VESTIBULAR MIGRAINES - HOW I GOT MY LIFE BACK!

[@natalieeis9284]

And also...this disease needs to be recognized and we need support. I fight for it everyday

[@delphipearl5780]

You are an absolute credit to the vestibular migraine community, and to the community of people who suffer from any illness in general, I would hasten to add. What I really like about your videos is that you are truthful but you are also very balanced; you tell us about the vilest experiences of this illness but temper it with practical ways of getting through it and, eventually, overcoming it (which is a sharp contrast to many things I read and see, not that I blame people because it’s a horrific thing to go through). Plus you have a sense of humour about it, which is wonderful! I’ve had these for 5 months now more or less, just after I handed in my doctorate. I wasn’t as severe as you but it got to the point where every time I sat up I felt faint, which was vile. I’m on amitriptyline and have been doing physio for it daily (I was really lucky and had an inner ear imbalance as well at the start of all this!), plus some of the exercises you recommend, and I think it’s helping. My vision is still a bit weird (esp in Tesco’s!) and I get bad dry eye (which apparently can go with migraine), but I’m hoping that I’m starting to make some sort of a recovery. Part of me holding out with this is due to your videos. Honestly I think there should be a published edited volume of people who suffer with this illness so that the world can see how bad it is - and you should be first in line to contribute! Thank you so much! And stay safe!

[@vestibularmigrainesupport]

I only just saw this as it was marked as spam by KZbin! Thank you so much for your kind words and I hope you are recovering OK x x x

[@vestibularvlog4066]

So relate, and walking has massively helped me. I’m 18 months into this and I’ve not had any support and failed to get any support from benefits wise and I’ve not been able to work for 10 months now. No idea when I’ll be well enough to be back again. But like you I’m grateful I have a roof over my head. Your video gives me hope as you’ve made such good progress with it!

[@vestibularmigrainesupport]

Ahhhhh thanks hun x x x

[@tracy9397]

Thank you for the upload. You give me some hope. I have all the same exact symptoms but my left ear is also plugged on top of everything else and I feel like I don't want to live anymore because this isn't living to me.

[@anjhul]

Don't loose your hope .

[@alexanderblake1645]

Amen to this video! Had this for 4 years now! First episode was 4 years ago but recently had another attack and dizziness has come back mega worse! All the symptoms you were explaining at the beginning of your video have been with me for a week now! Ive lost my jobs due to this, I have a mortgage and I'm fucked pretty much! Just hoping it passes soon and I can get my life back on track! Currently on topiramate 50mg a day and forcing myself to go out and walk a few miles a day, I get a few odd stares as it looks like I've drunk about 19 pints of beer when I'm out walking because of balance problems! great update, such a weird condition and it's nice to know others have similar symptoms! :) thank you p.s I'm about to go for an interview to be a Teaching assistant at a special school how are the school with you and your VM? I'm kinda hoping I'm ok to interview and they will understand or I may just hide it! I need the money

[@vestibularmigrainesupport]

No worries hun, our FB support group is vestibular migraine support

[@vestibularmigrainesupport]

I just gave up a full time position to go to 3 days a week as it can be intense but then again I was a carer AND a TA

[@delphipearl5780]

That sucks you lost your jobs - I would have thought employers would have been more understanding 😔 if it’s a comfort to you our consultant, who specialises in the bad boys, said the vast majority of people DO recover from these, it’s just a matter of when (and when is the big question here, I know). Take care - I find baths and walking help a lot

[@braininjurydiy]

Man, I got all this after a concussion, 5 years now, bizarre it can just come on on it's own, I never knew. I'm like you were, fatigue, dizziness, but also the noise and light sensitivty will trigger migraines. Cannot handle noise anymore, my legs go to jelly. I was a teacher hurt by a student. I tried to keep teaching and just couldn't, I've been unable to work for 5 years. Neurologists were no help just wanted me on meds that made me worse. I did a little rehab that i sourced myself and it's helped a little but I'm still not functional, I just exist round my house.

[@natalieeis9284]

I can relate. 2 years and I am finally slowly improving. Didn't want to live like that anymore. I can see light at the end of the tunnel. I hope the only way is up..❤

[@joycelynramotar7837]

Hope I can feel like you one day, going through hell right now

[@katelynjames9486]

Hi there! Thank YOU so much for sharing your story. It's so inspiring to hear about your improvement and how you got your life back. Your symptoms sound soooooo much like mine. I have Mal de Debarquement Syndrome, which was triggered for me after being on a cruise. I'ved had it for 9 months now, and completely relate to your situation. I have also found that walking has been so helpful! I would love to hear more about your vestibular exercises that you found helpful.

[@vestibularmigrainesupport]

Hi hun, if you visit my channel I actually made a video on vestibular exercises to do lol x

[@alexmurphy5289]

I have vestibular migraines and MDDS, try nortriptyline it really helped me. I was on klonopin for years and although it helped, it had horrible side effects and is very addictive. You don’t necessarily have to do vestibular exercises, you can do plenty of exercises like running or anything that tests hand eye coordination. I am back playing ice hockey, yes, I have mdds and VM and play hockey quite well. Stay strong.

[@diannez2444]

All I can say is you are completely awesome 💕👍💕 thank you for all your videos. You have helped me so much , you’ll never know how much. I am happy you are doing so well. What a beautiful lady you are!!

[@vestibularmigrainesupport]

Ahhhhh thanks so much!!! x x x x

[@kimevans790]

It is so wonderful to hear success stories! Curious, how did your mom do with her VM?

[@jennissw]

How long did you walk for. I have to hang on to someone. You have given me a bit of hope. I'm 73 and some days can barley function.

[@vestibularmigrainesupport]

I had to hang on to someone too for at least 6 weeks, then I built up from 5 mins a day to 20 mins over 2 years. My mum is 75 and has this too, she lives in Benidrom and is always out watching live bands etc lol

[@paulfoster3316]

wow i totally agree about walking! exercise helps sooooo much and is super important. VRT helped ease it some what and certainly took the edge off.. still suffer from daily dizziness etc... never took any med that helped.. i too have two jobs and i feel like i have to do it..respect.

[@kmondragon08]

I suffer from vestibular migraines and I am still on medication and it seems that being in a dark room I lose balance

[@alexmurphy5289]

You now rely on your vision more for your balance since your equilibrium is off. It can be improved through exercise

[@sherriquest414]

@@alexmurphy5289what kind of exercise?

[@lyndseymilligan1612]

Thank you for the update!!

[@MrErick1160]

Mine is super bizarre I have this MdDS type vestibular disorder. I’m at the point I’m still 70% of the time in bed or on the sofa… the worse symptom is head pressure and feeling my brain slipping or moving and bumping around my skull I cannot grasp the reason why I feel that… I’m super fucking angry at the medical system because they don’t give a shit about us at all…

[@amandar614]

How are you feeling now? I'm dealing with the same thing. Was diagnosed with pppd...but I believe it is mdds. It's so hard and frustrating...

[@ScienceInMedicine]

Not true. Neurologist here. Medicine is very complicated.

[@8QQ8]

Was your dizziness 24/7? Rocking / dropping / floating sensation? Or room spinning ?

[@vestibularmigrainesupport]

Yep! 24/7 dizziness and movement for 2 years plus, also I had mini vertigo spins like half spins and felt the ground was dropping beneath my feet.

[@8QQ8]

@Viking , oh no! I can’t live with this for years..!😟 did you feel it even when you lay down? It’s like im on a boat rocking, and floating. And yes i had the dropping sensation too...

[@TartanCatholic]

I’m just starting this journey, horribly depressed. I’m hoping to improve soon.

[@sonagermchy]

You are amazing 💕 thank u so much for sharing this.

[@vestibularmigrainesupport]

You are so welcome x

[@danielmoore411]

Thanks so much. Walking helps me too. What about dietary issues?

[@vestibularmigrainesupport]

It made no difference to be honest

[@meganhenry5795]

Did you ever get crazy head/neck pressure, particularly with storm fronts? VT therapy makes me so much worse at first. It's borderline unbearable.

[@vestibularmigrainesupport]

Yes! I have neck pain now

[@meganhenry5795]

@@vestibularmigrainesupport in the back of your neck. Wow, mine most intense on the back and left side. I wake up in the morning in such pain sometimes. But once I get moving and stretch, it helps quite a bit.

[@Avinash37952]

Are you recovered from VM ?

[@sherriquest414]

Did you feel floor was uneven and bodying while walking, like on an ocean?

[@vestibularmigrainesupport]

All the time!

[@sherriquest414]

@@vestibularmigrainesupport have you ever fallen? How do you deal with constant floor bouncing?

[@vestibularmigrainesupport]

Never fallen! I dealt with it by walking a lot, not letting it stop me@@sherriquest414

[@sherriquest414]

@@vestibularmigrainesupport does it bother you??

[@micheledenny1]

What medications did you try that did not work?

[@MrWeinfook]

wait stem cells? can you find it for me ? is that a supplement? i got vestibular migraine too miss...my anxiety and nausea and diziness flare up attack hit me of nowhere.

[@jessicaamber6623]

How are you today?

[@maxsl2678]

Migraine diet?

[@vestibularmigrainesupport]

No I am not on any special type of diet

[@castrok5]

Are you on any special diet ?

[@vestibularmigrainesupport]

None hun! Diet made no difference to me at all. I drink and still eat junk food!!!

[@betsygundry3384]

for me most of my triggers are diet related.

[@ДиманаЙорданова-и6н]

Did you have depersonalization?

[@vestibularmigrainesupport]

Not anymore after 8 years of this, the first 2 years were the worst

[@kerrycoogan2337]

Hi! Are you fully recovered now and back to normal? I was diagnosed just over a year ago and I’m still having symptoms 24/7. I’m on pizotifen which has helped slightly but hasn’t took away all my symptoms completely

[@vestibularmigrainesupport]

You will never be fully recovered as such as it is a disease but yes I am functioning very well and just did a 26-mile hike in 3 days and traveled to 3 countries to rollerskate! x