Migraine associated vertigo(nonstop dizziness)

[10beast]

Been suffering from chronic dizziness nonstop due to migraine associated vertigo for 2 years. I’m completely bedridden due to the severity of the dizziness, unable to move my head from my one flat pillow, or move my head at all. Dizziness is always higher ,never goes down to baseline. I’ve tried many medications and supplements with no avail. I have sound, light, smell, cannot open eyes at all. Nerve pains and stabbing sensations everywhere in my body . I have read many posts and have never seen someone with these symptoms having vestibular migraine.

Any one out there to give me hope with a treatment that helps constant dizziness that always increases in intensity and never goes down to base for me to be able to do VRT and habituate my brain.

Thank you so much for reading my post.

[Loulou1922]

Hi there, I too suffer with chronic migraine related vertigo and I must say that reading your post has touched my heart, actually made me cry. I’m so sorry that you are suffering so much and I really hope you receive some replies with some information that may be of use to help you recover or at least, improve your symptoms. (If you do, give me a shout as I’d love to know also!)

Lots of luck and prayers for you....

[10beast in reply to Loulou1922]

I feel like I’m the only one that has this severe issue with dizziness.

[Loulou1922 in reply to 10beast]

There are lots of us miserable peeps, you’re not alone in this 🙋‍♀️ 😬 x

[lesbud1]

have you had your vitamin b12 blood levels taken? I would start there.

[10beast in reply to lesbud1]

All my blood levels are normal B12, B6 Vit D

It’s my nonstop dizziness that’s been keeping me in bed full time.

[Didi56962]

I have vertigo for over 20 years, take an antihistamine called "Meclezine" available over the counter (25mg) Daily use took care of that. When the migranes set in I walked like a drunk. Accidentally discovered "taurin. I take 2000mg a day, every day. Migranes and vertigo no problem. Just occasionally very light headache. Try greek yoghurt or energy drinks containing taurin. See if that lessens your symptombs. If it does help a little (don't expect to be trouble free) than get on a daily dose of taurin. You got to figure out the dose. It can not be overdosed accidentally, but too much will make you drousy. I started with 4000mg and went down to 2000. Just right for me. Also used the cefaly headband for about 5 month. I am cured. May this help, there is no one size fits all when it comes to migranes. My daughter got on iron pills and her migranes disappeared. I will pray for your healing.

Dee

[10beast in reply to Didi56962]

I tried taurine a few months back and it made me more dizzy. As a matter of fact whatever medications or supplements I swallow they make me fizzier . It’s been an absolute nightmare.

Thank you for your prayers!

[Didi56962 in reply to 10beast]

You definitely need an antihistamine for the vertigo. Like I said, I take meclezine for some 20 years now. Along with taurin I am trouble free. That is if I don't skip

[Xandi123]

Hi, I suffer with migraine variant balance disorder. I had dizziness, Rocky, boat sensation to different scales. It was awful and my dr didn't have a clue. I did some research and paid privately to see a Neuro otologist. I see a Neuro otologist called Dr Surenthiran in the south of the UK. He's managed to make me pretty much 70% better from 2 years ago when it started. I take nortriptyline and pizotifen. However the nort initially was great but I needed to increase the dose to 85mg and this made my eyes really dry. So he told me to reduce and use pizotifen which is working. There's also a help website set up by fellow sufferers called. mvertigo.org/ I stumbled across tgis a few months ago. It's great because everyone discusses their different meds and what's helped. I would suggest you become a member. Good luck. People have got better. There is hope.

[10beast in reply to Xandi123]

Thank you for your input. I’m a member already and I’ve never seen anyone who has the dizziness severity that I’ve been suffering for two years which is not episodic but is nonstop.I’ve consulted with Dr Surenthiran by phone since I’m in US. he could not help me due to my inability to tolerate any medications . I’ve tried 21 migraine protocol preventatives and 19 supplements to no avail.

I’m gLad you’ve found a combination of meds to help you recover . I wish you complete recovery!

[Shellifer80]

Hello I am so sorry to hear how awful your vm is. I have had success with:

Lamotrigine 100mg

Duloxetine 60mg

Not eating any pulses at all

And I had surgery.

The surgery was my turning point. I had migraine surgery with Dr Meulberger in Berlin on Nov 18th 2019. I had it for pain but it reduced my vm by about 90% with all the associated symptoms of vm. It's also helped a lot with the pain. Over all I'm about 70-80% better and he said I wont see complete results until 6 months post op.

Surgery isn't for everyone but I thought I might as well share my experience.

I really hope you find your answer x

[10beast in reply to Shellifer80]

Thank you for your response. I don’t get pounding headaches but my dizziness keeps me in bed . What kind of surgery for migraine did you have If you don’t mind me asking?

[Gary336]

Have you been tested for other causes of dizziness, such as balance-system or inner-ear disorders? I have a lot of problems with dizziness which I thought of exclusively related to my migraines. However, it seems that I may also have Menieres Disease. I take prochlorperazine for the sickness, but the dizziness puts me to bed very often.

I hope you find a way forward soon.

[10beast in reply to Gary336]

I don’t have Ménière’s disease .i have severe auras ,get electric shocks go through my body , severe burning and pressure in my head , unable to tolerate computer and cell phone waves ,noise ,light, any small irritant of perfume all cause my auras to give me more dizziness .

Thank you for your well wishes.

I wish you a full recovery!

[Dorika92]

Hi! Is your dizziness rocking? Or feeling like you are on a boat? Or is it spinning? And is it 24/7? do you feel it when you’re laying down?

Im asking because my neurologist thinks what I have is Vestibular Migraine as I constanlty feel this “dizziness” inside my head. Never spinning though. It’s the worst when I don’t move at all and laying in bed. I have this sensation of dropping and like I’m on a boat... It’s not the first time I have these symptoms. The first “session” I had was back in 2015. Lasted for months. Then it went away on its own, but came back every year almost. In 2018 I had it for like half year. But never this severe like now. Now I’m 3 month in. It’s the worst. Never felt this intense rocking/dropping sensation while laying down. And I have many other symptoms too. My doctor gave me Sibelium (funarizin I think it called, but here in Europe it’s under the name Sibelium) but I was too scared to take them as I read on many forums that this pill make you gain weight... I can’t take beta blockers because my blood pressure is normally very low. I just hope it will go away just like it always did... But I’m not sure how long I can tolerate this hell anymore.. I’m giving up..

[Loulou1922 in reply to Dorika92]

Please don’t give up Dorika, you’re not alone in this, I know it’s awful! Ps (Don’t worry about weight gain, I’ve been on Pizotifen for years and it’s the worst drug for weight gain, I’m prone to putting on weight and it’s not made me gain any!)

[Dorika92 in reply to Loulou1922]

I’m trying but I can not live with this for much longer... I will try this pill and I hope it’s going to help me. If not I don’t know what I’m gonna do. This is literally hell. The strangest thing ever. I don’t even know if its 100% Vestibular Migraine or not... but my doctor said it could be. And I read so many forums , watched so many videos and my symptoms and the type of dizziness I feel is similar to VM or PPPD. So probably its one or the other. Never had a headache in my life!!! so very strange and I’m trying to understand what can going on inside my brain...

is that pill you’re taking gave you any relief ? Please tell me you feel better! I need to know if there is a way out of this...

And Thank You for the support! 😘 <3

[Loulou1922 in reply to Dorika92]

I’m so sorry to hear that, it’s quite depressing at times and I know how hopeless and even angry it can make you feel. Whilst pizotifen doesn’t help my migraine attacks, my vertigo is so so much worse when I’ve tried stopping the pizotifen in the past so it’s helping my vertigo a little, and a little is a lot, as you know, so I’m not cl coming off it lol! I have been researching too for yrs and I’ve come across quite a few ppl who have had massive relief from this illness with medications and combination medications so NEVER LOSE HOPE.

I think the trouble with this illness is that it makes you feel so vulnerable that a lot of us refrain from trying new medications for fear of making us worse (me included) Don’t read things online about side effects! From my experience they often are very rare. Have you heard of dr surenthiran? I’ve heard he’s helped a lot of ppl and understands this condition as well as ear related vertigo.

My symptoms are def triggered and worsened by vision rather than movement. Eg computer screens, reading, moving in the car and seeing objects move past me when travelling, ppl’s moving faces when communicating etc. I think ear vertigo is worsened with any movement, your own head movement etc or sitting still and feeling like you are falling or moving. I do get that too but not every min of the day like I do the other symptoms. I also feel ‘drunk’ and disconnected and confused, also blurred vision with nystagmus with my migraine vertigo. Not sure if that helps you? I’m not a doctor but just my experience 🤷‍♀️ (just typing this makes me feel sick! 🤢) I always tell myself that I will get better and to keep fighting, never give up hope! And remember this - THOSE WHO DO RECOVER ARE NOT USUALLY ON FORUMS WITH US AS THEY’RE TOO BUSY OFF ENJOYING THEIR LIVES AGAIN 😉😬

I really wish you all the luck in the world and pray that you find your cure too (let me know if you do, so I can have some of what you’re having) xx

[Dorika92 in reply to Loulou1922]

My dizziness is never vertigo (spinning) but a constant rocking sensation in my head. Especially when I lay in bed. Then it’s sooo bad. Feels like I’m on a boat or if the spinning is INSIDE my head... and also every 10-20sec I have a sensation like Im falling/dropping. No visual snow no blurry vision... but i did have derealization and depersonalization, but i think that was more from the anxiety than from the migraine itself. I’m not sensitive to lights or noises I think. Or maybe not that much that I don’t find it bothering me. im fine in cars too. Its just this constant “movement” floaty dizziness in my head that’s killing me.

I do have brain fog and I’m definitely not myself.

I just really hope it will go away eventually. It always did.

I will definitely let you know if this Sibelium pill helps or not...

hope we will feel better. And recover for good. Xoxo💗

[Loulou1922 in reply to Dorika92]

my mum has suffered a few attacks of vertigo from her ears in the past and your symptoms sound similar but that could be a coincidence, I’m not a medical professional. I get those symptoms when I forget a dose of pizotifen or on bad days. It’s really scary and the spinning makes me nervous. Flunarazine? I didn’t realise they’d given you that to try! It’s supposed to be one of the wonder drugs for vertigo, actually one person I’ve seen in the past has 90% recovery on that! Aw will you let me know how you get on with it?

[Dorika92 in reply to Loulou1922]

Strange because I never ever had any ear infection... actually I hardly get sick ! But my ENT said if its my inner ear I should get spinning dizziness and not this strange one, and not especially for 24/7 all the time. So she said its 99% not my ears...

flunarizine is also a good migraine prevention and yes its good for all kind of vestibular symptoms/problems. Let’s hope it will fix me! ☺️

[Loulou1922 in reply to Dorika92]

I hope so, even some relief is a positive thing xx

[Kathybishop]

I’m a migrainer and last week got viral labyrinthitis vertigo nausea spinning vomiting Never felt so ill. I was put on prochlorperazine for the nausea which helped but made me drowsy. However I’m a person who feels that medication should be for short use only so I came off after three days. I’m finally better after one week! Can u try and go cold turkey and see what happens or are u too scared?

[Lasercoug]

I was diagnosed with Migraine Associated Vertigo but I'm pretty sure my doctor just finally gave up when she couldn't get to the root cause. I'm more and more convinced that mine is due to my Eustachian tube not working correctly. My 3 main episodes of vertigo have all been connected to either allergy season or colds. Unfortunately, once they start, they last for months at a time. I'm barely functional during that time. I've found some coping mechanisms but nothing seems to work permanently. In two weeks, I'm getting a Eustachian Tube Dilation and hoping and praying that it fixes my issues. The common thread that I've seen is that ENTs just don't understand all the causes of vertigo and dizziness.

[Twisler69]

Hi I have been bedbound 5 weeks as I was told I have vesbiler migraines by ent and started noratripline 10 mg I noticed my severe spinning and fainting rocking sickness was better for two weeks then it hit me again it is absolutely terrifying iv been like this 5months now and had my head scan cancelled because of coronavirus so I'm still in the dark what's exactly wrong with me but I no my anxiety and panics are terrifying and I try to stay positive but it makes you feel you have no life I have had great support of this forum I am dizzy daily or I spin go faint ringing in my ears and pains in my body as I feel week I feel for you because I'm going through the same I try to get up but then when I spin or faint I'm back in bed and scared to go downstairs incase it happens again I just want help

[VeronicaLodge]

What a horrible condition. My husband had sudden onset dizziness, headache, nausea, Vertigo and was unable to open his eyes or get out of bed. Yesterday he was prescribed "Serc" (Betahistine Dihydrochloride) and there was a huge improvement today. You have probably already tried that medication but I did not see it mentioned in other replies. Best wishes, I hope you find treatment that gives you back your life.

[10beast]

Thank you everyone for your responses . I appreciate all your inputs. Unfortunately I have tried all medications and supplements and each one has caused me more dizziness . I continue to be bedridden , and doctors don’t know how to help me any further. And of course this pandemic is not helping . Stay safe !