1 year update with chronic vestibular migraine/ flying with mav!
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- Опубліковано 27 сер 2024
- I promised myself no matter what I will make these videos to help anyone going through this. It’s been so crucial to me to connect with people going through the same thing and more info needs to be shared about this awful condition. I’m not where I want to be but I’m not where I was and that’s all that matter ... keep going Mavers 🙏🏼🌈
Thank you for this video. I have never been ANYWHERE near as depressed as going through vestibular migraine. Extremely suicidal as well. Bedridden, extremely anxious and agitated. Absolute living hell. I’ll keep trying. This all feels like a bad dream
Hang in there! This is horrible and you're not alone.
Thanks Amy, you really explain it all so well. I've been debating whether to do a UA-cam video with my story and I think I will now because you've inspired me!
Jen E Lines aww thanks so much Jen! Honestly do it there truly isn’t enough out there and in years to come it will still be helping people :) hope ur well lovely xxx
Thank you so much for sharing your story Amy! I know connecting with others going through vestibular migraines makes it that much easier!!
Em {bliss-out.co} thanks em and ur videos are amazing they’re gonna help so many
Thank you Amy for sharing your journey! It has been really really helpful for me to see what you've gone through and your positivity keeps me going through my own experience of VM.
Erica Freestone anytime Erica sharing makes us all feel far less alone I really wish more people posted their journeys it really helps others x
@@amyshockett1662 I agree! I am considering making some videos, too, just have to get over the fear factor of having my face out in the world! Thanks again. So helpful.
Erica Freestone please do we so need more of them they really helped me in my darkest times
Hi Amy! I’ve watched all of your videos on vestibular migraine and they have been such a tremendous help!! They have helped me understand this condition better and I’ve showed your videos to my family and friends so they can understand as well. You are great at explaining how this illness works and the recovery process. I’m 6 months into this illness and have been on Effexor for the last 4 weeks. I’m seeing some improvement but still have a way to go. Please continue to make videos sharing updates and your experience!!
When you talk about Derealization I feel you.... it’s like you aren’t there... your just stirring off in space... you know what to say you just can’t get the words out right... it’s like it is stuck somewhere in the middle.
ive had this 10 years..tried everything still got it, its hell.
IVE had this 5 years!
james hilton I’m so sorry ur still suffering have u tried meds?
@@REPORODGE hi do u still have depersonalization
@@laurenbaldwin6068 Some times, but after having this condition for about 10 years its hard to tell what's normal ! is it the meds? is it the condition? is it side effects? Its hard to be positive but it could always be worse!! The longer you have it the more you get used to it! BLESS YOU I KNW HOW HARD IT IS AT TIMES!
@@REPORODGE do u think i shud stick on sertraline or stop been on few days
I have been dealing with a horrible invisible Illness for almost 2 years, and I think this is what I have! I’ve been through all kids of tests and doctors who basically say I have anxiety and sometimes this just happens. It’s such crap. And yes I’ve felt like I was dying, which caused so much anxiety and depression, felt like I was disassociating from my body, the head pressure, ear pressure, dizziness, feels like my body is swaying inside and like I’m walking in a boat, car sickness, debilitating fatigue, brain fog, etc.!! I also have very bad numbness and tingling so that’s something I haven’t heard mentioned a lot but is part of migraine as far as I’ve read. Hoping I can get a diagnosis soon now that I’ve learned this! So funny, I also describe how I’m feeling using percentages, because when I say I feel better, people assume I’m like all better, no! I’m like 20 percent better etc. haha. I also always have the hardest time explaining my symptoms to my husband!
Did you get depersonalization n deralization with this if so did it go away Nd what did u use
Fabio-
I have this condition for the last 10 years and yes it is scary especially at the beginning.Initially I did physiotherapy but didn't work. Finally I saw a neurologist and now I'm on medications, it is a combination of 4, and every 12 weeks I do Botox injections on my head . I have to say that a couple of this medication are causing weight gain but I don't care, now I feel so much better, I still have episodes but are not frequent like before. I found out that if I eat chocolate, bananas, avocados, artichokes or drink certain red wines with too much sulphites ( as preservatives )the day after I will feel dizzy. It is a daily learning of the condition.
Thank you for sharing you story. Like you said, just hearing someone else describe the symptoms and crap that we've been through helps so much with knowing you're not crazy. My wife deals with migraines too, but not these vestibular ones. I've been dealing with these for over 2 1/2 years and trying to figure out what I can do as far as work or just to feel like I'm contributing to life and the world, but also like you said, its very exhausting and knowing that if I go and do anything with a large group or go to the store, I will be down for at least the rest of the day kinda kills my want to go out.
I would love it if you do do some work out videos. I've been trying to do as much as I can, like I said, but I feel like everytime I do, I'm pushing myself to much because I feel like, " man I used to be able to run or jog 2 miles ever week, or hike miles and not worry", now I find myself having to use a walker or wheelchair sometime cause I'm so off balance or exhausted.
I know Im rambling, but I just wanted to say again, thank you for sharing and helping me realize that I'm not alone and things can and will get better.
Thank you so much!
Vn is really horrible...I am always dizzy...
Looking great!!!!! Diagnosed yesterday. Thank you so much. You are so inspiring!!!!! And I miss working out. 💌
Minkie Minka , do u feel better?😕
Thanks i know this is an old video now but im 2 years in and yes it really helps to hear other stories and hear the similarity and progress
Cheers
Neil sydney Australia
Amy -- you rock! I am on month six...with VN...for me its VRT for small amounts of success! Obviously its different, but the symptoms are the same. Love your spirit. Sincerely -- Donny
Ive had this bullshit condition for over 2 years now. I used to be megga sporty but since getting the diagnosis exercising really triggers the dizzyness and becomes unbearable - kinda sends me into panic mode after I exercise and exercise is supposed to promote good wellbeing! Kinda stuck on what to do because I hate not exercising and want to be fit and healthy!
Alexander Blake my doctor said we’re all different but I am a pt and am now back weight training 5 days a week still can’t run but hey it’s progress you’ll get there jus take it slow!
Thanks Amy a fellow VeDA Ambassador for your inspiring follow up video. Education is the key to understanding these disorders and you are doing a fantastic job educating us all. Keep up the incredible work!
David Morrill thanks so much David that really means a lot I truly hope this video helps anyone suffering but also raises awareness about vestibular disorders and how awful they really can be 🙏🏼
I am scared to death of medications! They have almost killed me in the past 8 months. After researching and researching what I have, I am 95% certain I have vestibular migraines. I want to feel my normal again SO BAD. It's been an awful 8 months. How does anyone do this naturally? I have so many medication sensitivites. Amitriptyline made me sleep for days and made it worse I thought (so I was on less than 2 weeks). Propanalol made me feel like I couldnt breath because my blood pressure is SO LOW. It made it so much worse (I was on a month). I want help so bad- I have had so many tests, so many doctors, so many prescriptions that all make me so ill.
modernrootsorg please don’t be scared of meds some can really help but also there are so many alternative too
Email me! Emmalynnjane6@gmail.com. I have had this for almost 7 months now and I have been absolutely drug free through this, I have many natural health tips and advice for you.
Thank you Amy!!!
I can relate. I've had issues for over 20 years! Just barely got diagnosed correctly. On several meds. It's very frustrating. It's hard to work with these symptoms. I carry Valium in my purse! It's very debilitating. People don't understand. I'm so exhausted.
Glad your doing better lady.i had most of your symptoms derealisation is definitely one of the worst aspects.i also get different thought patterns sometimes you think your going mad.i have never taken meds for it went through a period of high stress which I would say caused inflammation and sent it through the roof.systoms starting to ease now .thing when your going through it you have to soothe your mind a lot.but there theres always light and hope.great video.regards barry
How do you all cope with the everyday life? And not be so anxious and depressed? I cry alot..
I been living with this condition for 10 years already im so afraid of the medications.
janet martinez I felt the same BUT honestly there is nothing to be scared of
I’m trying amitripyline 10mg soon for migraine prevention. Scared of the side effects honestly,will try it when my 5 day migraine finishes...and if horrible won’t try it agsin.
Please don’t be scared if you get bad side effect u can always stop and try something else
Thanks for the video - the best I've found on this condition. Can I ask how you're doing now ? And have you ever thought about pregabalin ? X
Eve Delaney thanks so much Eve ! I am a lot better than I was my main symptoms now is light sensitivity and derealisation . Never tried pregab ? X
We're you worried about side effects of the meds you are on? Im been diagnosed with vestibular migraine and pppd. I've had it now for 7 months straight constantly. 24/7. Dizziness and lightheadedness constant. And I'm scared to take meds.. ??
Jennifer Weeks honesty yes BUT I was so ill I figured what could be worse please don’t be scared
❤️❤️❤️
Zandra Woodward ❤️❤️❤️❤️
Hi I have MAV too, for 5 years now.
I just started to see a osteopath this week. Im hopeful.
Is there a private group convo we could start?
Véronique & Charlie hey I’m so sorry :( that’s a long time what are your symptoms ?
Hi amy thanks for your videos did your vestibular caused you any insomnia?
dulce bahena It does for me
Dear Amy, I am one week ill, so new comer. Did you have your blood pressure checked? My mum had the first episode 9years ago and she recovered. She monitores blood pressure and during every episode my blood pressure was up. She is Russian and saw top neurologist in Belarus where I am from (I live in Brighton now). So I have full support and she is full of knowledge about meds however hers and mine episodes are accompanied with high blood pressure, so just wanted to check if this can be one of the symptoms. You are very beautiful and so together! I was an artist a week ago...
Plzzz help Me.,....
I feel like the ringing in the ears is louder the more stress you are under.
condoz2009 oh 100% stress is def a trigger for me too
Def worse after eating salty foods too, I find.
Oh my ringing is crazy too. I got a white noise making machine for sleep. Good luck mate.
Thanks for sharing your experience. Always helpful for us who share this illness. I've tried 25 med and some combos and disagree with you about they don't cause weight gain as some certainly have for me without increased eating. I only wish they'd helped and then I wouldn't care but they haven't. What med is it you're trying currently with the ami? Not sure I heard it right and thinking may be one I've not yet tried. I'm really looking forward to seeing some of your exercise video for us dizzies😊
Roshan Wright anytime happy to help anyway I can :) so sorry you haven’t found anything to help yet . I’m currently on pitzotifen
@@amyshockett1662 thx
Im going fly somepoint what happens for me all time is that when im on lift come off it i still feel asif im on it. I have same visio n but also electric white around everything aura always. I take epillim. I also train boxing and weights and noticed doing alot of corework helps me and yoga. I don't get headache or pain its in my body and weak arms it feels though still strong. I wear shades alot and it helps. Thankyou for the video. My main trigger is the weather humid and also close weather. Im also classified as chronic i use get 5 attacks a day. I'm also from the uk so weather in summer like not isn't the best lol. Stay strong much love. At gym i can feel ill and can be a trigger and push through.
What exactly does an attack feel like for you? I am big into the gym as well and this is killing my routines.
@@khan1waseem I can get throbbing side head migriane and visual problems and then feel weak arms legs and body. Sumatriptan nasal spray helps with acute attacks. I sort force myself through routines making sure I rest. I feel vertigo and when turn dizzy etc and good todo breathing techniques others dont understand how debilitating it can be.
Anyone has any opinions on oxygen tanks or oxygen concentrators when flying?
Hi Amy, I just wondered if you’ve had noted any improvement in your daily visual symptoms and tinnitus? I have the same daily symptoms and derealisation and they’re getting pretty annoying!
Sara Clarke , do u feel better?
I have this and it's a living nightmare! I'm on Topamax which causes me severe anxiety and depression. Can you spell the medication you're on?
I suffer from vertigo and migrines. Have you trued ingrim nasal spray from nuero for acute attacks ?
Thank u Amy, Sometimes I just hope that I die.
Toaha Sunny please don’t say that there is always hope and healing
I really really hope there is a solution and I hope everyone finds it.
Did you heal dear?
@@mv8908 Thank You Valie for asking, But unfortunately for me it hasn't been much better. But I have been going out more and more trying my best to get used to it and live with it. I realized that it is actually the most prominent way to deal with it. But it is very very difficult. I certainly hope you are doing well. And I hope everyone out there with this condition find the best possible way to deal with it. Thanks again Valie.
@@toahasunny9462 I'm healing yes ty. I'm seeing a functional medicine neurologist. This happens due to a chronic inflammation in the brain. Try to add organic and fresh garlic to your food, turmeric and ginger to reduce inflammation. Hyperbaric oxygen beds and oxygen tanks help to heal and reduce inflammation. Also if you live close to a lake or beach try to go and take the sun. Check for nystagmus on your eyes. If so, there are exercises to heal it completely. Cbd oil helps tremendously for migraines. Anything that activates the parasympathetic nervous system which is what relaxes us and allows for the body to heal. Research on this. With neuroplasticity you can recover. 💪
Any what doctor did you see in London
What’s the medication your on again ?
Hi have you found vrt therapy any help