I have suffered from migraine for 40 years and severe ME for 30 years. I am eligible for a trial of rimegepant as a prophylactic medicine and wonder if anyone else has tried it. Also has anyone tried botulinum toxin?
I tried botox by a doctor with a very good track record of success for it and it had zero effect. Apparently it doesn't work for some people the first time and effects only show up on the second set of injections, which should be about three months later, but I wasn't able to get those. I tried botox for my migraines because it was rated 8/10 in Dr Alexander Mauskop's optimistically titled book, 'The End of Migraines'. He was one of the first neurologists to use it for migraines, and thinks it's underutilised. You can read about it on his clinic's website here. FWIW, he rates rimegepant at 7/10 in his book. The edition I have is dated 2021, so I don't know if there's recent evidence on either of these treatments that would affect his ratings.
I have never tried botulinum toxin but I've always thought it sounded terrifying. Would it be used to inject migraine sufferers in the head? I've only seen it used (on TV) for two different problems - smoothing out wrinkles on the face and how it can cause the face to become expressionless until it wears off, and secondly it is used to inject young children who become phobic about defecating so they hold it in all the time.
You might like to read the link to Dr Mauskop's work in my above post and I think it will set your mind at rest! You get injections in the scalp, mainly, loads of them. I barely felt a thing (very fine needle) and it was over very quickly. Because it's not your face getting injected (apart from your forehead a bit, IIRC), you don't end up expressionless.
I had my second round of botox for chronic migraine last month (given at 3 month intervals). I had to fail 3x oral preventatives and have >15 migraine days a month to qualify for it on NHS. It's not prescribed for episodic migraine and I'm unsure how effective it would be for that. I suffered with episodic migraine for 30 years before the transformation to chronic, they're related but chronic feels like a different beast to me. I have seen a sustained reduction in migraine days from roughly 5 days per week before botox down to 2 days per week now. The second dose hasn't appeared to have reduced that frequency further, though I am noticing a further drop in migraine severity and can now fully kick a migraine the same day with triptans. I get the feeling that the injectable monoclonal antibody anti-CGRP treatments (Erenumab + others) are a more effective preventative than the oral gepants. I will be trialling the mAbs in due course but also plan to try rimegepant for acute as I find triptans pretty unpleasant to take. Yes - most follow the PREEMPT trial and administer ~30 injections across the hairline, brow, above the ears, back of head & shoulders. Quite different to cosmetic use, I find it hard to frown now and perhaps have a few less wrinkles on my forehead but no obvious visual difference.
