My Journey With Chronic Illness | Migraine Associated Vertigo, Vestibular Migraines, Chronic Illness
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- Опубліковано 8 чер 2017
- Hey guys! Heres a little different type of video than I normally post. but I really wanted to share my space of the internet with people suffering. You are not alone! My journey has just begun, and I have so much more life left in me.
Are you struggling with your disorder? Now taking one on one coaching sessions! Ranging from 1 hour to 6 weeks! I’ll be YOUR personal coach to get on track with your goals and help get better! Email @ sveatroumbley@gmail.com “subject: COACH
Some of the groups that have really helped me on my journey
Vestibular migrain Professional
Migraine Associated Vertigo
Labryinthitus Support Group
Vestibular hope
These Facebook groups are AMAZING!
As always please advocate for you!
Feel free to add me on:
Snapchat Svea88
Instagram: sveaellen_t
Gmail sveatroumbley@gmail.com
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I was just diagnosed with vestibular migraines and I’m trying to come out of severe depression and suicide. I felt so alone but I am trying to fight this will all my might as it seems everyone on here is! We are all so strong! We can get better! This does not define who we are! God Bless you all.
Dont ever get to the point where you dont want to live, rebuke that feeling. you will get through it, keep the faith.
Ive seen 5 different doctors. I was suffering migraines with the auras for 4 years. Twice a year. Always triggered when i was at work. So i was certain it was stress. Than, i didnt have on for 8 months but i was experiencing vertigo and nausea which caused me to have major panic attacks. So i decided to look into it. Doctors were telling me i had sinus infection, middle ear infection, caused by allergies, inner ear infection. All the antibiotics and antihistamines i was prescribed did nothing. 3 months went by and i knew i had to look further into it. I never had a productive day. I went to another doctor and she referred me to another ent. She said i may have vestibular migrainrs or meneirs disease. My life has been sucked away. Im so scared. I cant work. I cant go shopping. I cant do anything. And know one understands how serious it actually is. I feel for you. And i honour the courage you have to speak up. I feel alone too. One person who is there for me theough thick and thin is my partner. I hope we all recover one day !!!
B J hang in there were not alone
Thank you for doing this. I remember my hell day, it was December 24, 2015. I had the exact same thing, room spinning, throwing up, couldn't move. I have gone through every symptom you have had too. I'm on Amitriptyline at 75 mg and it has given me my life back. :) I do have a bad day here and there, so it was so encouraging to hear you say those will happen. They seem to be at that time of the month. I completely agree about the life changing experience. I now cry when I hear of anyone else in any kind of pain. I was never like that before, I just have so much empathy for others now. I agree, going through this makes you feel so much more sure of yourself. Thanks for such a wonderful video! :)
T C thank you for your kind words!! I am so happy you are doing much better
This condition is horrific. I've never experienced such an energy sapping, emotionally draining time in my life as the last 5 years. Almost daily cluster headaches and migraines, blurred vision, vertigo, burning scalp, numb sections of my face, shooting pains down my neck and arms, numb fingers, light/sound sensitivity, head pressure, feeling spaced/hungover, insomnia, speech problems. It is AWFUL. I feel your pain 100%.
It is completely awful. But dont give up hope!
Do you get brain fog/derealization? I’m 6 months in and have not had one single day without some kind of fogginess. The derealization gets so bad I feel like I could just faint. I have a lot of cognitive problems too
ive had basilar migraines for 17 yrs.....took 12 yrs to get a diagnosis...pure hell, i would not wish this on my worst enemy.
Hey! I have chronic daily migraines, and really truly appreciate you taking the time to make this video!! I certainly feel less alone today, thank you 😁
Oh girllll! I hear you. Doctors are wasting my time too. Driving hours to get to them and the lack of care is just a stab in the heart every time. Every doctor I see has a different diagnosis. I've had all the test too. I had a negative VNG test and ecog test. Ecog test showed some dysfunction of fluid in my right ear. I have this feeling of rocking pretty much 24/7, 24/7 tinnitus, 24/7 ear fullness. I've never experienced fatigue before, but now I get it when people say they are fatigued. I do not have extreme vertigo. It is the most isolating, depressing shit I have ever been though. Family and friends do not get it and that makes it even worse.
Are you better?
Hi Megan how are you now? Experiencing the same
I am a 16 yr old girl who got diagnosed with migraine associated vertigo about 4 months ago and it has completely changed my life. I’ve had generally most of the exact symptoms you described and also struggle with severe anxiety because of them. I totally feel for you and what you’re going through. I’ve been through the same emotions and have felt so isolated at times, I feel like I’ve gone from a normal teenage life to missing out on my high school experience. I have improved some but I still go through severe periods which makes managing a consistent lifestyle difficult. I can’t even imagine how hard it must be to raise children all the while dealing with this disorder, you are a superhero! There is so much unknown about this condition and it’s very hard/ complicated to understand because it’s not something others can see! Thank you so much for sharing your story, I really appreciate this video it gives me a lot of reassurance :)
Thank you soooooo much for this video! FB groups helped me too. You just pretty much described a moment I had out of the many symptoms of almost going blind I experienced the ER couldnt explain. I just started back my journey for treatment and this video was so comforting. Thank God and I can't thank you enough!
Love you and your heart. Thanks for sharing. Let me tell you my story. I was 34ys old 9 yrs ago.. I was sitting down talking on my phone when suddenly I lost all my hearing in my left ear. I got up and had extreme vertigo. Was very sick for about a week before I went to the ER. They told me it was a uti. Sent me home with antibiotics. Least any better actually worse and went back to the ER. Then they told me it was inner ear problem and sent me to a Ent. They told me that it was a virus that was likely to blame. I was bed ridden for months too. Had to go on medical leave for 4 months and meanwhile was sent for physics therapy to help me regain my balance and learn to walk again. I struggled through this with Dr 3 different Dr telling me there is nothing else to be done. It's been 9 yrs and I still have really bad days. I actually went to another ENT a few yrs ago and she said she thought it was vestibular migraine. But then I lost my health ins. A year ago I had to quit a job I had for 10yrs cause I couldn't go to work due to feeling this way. I was about to get fired for missing so many days. So I'm at a loss. This past week or so I've been very sick with it again. I've been dizzy lightheaded very fatigued and just feel yucky. No one understands any of this around me. Unless you have been there.. people don't understand. I feel the anxiety the loneliness and frustration. Daily activities and the family things I often don't get to do... did you get lightheaded too?
Thank you for this video! I see that I'm not alone...My nightmare started January 2017, I had started a new job, problems in my house because of an aggressive neighbor, planning on moving out, recently got married, so, It's definitely the stress. Also check if you have a sinus infection, gastritis or high blood pressure, it all comes down to the extreme anxiety of not understanding why the world is moving, when you're not. But get checked anyways. I'm currently on Amitriptyline 10mg, day 2, and I have to say that I feel a little bit better. I've also tried acupuncture for vertigo and it worked for a couple days, I'll be going back and update. YOU'RE NOT ALONE!
Omg thank you so much . I’ve been dealing with this since March and it almost August. I’ve been through so much in these past month and it’s taken a toll on me . You are truly a hero because I thought I was the only one going through this . The worst part is having hot flashes throughout the whole day . It’s so hard to the point I barely want to get up because of how I feel . I’m finally seeing a doctor and I just hope I can get the help I deserve.
How are you feeling now
Thank you for making me feel less alone and crazy. I've lost friends over this who accused me of making it up and being dramatic. I think that's been the hardest thing, just feeling like nobody understands where I'm coming from.
Sorry that happened to you. I’ve learned only to vent occasionally with real friends
thank you so much for sharing. I have a TBI and am going through a really rough time with vertigo. I totally understand when you mentioned your world just flipping over. I feel like I am flying a plane but my brain and pilot will just eject and I have no notice. This was so great, good luck
Just got diagnosed yesterday. I had a hard time sleeping for a week because I felt dizzy when I close my eyes. I'm so desperate to get a good sleep! And when I wake up, there it goes again. I initially thought it was vertigo, so I went to an ENT doctor, and he diagnosed me with vestibular migraine. I think there would still be bad days, but yes we're all warriors! I understand your struggle and I'm happy that you're recovering. God bless!
I want to thank you for sharing your journey with us. I have been watching my sister deal with this for months now. She was just recently diagnosed with this. It is painful to watch how much she suffers. I shared this with her in hopes of inspiring her to be her own advocate. There are so many nontraditional therapy options out there as well. Thank you from the bottom of my heart. I wish you well with your journey and look forward to watching your improvement.
Your sister is very luck to have you!
hi there! i hope you get to see this message although you filmed this a year ago. but im currently going through vestibular migraines, i finally got an answer after 6 months of going through this and seeing every doctor and specialist know to this disorder. im glad you made this video because i have never heard of any of the disorders until it happened to me. i was someone who was health as a horse and when all of a sudden i was hit with vertigo out of no where, it took a huge tool on me physically, emotionally, and mentally. i had never heard of it, and it was debilitating and slowed down my life tremendously. daily normal tasks became cumbersome, like you said you become dependent and bed ridden. i dont mean to go on a rant, but i can finally talk to someone who can actually relate. no matter how you try to explain to others that have not experience this, it is truly difficult for them to grasp the severity of being dizzy, unbalanced, and disoriented. Thank you for adding at the end of the video that there is hope and not to give up, because its so easy to want to do so after feeling this way for sooooo long.
I’ve been off work for 8 months. Going through CT scans, MRI, VNG/VENG testing. I have yet to be diagnosed with vestibular migraines. I think this is it! What you’ve explained is nearly identical. Thank you for taking the time to explain this.
OMG, so glad I came across your channel! I have MdDS a neurological illness that affects my vestibular system, and I've been struggling with vestibular migraines that were triggered by my MdDS. After a bunch of test I'm now waiting for an appointment with a Neuro who specializes in VM. And those auras you talked about, I've been having the same thing!
Ooh man, I feel you on those struggles with Dr's! And those drop attacks! 😲 this 💩's crazy!
Keep sharing your story!
Thank you SO much Svea! I was diagnosed today after months of no hope and no help. I also finally found a great GP who suggested this is what it might be and was referred to a Vestibular specialist that was game-changing. I had the exact same symptoms and isolation. It was so painful and debilitating. It was very frustrating and I nearly gave up trying to figure it out too. Thank you.
Thank you thank you thank you - I've spent the last 3 months in complete and utter vertigo hell, my quality of life plummeted down - I just had my first appt with a neurologist who suspects vestibular migraines and I've got meds and testing coming up. There has been almost nothing in the way of helpful resources for me and I'm so grateful for this video, you made me feel so much less alone in this miserably isolating experience.
Bre V good luck to you! It took me several months to get diagnosed but I was so relieved when I got that diagnosis. Effexor XR works for me....and relaxing helps tremendously. Hang in there!!
Oh my gosh. I'm crying. Because I'm finally hearing someone describe my symptoms for the past 2 years. Not all of it, I don't get auras, thank God. And I feel for anyone who does. But vertigo has been my off and on companion for 2 years now. Amongst other symptoms. Still not diagnosed. Seen a few specialists that all tell me what I'm experiencing isn't normal. And it took am urgent care doctor whom I saw when my vertigo got worse this year, to tell me it might be silent migraines. That stuck. And I feel so relieved because this just might be it! A diagnosis hopefully in the near future for me! Thank you SO much for sharing!!!
Thank you. This video felt so much like my story too. My "day" was Jan 5th, 2016. Worst headache of my life, dizziness, nausea, you know the drill! I've spent the last 2 years trying to get answers, and had the same experience as you. All the tests came back normal. SO FRUSTRATING! This past Friday, April 27th, I think I will remember as my miracle day. i had my first appt with a new neurologist. (I've been through 3 PCPs, 2 neuros, a hematologist, and and ENT) and she diagnosed me with migraine disorder. We've started treatment, and i know it's not a magic bullet, we may have to try more meds, different plans, but finally having someone who REALLY LISTENED and put a NAME to what was going on? WOW, I've felt better the past 3 days mentally than i have in years!
Thanks again for this video. There aren't a lot of folks talking about migraine, especially with vestibular involvement, so it was really nice to see another person who GETS it. Stay strong. :-)
you're an amazing courageous and resilient person! thanks for sharing. i've also been dealing with health issues and mental health issues that have made me feel totally hopeless and alone. all the best to you
I don't think I've ever watched a video on UA-cam and cried so many times. Someone who finally gets it. I am going through the exact same thing. Starting the same way yours did with the panic attacks and the assumption of MS when I went to the ER. For me it has been going on since May and I am still looking and praying for medication that works. This definitely shed some light for me. God bless you!
Hi,I've been going through this for 18 months,first I was told it was labyrinthitis but because it didn't go away I was diagnosed with vestibular neuritis. After numerous visits to the doctor,ENT consultant, physiotherapy and hospital they still can't understand why I still have it,it was only the consultant I saw last week who said it may be vestibular migraine and waiting to see specialist for that. It's ridiculous, for 18 months I've had no social life,can't drive,can't go anywhere on my own,not been able to work and about to lose my job. Feel like I'm going crazy sometimes,no one has an answer or cure for this,trying to stay positive but it's really difficult.
Hey Lexie!! I currently use Effexor 150mg XR and Clonazapam when needed. I also get botox!
Keep advocating for yourself! I was told neuritis as well. Just keep looking for doctors!
This video has come at a perfect time. I have had chronic migraine since 2006. I cannot drive on highways and freeways, because of vertigo, which leads to a panic attack. Your aura symptoms are so much like mine. Family and friends look at me like I am crazy when I describe it to them. Thank you for bravely describing your symptoms and experiences, so that people like me know we are not crazy! Right now I am in the middle of a migraine, and the vertigo is really bad. Incidentally, I have family members who swear up and down that my migraines are only stress and emotionally related. 🙄. I do worry about MS, as my Grandma was a lifelong sufferer of MS. Thank you again for sharing your experiences. You give encouragement to others who also suffer. 💜❤️
Thank U !!! Video was great... but the last 5 minutes are things I have said outloud to friends and family. Not many people I know could have gone thru this without ending up in a wheelchair or straight jacket. WE R STRONG !!!
Wow,thank you for so personally sharing your experiences.I'm from Austria and am experiencing quite the same symptoms for 2 years.Over the 2 years I got every diagnosis you can imagine.My last bad episode was two weeks ago and everything
is still moving and since 4 days my head hurts really bad.Right now I'm in the hospital because the doctors believed it is vestibularis neuritis but the cortisone doesn't work and the headache is not something you get with this condition.From the neurologist in this hospital I've got for the 100th time the diagnosis severe depression without explaining a word about my condition from my side.That I get so bad every 6-9 months did not matter for the doctor.So right now I'm quite down.Anyway,this is the first time I posted on anything but your Video really touched
and at the end I had to cry with you because I totally felt your
desperation.Thank you so much!
Hey Lovely Girl, suffering with a Vestibular viral disorder right now. Thanks so much for putting your story out there Sista! It really helped me. Yes, you are a warrior, that's for sure.
Wow!suffering it right now. DEEP DEPPRESSION AND ANXIETY!!expensive Medical expense due to transfer of doctors,Test,Hopsital bills,medication! I always cry everynight!I hope i can do this!Pray for me
romualdo maddatu how are you now? hope you are okay...
I needed this video more than life today. Bc the struggle is real. Thankyou.
Svea, thank you so much for sharing your story! I am going through many of the same challenges with vestibular migraines and have yet to find my solution. 2 years of struggle so far :( I will be joining the Facebook groups to keep my head held high in the meantime!
My long term Migraine disorder has developed into this. It's been ~3 months of this hell for me, it really means a lot that you put this up. Hope all is well.
Your video was great. I couldn’t have summed it up any better. Yes, they say I have vestibular migraines. Much much much better now...... still have issues though......I know EXACTLY how you feel. Thanks for sharing.
Thank you for making this video. I have been dealing with this for 12 years and have had 2 disability leaves because of it. Really going through a bad cycle right now and I feel so alone and defeated. I have been crying all day.
keep strong, ive had this for 20 years and only diagnosed with vestibular migraines over a month ago.. ive been dizzy for 3 months straight so far, normally it hits me different times each year for 1 or 2 weeks and keeps me from working... im epileptic and always thought it was my medicine or something ..
this has changed my life for sure for now anyway..i might have to go on disability because of this..
Thankyou so so much. I have recently been diagnosed with vestibular migraines after struggling for 4 years. So tough to go through this, nice to know we are not alone.
OMG! Thank you for this video. I have been having this same experience with my Dr's all they want to offer me is meds, no answers. Thanks for sharing 😵
Thankyou Soo much for this video, people need to understand this can actually happen and it is utterly life altering.
OH MY GOODNESS, YOU ARE EXPLAINING MY LIFE.........................., so hard to teach kindergarten and have these "sporadic" symptoms that I call "quick spins". Everything you have spoke, I
experienced and am still living. The vertigo is the absolute worst and so scary because it comes out of the blue.
Hello my sister, I am glad I stumbled upon this video. I have been suffering with vertigo and imbalance for over 3 years. I haven't been given a diagnosis by the ENTs I have seen except that I may have beginning stages of Menier's disease. But none of the ENTs could write it as the diagnosis because my symptoms don't fulfil the criteria to diagnose me as having that disease. Life has been hard as a mother and wife. Now, I am not driving at all and it's been a while since I was even able to go to the store. My vestibular therapist was telling me that she is certain that I have vestibular migrain when I first started to have vertigo (about 3 years ago) and wanted me to get on some depression medication at a low dose but I didn't know who to believe. But I am becoming more and more convinced that what I have is vestibular migrain. I feel isolated and secluded. I am glad you have your life back and are functioning normally. I pray that you continue to feel better!
Just wanted to say thanks for the video. I'm going on the fourth day steady of dizziness and auras off and on. Seen so many doctors which has been useless so far. The last year has been so frustrating. Hope you are doing well.
thank you so much for this video, I've been dealing with this for almost 2 years now, yet again going through millions of tests and going back to therapy.. your video helped so much xxx
AnnaR I'm so glad it helped!!
I have been suffering for 20 years.... since i was 5.... it has robbed me of so much..... and i just got a diagnosis of vestibular migraines last friday.
Thank you for sharing this.
I become completely useless. And ill puke and everything.
Thank you for this video. Although I have been suffering for 6 years now and been much better it's never left and now I feel like I'm in another bad patch I'm going back to my doc and might try a preventative med.
Thank you for the video! Iv had this for three and a half years now got a million symptoms everyday and I'm still trying to find something that will help, out of all the Symptoms the constant dizziness and brain fog and rocking feeling is the worst keep up the videos I'm in the uk too what specialist did you see? So glad you are doing better I need that hope!! ❤
I have recently been diagnosed with Vestibular Migraines I can relate to your story I had one doctor tell me to take 2 Advil and 2 Tylenol 3 times a day and my symptoms would clear up. I was living alone in Denver when all my symptoms hit it was horrible. I decided to quit my job and move back to California to be with my family which has helped with the anxiety but still learning to deal with this. Thank you for sharing listing to this was the inspiration I needed for today.
Thank you. Great video. Thanks for sharing. Helped and confirmed.
I had a similar road for 10 yrs I now have diagnosis for Fibromyalgia and Sjogren's Syndrome. I had my first panic attack at 5. Stress, caffeine, sugar alcohol and gluten are huge triggers. I hope your doing better 😊
Thankyou so much for sharing, I can totally relate to everything you are saying. You are inspirational
Thank god I found this video. I’m going through the exact same thing... even wrongly diagnosed with MS and vanishing white matter disease. I thought my life was over. My migraines have left lesions on my brain because it’s been so frequent and so severe with my headaches . I’m in the middle of all of this and it’s been a 2 year battle.
I will never forget Feb 3, 2018-that's when I was hit with the worse vertigo. I've had it before but it usually lasted about a week or two then I recover from it. That very day, changed my life. I'm still struggling with the same exact symptoms you described. Of course my doctors diagnosed me with vertigo. I know my body, something else is going on. I feel thats what I have Vestibular Migraine. Going to get second opinion ENT next month. Thank you for sharing.
I’m glad you’re doing better, I still have some issues I’m trying to work
This is literally my story. It’s so crazy. My day is July 24, 2017 and I’ve felt like my life was over. Today I finally got the vestibular migraine diagnosis. Now I will see a neurologist who specializes in this particularly and I pray that this is it. I too have learned myself through this process. The darkest time of life. And like you said , once I’m 100% I feel like nothing will stop me. There needs to be way more awareness on this stuff. Thank you for this video. I’m so hopeful.
How are you feeling now?
mengume hey hun I’ve gotten eater since then but I swear I haven’t been the same since, I just try to live with it. And idk why I said I was diagnosed. I wasn’t formally diagnosed.
Glammed By Ayanna Hi!! Do you have derealization and brain fog still? I’m 6 months in and have not had one day with no brain fog. The derealization is so debilitating. I also have cognitive symptoms
You are so cute and I teared up when you did! You're so strong and ibwant to thankyou for sharing your story here to give people like me hope ♥
OMG. Everything you are saying I have been experiencing. I feel like I'm going crazy. My ENT has also sent me to a neurologist, i see them next month, he said it sounds like vestibular migraines.
I am entering year 3 of my struggle with what we believe is MAV and small fiber neuropathy in a few weeks. I’m dosing up on topamax because I’m still having near daily symptoms despite being largely functional... I get a flushed face, dizziness/lightheaded, nausea/GI issues, numbness and tingling, pain, etc etc. it can be so limiting not knowing what tomorrow will bring and I only just turned 31 yesterday. Thank you for your video, it makes me hopeful that there are even better days ahead somewhere for me.
Yes hello, I have had migraines and vertigo for 15 years and this is the first time I hear it can be interrelated
Thank you for sharing your journey with this debilitating illness. I've been struggling with it for about 2 1/2 months and this week has been very depressing for me. I was feeling pretty good, and then starting feeling really bad once again. I haven't found a doctor to formally diagnose me but I have every symptom you describe, and I have a cousin who also suffers with VM. My family doctor is treating me with topiramate and it does help for sure, but not entirely. I am in the Vestibular Migraine Professional Group on facebook so I'll be seeing you on there. Thanks again...you made my day so much better xo
I hope you are feeling better!! Message me anytime if you need anything
I feel your pain - everyone who goes through this day in and out - you are F'n strong and awesome. Even when you feel like just crawling into a corner and not coming back. My Symptoms started July 2017 with a few weeks of intense "headaches" - to the point that I went to my GP (I don't like to go to the doctor unless necessary as they're already overburdened with people going unnecessarily). Pills. Then in September and October - 2 separate occasions - my legs literally went numb to the point that I could barely walk for a week each time. December it went downhill, and by March I had to beg HR to work from home full time, as I could barely walk, the nauseau was overwhelming, the pain and numbness led me to cry in the washroom stalls and nap at work just to make it through the day. Still on the road to recovery over a year later (and having a lovely nauseous vertigo day), but at least the beta blockers have helped with the headache part. Having the "headache," numbness, imbalance, and vertigo (plus associated symptoms - including photophobia) not always at the same time is some "relief." I miss Old Me. I feel forgotten. I am a shell of the person I was in the past. I'm slowly losing my sparkly and zest. It's really lonely having VM.
My daughter is struggling with similar symptoms since Feb (she is 12) and we are waiting for a paediatric appointment in Oct to then hopefully see a neurologist. It takes a long time in the uk. She struggles with light, noise, she cannot dance, look up or down or left or right without dizziness. We are struggling day to day, some days are better than others. Thanks for the videos I literally just typed it into the search and found you.
Going on 18 months now. STILL waiting to get into the neurologist. Everyday is a struggle. There are good days and bad days. I have tried natural remedies, changed my diet, ect. I want to hide in bed all day (even though it is rocking back and forth). I finally see the neurologist in August. I long for the days I can go out and not feel like crap and actually play with my children without having to lay down.
Im keeping my fingers crossed for you!! I hope you get some relief!!
I had migraines from the age of nine they were debilitating even through my teenage years as soon as the aura would start my heart would sink it got to the point of walking on eggshells questioning everything I ate the sun every light every movement it was like waiting for a killer to pop out of every corner when I turned 25 they just stopped the aura would come once in awhile but never the migraine what’s weird is I’ve never taken any prescribed drugs I just suffered through it which was so dumb I do remember two years prior it ending I would drink cans of coke and coffee daily it’s become an inside joke with friends and family they talk about how bad Coca Cola is but I always say it saved my life. It’s funny though I’m 42 and even still if I see a flash of light or look through a windshield weird I feel like it’s going to come back migraines are truly evil.
You've never had anything prescribed but you were self medicating. Caffeine is a popular inclusion for treating migraines, especially otc like excedrin. Glad to hear your symptoms changed eventually, hoping mine will too
I really hope you are doing great right now. I understand you well as im one of the mav sufferers. I was over it by medicines and treatment but right now it’s back almost two years later and i don’t know what to do. I had many side effects from the medicines like weight gain and i don’t want to have the same process all over again. Looking for more natural solutions and if anybody has a word to say, i would be glad to listen. All the best and be well!
Yours started just like mine did, My hell day was Feb 10th 2013 when i had a migraine with aura and numbness in my hands and then constant rocking, swinging with spinning and balance problems. I have problems with lights especially in stores and crowds moving around. I was put on Amitriptyline which does work but if i stop taking it, i get it all over again..been this way ever since on and off problems. Currently going thru an episode now which i've had for a month and half.
Thank You I Think You Are Awesome Women God Bless You That He Will Heal Your headaches In Jesus Name Amen..
You are a true inspiration. You are amazing!
Leah Stearns thank you for making this as the are my symptoms and finding a great understanding dr is my current goal.
I can't wait to get my life back
Yes its So very emotional and so hard xo
thankyou so much for sharing your video!! I am in the united Kingdom. I feel asif I could have written your story myself- i too was told I had labrynthitis, given steroids, nose sprays and lots of other rubbish!! I paid to go private to a neurologist and he diagnosed me with vestibular migraine. I might make a youtube video too! it's to important to share our experiences. im so glad your neurologist diagnosed you. I also had balanced tests, MRI, bloods and lots of other freaky tests. try magnesium flakes in the bath. very easy!! :) - i am taking Topirimate (topomax) in America I think. I also still have bad days. I'm not 'cured' but I also wanted it to be over too! ♡ well done! your vidoe is great xx so powerful and I feel every emotion you've felt!!!!!
Thank you so much Laura For your kind words! I hope you are feeling better!!!
This is me! I had anxiety for the year before this started and was put on Sertraline - my husband had a serious illness and was hospitalised for a month, and so naturally I was an anxious mess. In the November I had severe throat ache, ear ache and dizziness, was told I had an ear infection and sent home with antibiotics- had a bad reaction to those and tried a new one but to no avail. It just got worse and worse until I was signed off work - I was being sick, blurred/double vision, unable to walk or drive, unable to read or write, exhausted and barely able to focus on anything. I was having ear ache, tinnitus, dizziness, nausea, vision issues, brain fog, exhaustion and numbness and tingling in my forearms and hands. I was referred to an ENT but had to wait until the end of January for an appointment, where she told me I couldn’t have the symptoms I said I had as she looked and couldn’t see anything. It was so discouraging but she did book me in for loads of follow up tests with pretty much every department in the hospital. I went to audiology for balance and hearing tests, ophthalmology and orthotics for eyes and vision, radiologist for brain and neck MRIs, and finally to the neurologist whom I got to see in June. He diagnosed me with vestibular migraine and took me off the betahistine and put me on 30g Amitriptyline. I have been increasing by 10mg at a time ever since as my metabolism is so high I metabolise the drug before it can work. I now also experience transient expressive aphasia where I can’t write or talk properly (just nonsense comes out), and a sort of cascading sensation inside my head. I have only experienced the headache twice, normally I just get the aura, constant aura for days/weeks/months until we get the meds back up to the new right dose - but then I acclimatise to that dose and we start the whole process again. My neurologist told my husband that it was his job as my husband to stop me from getting neurotic about my symptoms (yeah - I know!). I am so pissed off as my work don’t understand what it is like to live with this, I can’t afford not to be fit for work, and I don’t feel that my medical team are telling me what the plan is. How long do we continue this race to keep ahead of my metabolism? Is there even a long term plan for treatment? How can I actually live like this? There is no provision for disability when it comes to migraine - so getting assistance like parking near to buildings with a blue badge so you don’t have to try and walk so far when you can’t balance. There is no financial provision for chronic vestibular migraine. I really don’t know how I am expected to lead a life of meaning and decent quality with the current set up. I am now on 120mg amitriptyline, and have no idea what to do now. It is so hard to be taken seriously, as everyone just thinks “oh it’s a bad headache - you just have to power through”. It is not a headache for me at all - it is debilitating and extreme. So frustrating. But I am so glad you made this video and I am going to go an watch Laura’s video now too! Xx
I'm from the uk I've just been diagnosed but it's been gong on and off for two years (normal migraines since I was 18) I feel researching it, it's not that well known in England? A neurologist diagnosed me with a goggle test but my GP yesterday told me to stop being anxious
I'm laying in bed right now after a bad migraine this morning. I have chronic migraines too. Mine are almost daily. And some days are worse than others like today being a worse day where I end up missing a lot of things. So I totally can relate to that.
Hi svea thank you so much for posting this I have been bed ridden for months and feel like I have no hope :( your video has made me feel less crazy ! Can I ask did you get feel the disconnected feeling like your in a dream ? Had this so much lately with neck pain and everything looks blurry :( am yet to try some more meds xx
Omg yes. Same exact symptoms, with the left side numbness as well. It was very frustrating getting diagnosed because sometimes you feel like no one believes you. Once the ENT sent me to the neurologist it was a relief.
He immediately recognized it as VM. He told me to take huge doses of B2 and Magnesium, which has helped greatly, so I haven't tried other meds. (My sister and I tend to have bad reactions to a lot of medications, so they aren't usually my first line of defense). I still get attacks occasionally. but they're usually attributable to a migraine trigger and they're far less scary when you know what they are. Interestingly, they also seem to relate to my hormones. Thanks for sharing your experience. It can indeed be a frightening and isolating experience and knowing there are others out there can be helpful.
Hello and thank you for sharing your story. What do you do if you are driving and a vertigo attack hits? Now that I have experienced this, I am so scared to drive. I have to be careful walking much less driving. How did you get your kids to school each day and go to work?? I don't even know what to do.
Thanks for this video. I have been battling vertigo/vestibular migraines for about 8 years and was doing ok up until recently maybe 2 months or 3 months ago after going through a stressful life event it came back sooo visciously and I'm starting to think it will never get better. The meds I was on have stopped working and I am so so scared it'll last so long again. I'm 29 and I just want my life back. What meds would you say worked best or any other tips???? I also have a hard time because my family and friends just think I've been really lazy lately and negative but it's so hard to keep up wth your usual activities when you just feel like you got off the merry go round and just want to throw up and stop the spinning. I hope you continue to feel better. Thanks again for the positivity
How do u feel now
I know you posted this a little while ago, but I just wanted to try and see if maybe I could get a response. I have such a similar story to you; my doctors kept saying it was anxiety and upping my dosage. Now I finally got diagnosed with migraine associated vertigo (5 years later....), and while I'm relieved to have an answer, I'm frustrated because there's nothing I can do. Do you have any tips for someone about to start college with this issue? I honestly should be bed-bound, except my parents think that all I need is to push through it. Thank you so much for being so raw and posting this!
Thank you so much for this video. I just got diagnosed of the same condition yesterday and I have been having almost similar symptoms for an entire 2 years time. Just wanna ask do you also hear a wave like sound before having a vertigo attack?
Omg. We have the same story. From them thinking MS in the beginning to feeling like being pulled down to the left. Been going on 3 years for me just now getting diagnosed with VM .
Thank you for this video. I think I may have what you are describing. I've always had migraines, but now I'm having frequent on and off vertigo. I also have panic and anxiety disorder so my doctors don't seem to know what's going on. Something triggers it and it seems to be environmental. I don't know what to do.
Thanks for sharing the video l had migraine all my life and still get them
I started with these at 17 I'm 35 it's ruined my life bc mine are worse somedays but always on my vision 24/7 idk how I've lived this long
I've had issues with migraines off and on the last few years, but 2 days ago I experienced nothing like I have had before. Two days ago I experienced an intense migraine that started on the base of my head on my left side.... I went to bed that night and woke up the next morning violently sick. My vertigo was so bad I couldn't even get out of bed. Couldn't keep anything down all day. Ended up in the ER and they gave me migraine medication and a prescription for my nausea and vertigo. It's hard because as a wife and mom of two I feel like I've failed them the last few days.
I hope I am not posting this to late, Love this video everything you said I had, I also lived in the hospital every week, what started this whole thing was clonazepam. I took this for 30 years. I went through stuff you have not touched on yet. However Migraines are staring now. Just had a Brain Spec and was told I had water in my head. Just wanted you to be aware of clonazepam, it works great ,but it's a very powerful medicine. And yes that vertigo is still here, but with a sensation of water or paste in my head right now. Glad too see your better, 16 months in for me getting worse. Lord knows?
I hope you get better ❤️ I know how awful this disease truly is!
thank you so so much !!!
Thanks so much for you Video I feel the same iv been told iv got severe anxiaty and physical symptoms are so bad Iv lost my job my relationship failing I have to young kids. My arm and face goes numb have headacks daily feel weak 24/7 and vertigo constantly feel like I’m on a boat I’m worried I’m dying I have to stay in bed every day iv been on so much tablets nothing worked it’s like ur talking everything I feel xx
I am so depressed no one understands I feel I’m failing as a mum a wife 😢😢😢😢
Girl you will not believe. I just saw an ENT because of sinus and inner ear issues (I think ETD since I have a history of it) with some dizziness going on. She starts trying to convince me I have vestibular migraines when I’ve never even had migraines or any of the symptoms other than dizziness. Like? I told her I sometimes have sinus headaches with this and she was like MIGRAINES 😂 what? I’ve done some research and watching this video solidifies for me that no, I have none of these symptoms but I am so sorry you have to deal with it! Sounds so awful. Anyway, I thought it was funny we had like the opposite problem with our doctors (yours minimizing a migraine into sinus issues and mine maximizing sinus issues into migraine)! Yikes. 🤦🏼♀️ I’m glad you finally found the help you need!
I was on all of the same meds for the same issues and now I only take imitrex a few times a month because they gave me a machine called a cefaly and also shots of amiovig which is different for every person as it goes along with your own dna. This would be so helpful for you. I not only have vertigo , migraines but also syncope
Please keep doing theses videos. I feel like there is no hope cause I can't afford insurance. Can't go to the Dr.
I hear what your saying about the aura bit. The first time I had it I totally freaked and called the ambos. Now every time I have one I prepare myself for feeling like absolute shit for 2 -3 days. This disorder sucks badly.
So glad I’m not the only one going thru this crap, it’s been 2 yrs now and Iv had mri, bloods, neurologists, scans and every doctor says I’m healthy and I’m sure they think I’m a hypochondriac and they put everything down to anxiety, this could be the case as all my symptoms started a few months after a close bereavement, this condition has ruined my life, I have no help from doctors, plus get your vitamin and mineral levels checked, even if your docs say they are fine because they only go by guidelines and everyone’s bodies are different so take charge of your own health because you know your own body better than any doctor. and get off your phones they are killing us slowly constantly looking down creating stiff neck and eyes darting backwards and forwards together with the light, it plays havoc and creates tension.
I take cyclizine when I feel dizzy which helps plus Sumatriptan for the migraines but absolutely nothing gets rid of all the symptoms completely so I’m now working on my gut health to hopefully regain the life I had before all this crap🙏
I love knowing I’m not alone! I’ve been dealing with this for 9 years and now they have come back and I’m so devastated! And no one talks about it! Because theres no Cure and everyone deals with it differently, but they can be so Debilitating, you truly need a lot of hope to get through this struggle
Thanks for sharing this video
Thank you for sharing the video. I just started taking propranolol for migraines. But I am afraid of hair loss from seeing a lot of people online saying that. Do you have any experience or knowledge about hair loss from propranolol?
I have vertigo too and I’m 16 and have been dealing with it since I was 8, it sucks
Thanks for this videio 😢
Im on Vestibular hope as well as tons of other groups. Some of us have healed this on fb with a upper cervical chiropractor. Strict diet an herbs.
I've been suffering with dizziness for years now with no end in sight. It really is getting me down now and feel like my life had ended.
I know how you are feeling 😭😭
How do u feel
@@feelz114 Not to bad, i am now diloxatine but still having dizzy spells. 😢
Hang in there I suffer too!
I also have a vestibular migraine diagnosis in addition to another balance disorder called cervicogenic headache. It took probably 5 years from the onset of my debilitating vertigo and migraines to get my diagnoses, and 3 years to have anyone even send me for a VNG/ENG. After many years of searching, I finally went to the world-renowned House Ear Clinic, and literally got my diagnosis and appropriate treatment on the very first visit. For me, nortriptyline was my saving grace, whereas propranolol had caused me horrible parkinsonian-like tremors if I was even 45 minutes late on taking my meds. Everyone responds to the different meds differently. Doctors knew I had vestibular disorders since I was an infant, but they didn't really bother me until 2010. I also got aura as a young kid, but I JUST learned that what I was experiencing was aura within the past year because it was atypical aura, known as Alice in Wonderland Syndrome. My symptoms are so different from yours. My VNG/ENG also was suggestive that my vestibular disorders are both from the central and peripheral nervous system. It's one of the most unimaginable, horrible experiences I've gone through. Stay strong. Anyone is welcome to ask me questions too!
Do you have brain fog/derealization? I’m 6 months in and have not had one day without it. It’s debilitating.
@@Jesussaves532 yep. I have those symptoms and a million others. It's a horrible battle. Did you get diagnosed or has it just been six months with symptoms and no diagnosis yet?
Natalie Edelstein do you have an email I can reach you at?
If I share it, can you tell me when you've copied and pasted it so that I can delete it from being public? Let me know.
Natalie Edelstein yep sure will!
Did you have light sensitivity? Do you find Effexor helpful?
Am so much better know but there are moments when I snap for no reason .... I think this left me with a mild case of PTSD due to the tramautic experience ...but I catch myself and try to control it I need to start walking again I got lazy and started eating unhealthy since I got better ...
wow thank you so much for this! I'm going through the same thing. I'm on topamax and I'm still dizzy. but I feel like disoriented 24/7 it's so weird and horrible. going to the stores makes it worse, I end up feeling like I drank a bottle of vodka! I've been seeing a therapist for a couple months now.. I've had every test run and I'm perfectly healthy as well. my nuerologist claims my ears are fine when I tell her I think it's something vestibular related. and she works at a migraine center too, so I'm like WTH dude...listen to me lol
i hope the Neuro can give you some guidance!! Getting on the right medication changed EVERYTHING for me!
MelodyandFamily hey r u still dizzy? I’m on topamax now for two weeks and still dizzy buzzed feeling 24/7
My started with a panic attacks as well and now I have this crazy 4 months ago I got my first migraine omg crazy pain now effected my teeth alighmentyt
Migraines and headaches are so debilitating, miserable, painful, and life changing. I'm tell you I know exactly what you are doing through I have a pulituary brain tumor and I suffer everyday
Me too , does it cause u all day dizzinness along with vertigo, the meds for it make me even worse and so sick!?