Please can anyone tell me anything about their experience with vestibular migraines?

[PinkMendinilla]

I have been diagnosed with vestibular migraines for 5 months secondary to a viral infection (I suspect covid due to symptoms at the time).

Started with fast vertigo. Now daily awful headaches, dizziness and nausea. Patterns, lights, screens and movement make it worse.

I also have epilepsy.

I have tried propanalol, ibuprofen and paracetamol. No help. Also magnesium, riboflavin and co enzyme q10.

I don't drink (well very rarely now) or smoke and eat well. Gets worse around periods.

Trying acupuncture which gave me 2 days respite. Booked again. Even tried a daith piercing.

It took ages to get a diagnosis and any suggestions of help as I kept being bounced from GP to epilepsy nurse.

Neurologist has suggested amitriptyline and pitizofen or candesartan. I was prescribed triptans but it's the dizziness that's the worse and chest pain gives me anxiety so I avoided. Not sure I can manage amitriptyline as I really can't afford to be more out of it than I already am.

Any experiences please or suggestions? This is awful and has gone on so long. I'm on a tough course of study and would like to TTC soonish and am doubting whether I can cope with either for much longer.

I've not found medication that has worked for me.
But I didn't feel "out of it" with amitryptiline so it might be worth a try in case it works for you.

I have these and I have adjusted my lifestyle to avoid triggers where I can.

I always carry sunglasses, I avoid shops with harsh lighting, I do not do late nights or mess up my sleep pattern. I do not eat smoked foods. I take no hormonal contraception.

I found osteopathy and chiropractors helped a bit because I think muscle tension in the neck and shoulders doesn't help.

The two preventative medicines that helped me were venlafaxine and topirate ( which is actually an epilepsy drug I think). The topiramate had side effects of weightloss and pins and needles in hands and feet, it wasn't the easiest drug to take, also I think it might be contraindicated in pregancy.

The most effective pain relief for me is migralieve pink, I think buclizine is the magic ingredient for dizziness and the codeine helps for the pain.

I am 43, and don't get as many now. I was diagnosed by a neurologist when I was 24 and my twenties were the worst. Pregnancy seemed to reset my hormones a bit.

Thank you both very much, really appreciate your advice. Good to know amitriptyline may not be that heavy going. I shall ask again about migraleve. I wasn't advised to take it (I think by a GP or pharmacist) but if it really helps with the dizziness I might check why not.

I do note neck pain makes it worse

I really sympathise OP. Vestibular migraines are horrible. I have found that one of the only ways to control mine is through diet and exercise, I think because it levels out hormone fluctiations and blood sugar fluctuations, which I know are massive triggers for me. I went through a phase years ago of eating pretty much no refined carbs, cut out alcohol & caffeine, and getting regular exercise. I had to do it for a different reason, but realised that when I lived like this the migraines stopped too. It meant I had much greater tolereance to other triggers too (lack of sleep, hunger, flourescent lighting, supermarkets, etc..). I started drinking alcohol & coffee again in moderation, and seemed to tolerate them both better as well. All gone to pot now peri-menopausal & battered by long-covidy thing, but it made a dramatic difference to my quality of life for years and years, so if there's any room to make those kind of changes I'd really recommend it.

Also recommend antihistamines, especially if yours have been triggered by a viral infection. And if you do find that an antihistamine helps, it may be worth checking out how avoiding high histamine foods might help.

I get neck pain too as part of the symptoms, usually on one side - sometimes it can be tricky to figure out what are triggers and what are the early signs of a migraine starting.

I was put on amitryptyline. Ent consultant said there were 2 medication options to try 1st, one might affect my sleep, the other would make me sleep. As I hadn’t slept properly for 8 years I went with amitryptline. I did feel jet lagged for the first few wéeks. Started on 10mg then upped to 20mg. Dr said to take it before 7pm so it doesn’t make me too dozy in the morning. I need to go for a review, am so worried about getting the vestibular symptoms again (dizziness) I’ll prob stay on it. I think now the only side effect is it is harder to get up in the morning.

My vestibular migraines are caused by teeth grinding. Wearing a dental splint at night helps enormously.