Hi there
I’m a long term migraine and vertigo sufferer, but have only just had it properly diagnosed as vestibular migraine, after 30 years. I am currently a chronic migraineur with basilar and aura migraines. I’ve posted on here on and off since 2007.
I had an acute vertigo attack at the end of last summer, the worst since the very first one I had. Since then I’ve gone back into a chronic migraine state. It is taking a long time to recover, the longest ever, 7 months so far (usually it would be a few weeks) and I’m still experiencing bouts of rotational and dysequilibrium, but I do have more good days now so compensation is taking place. I am able to walk out more often now which is a huge improvement. The migraines however have not really improved since they started 3 weeks after the attack, so I feel quite ill for much of the time. I saw a neuro-otologist last week for the first time and had a set of ENG etc tests done, some I couldn’t do as I am so motion intolerant but I managed 90% of them. This is where vestibular migraine was confirmed, along with possible BPPV. The tests were normal apart from one hearing test with a slight drop at a particular tone in both ears at 40, this I was told was nothing to be worried about, but they were curious about how this had developed or been caused. I am going onto a migraine preventative and then go back in three months time for a review.
I was relieved to get the diagnosis (though it wasn’t as surprise as I’d worked that out some years ago, but needed it confirmed), but now I’ve come down from that high I am feeling quite low. She told me not to drive until I go back for the review (I very rarely drive, but it’s a bit of a lifeline when I feel well enough to, and I never go far). Drinking is out, along with all the other migraine diet changes I made months ago and my life feels torn apart by it all. I’ve also lost my job and income due to MAV. It’s been difficult not to become isolated, and I do try and get out on most days, but now I feel really trapped (I live in a rural village) knowing that I can’t drive on the odd occasion. I think I feel as trapped by the illness as I do by the practicalities of getting around with it right now. Everything is now relying on the preventatives to stabilise my condition.
How do others cope with this lack of mobility and isolation? I’m on my own a lot and have no practical support 3-4 days a week, I’m not always able to do things like cook on my bad migraine days.I wasn’t feeling depressed, but my mood has really dropped over the past couple of days at the realisation of it all. It’s hard to know how I will manage.
Any tips gladly received!
Has anyone been referred for counselling with their MAV? Did it help?