I have suffered vestibular migraine for 7 years now but only correctly diagnosed since 2017. I used to have flare ups lasting 6 months, after which it would subside, until a year later when it would return. For the past 2 years now though it’s been constant and I cannot identify triggers. I have tried diet, riboflavin, getting good regular sleep, eating patterns etc etc with no success. I have tried Amitriptyline, Nortriptyline, Gabapentin and Topiramate, all of which only made my VM worse not better (i couldn’t tolerate the lowest start dose of any of them). After seeing a neuro-otologist and a neurologist, I now have an appointment with Dr Zermansky at the headache clinic at Salford royal in april, for the consideration of botox. I am at my wits end with this condition and simply cannot live like this (i am bedridden most days and can’t function - and yes, i’ve tried keeping active because it supposedly helps and being inactive supposedly makes things worse but it does not work that way for me).
Ever since vm began i have also had ectopic heartbeats which i know are due to the vm because it disrupts autonomic function. But i have read that migraines can increase the risk of heart attack, stroke and abnormal heart rhythm like AFib, so i am concerned that because i live with 24/7 migraine that hasn’t reacted to so many treatments so far, that i may develop a heart problem. I realise that most people who achieve some sort of success treating 24/7 vm never totally get rid of symptoms, so it worries me what could happen to us having to be in permanent migraines.
I am so fed up with this condition ruining my life. I’m 30 years old and have no other conditions yet this is robbing me of life. Everything i have tried has done nothing to help. I don’t even know why it’s 24/7 with no identifiable triggers. (i’ve had all sorts of tests, mri scans and been examined by multiple neurologists so i am absolutely certain it’s vm, my symptoms fit it perfectly. I just worry what other things might come about because of having this, and wonder if i will ever actually feel any better.
Has anyone successfully treated 24/7 VM with botox? Has anyone who had ectopic beats due to their vm managed to get rid of the palpitations too?