vestibular migraine nightmare

[dobbo1234]

Hi everyone. I just at my wits end and wondered if anyone can help?’!

Diagnosed with vestibular migraine 10 years ago by default as they did every test imaginable both ENT and Neurological and decided it had to be that and gave me propranolol and the following day it was a miracle. Hadn’t left house for months other than hospital appts but gave me my life back. Had some minor episodes but nothing like before.

Fast forward 8 years and 50 yrs old, given HRT as said it’ll be fine won’t cause you a problem and bam. Couldn’t stand up for days, crawling to the bathroom. It’s as if the beta blockers just stopped working.

I’ve now spent the last 14 months with neurologist testing this and that drug wise, had MRI and showed sinus problem so had a sinus operation (secretly hoped that would help but made things worse) and now on cocktail of Pizotifen, Amitryptiline and Candesartan and using Triptans still not good enough results considering side effects. Diagnosed with type 2 diabetes along the way too as put on so much weight from beta blockers and scared to walk/move too much, somehow managed to lose 3 stone by extreme diet and then they put me on Pizotifen which are known to be horrific for hunger and weight gain. Neurologist did tell me if Pizotifen aren’t really working then GP could prescribe new injections but GP said no has to be by a hospital - wouldn’t he have known that?!?! Lucky enough to have BUPA through husbands job but feel he is fobbing me off and BUPA won’t approve any injections anyway so back to neurologist next week to ask what do I do. Also seen a lovely neurological physio but not really sure it helps.

So sorry for long post but what injections are the ones people have had success with for vestibular migraine??? Just so fed up with it all as makes uou scared to do anything. Thank you in advance!

[Xandi2]

Hi, I think you'd get lots more replies from a Facebook Group with lots of people who have vestibular migraine. I'm part of 3. They're called:

'Vertigo/vestibular Battling Chronic Dizziness Together'

'Vestibular Disorders Support Group UK' and

'Vestibular Disorders Support Group '

There's thousands of people within these groups who have vestibular migraine who all discuss various treatments and what's working and the anti CGRP drugs you want to try. You could join and pose you question to them.

Good luck and sorry you're going through what you're going through it sounds horrible. I had a quick search and some people have had a bit of luck with the anti CGRP drugs - also Botox for migraine (it's placed all over the scalp and a bit in the forehead and neck) can help with vestibular migraine too if you wanted to try that too x

[dobbo1234 in reply to Xandi2]

Thank you so much for that info as I never thought about that Avenue! Really appreciate your reply 🙏

[Xandi2 in reply to dobbo1234]

No worries and good luck.