was a little fuzzy and I noticed that I felt pretty irritable. I weaned off because I wanted to see how I felt without them and also did not want to have to take a pill every day for forever. Happy to report the weaning off wasn't a huge terrible process and I've felt really good the past 8 months. Being on lexapro was very helpful for me and I'm really glad I took it. It's also helped me understand my moods more. I know now what it feels like to not be anxious, to not obsess over things, and to feel steady and not depressed. I feel like I'll be able to better navigate my feelings now knowing how I felt when I was on the medication.
I’ve been dealing with vestibular neuritis for 4 1/2 months. The biggest things for me are dizziness, ear fullness and fatigue. I’ve been taking 0.5 mg Clonazepam in the mornings recently and 10 mg Nortriptyline at night and I will say that since taking these meds about a week ago, it allows me to mostly function normally throughout the day. But clearly nowhere near back to where I’m hoping to be. Was the ear fullness severe for you? I can hear, but it’s just so full and throws me off balance and begins all the stress, anxiety, etc. Glad you got better!
yes yes yes. The ear fullness was bad and it scared me. Some of that full feeling though was from my neck and jaw being so tight and stiff and not actually related to any "problem" in my inner ear. It was scary though. I was so worried that the fullness meant that there was an active infection or problem in my ear and things would get worse and I'd lose my hearing or get even more dizzy. My fears did not come true and as I learned to be less anxious (deep breathing, meds, meditation) and to relax my jaw and neck (with the help of acupuncture and chiropractor) I started to feel much less fullness in my ears.
Lindsey McKelvey thanks for the response, it seems like the same day over and over, I wake up dizzy and ear full, take a pill, start to get a little better, lingering dizziness or strange feeling, late afternoon and closer to night it’s getting better, take the other pill, go to sleep... and starts all over again.
I may visit a chiropractor hopefully after this pandemic passes, but any other advice for the ear? I take vitamin D (was really low), B12, Flonase, besides the Clonazepam and Nortriptyline. Thanks again!!
@@nickdakuginow I took vitamin c, too, to help boost my immune system and maybe help heal the nerve a bit in addition to the other vitamins you mentioned.
@@nickdakuginow Be careful with Flonase nasal spray, causes extreme dizziness and anxiety.
By ear fullness do you mean like clogged? :/ im in the sane situation :/
Can you say what kind of therepy you did ? Did you do a lot of eye movements
I have that sticky eustachian tube feeling giving me a feeling of ear fullness. Mine also happened after a bad sinus infection. My blocked left ear almost feels like it is caused by my neck muscles. Did you get over the sticky ear feeling?
I had the full sticky ear feeling. Once my muscles relaxed, I felt like it got better. My ears don't feel full anymore and I can move my head around without my ears making a cracking noise. The tubes aren't back to perfectly normal. They do still make a little noise. Not much. And only if I move my jaw around and open up the back of my throat like I'm trying to pop my ears. It doesn't cause me grief like it did.
@@lindsey8081 thanks for answering my question. That gives me hope. My ears are alot better. I find trigger point therapy and accupuncture on my neck by a physio has helped me the most along with prescribed exercises. I believe that my ear problems most definitely come from my neck and shoulders.
Joanna Bates I have the same symptoms. Ear crackling when I swallow. It comes and goes. In the beginning it was a clicking. So odd...
@@hec123567 just an update... I've recently started going to an Osteopath and she has been working on my shoulders, ribs and neck. She said that my ribs on my left side are compressed and are pulling on my neck, shoulder and jaw when I breath. She has also said I've a faulty breathing pattern where I breathe from my upper chest rather than my diaphragm. This has put strain on my neck muscles and in turn my jaw...it's all interconnected. I've feel so much better now but stress and barometric pressure seems to trigger ear fullness but it goes away after a couple days. I would say that I'm 95% better but believe I can get to 100%.
Please help...I've had this for 30 years, I'm 52 yrs old.. I'm NEVER normal and its ruined my life. I also have Generalized Anxiety and Panic attacks. Bipolar 2 disorder as well. I have numerous symptoms, many similar to you, and some different....I feel trapped, I have the phobias in many situations and have a hard time sleeping, going to malls, heights etc...life has been a mess at times. Any advice? What type of therapy did you do?? Do you suffer from any mental illness if I may ask...Thank you so much for your insight...
So sorry you've been struggling for so long. The things you feel can also be the result of an anxiety disorder. It's all very confusing. Not much I can do to help you except encourage you to seek out answers by continuing to talk with doctors that may be able to help you.
Lindsey McKelvey I understand that. Even when I don't suffer with the anxiety and panic I still have equilibrium/ vestibular and visual issues. Thank you for responding back.
Help me! What are the drugs for that? I have the same symptoms for five months. It's terrible! :'( It repeates every two weeks and lasts for two weeks. The question is: does it heals without drugs and vitamins by itself? Keltican forte - b vitamins doesn't help.. Thank you!
Hi iv got this also suffering terrible depersonalization with it, what will help me with this whole thing? Does the depersonalization always go away im two months in super fed up of the disconnected feeling from my body its unbelievable i need help 😔
im glad to see that you've recovered, ive been sufferring from this or something similar for a year and 2 months now. what physical therapy did you receive? watching this gives me hope as every day my anxiety and depression is bad suffering from this and Im trying to find my way forward but its very hard, these recovery success videos is the only thing that gets me through living with this lol
If you Google vestibular therapy/vrt I pretty much did everything you'll find and kept active even when it felt terrible (with rest when needed)