Thank you I’m a stubborn case I think, I’m very medication sensitive as many migraineurs are. I’ve tried loads of meds and unfortunately they have either had intolerable side effects or they just did nothing.
I’ve seen a fair few medics over the last 2.5 years and frankly the GP’s have been sympathetic but most of them admit its out of their comfort zone. I was told VM is rare, from what I’ve read it more likely underdiagnosed.
Vestibular disorders tend to have very similar symptoms. So diagnosis can be long drawn out and tedious. And as you’ve experienced you see 3 different doctors and you are likely to get 3 different diagnosis.
It could be you aren’t on a high enough dose of Propranolol. I’ve seen members on 120mg upto 240mg before. I couldnt take it as I have asthma. I’m currently waiting to see the headache specialist at my local neurology dept, but am very seriously considering private as waiting lists are long.
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The only thing I have found that affords me relief is low dose Clonazepam, its a benzodiazepine so there can be addictive qualities. But I get 14 a month prescribed so can take one every other day if required. I’ve found it extremely good at getting rid of the off balance,spongy floor sensation.
Not ideal and I am sparing with using them but my Neuro prescribed them just to break the cycle of dizziness really. I’ve never exceeded 0.5mg at a time and can go for days or even weeks without one. They are a long acting Benzo so can last into the next day. They make me a bit drowsy so I take one at night.
But as an emergency med they are hard to beat in my opinion. Like Amytriptyline they act as a vestibular suppressant. The way I see it is that they are no worse than antidepressants and I have to be able to function. But some doctors will clutch their pearls if you suggest it.
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Little update from me. Surprisingly my GP has prescribed the Rimegepant.
She prescribed 4 tablets a month for acute treatment, which is fine for me as I tend to have between 2-4 migraines per month (if they are migraines! Maybe I should just call them flare-ups).
If she had refused, I would have had to to pay £114 for 4 tablets, so this NHS prescription
will save me over £1,200 a year.
Maybe it depends on which GP you see (which should never be the case). I’d never seen her before - you’re just assigned to whoever is available on the day. I’ve been highly critical of the aloof, inconsiderate and downright incompetent ones I’ve seen this year, but credit where it’s due, this one actually listened.
Of course it’s too soon to say if the Rimegepant is the answer to my 3 day migraines but at least now I don’t have to spend a fortune to find out.
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Eughh, it’s such a dilemma now.
The Rimegepant seems to help reduce the migraines down from 3 days to 1, but the residual lightheaded dizziness (non-spinning) is pretty much constant now.
They’ve confirmed I can’t have Amitriptyline or Venlafaxine because of a dangerous interaction with Lamotrigine, which I’ve taken for 5 years as a mood stabiliser.
I don’t know what medication I can take to improve or eradicate the residual dizziness. I’m pressing on with the VRT but I’ve been doing that for months.
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