Migraine help, I'm desperate - botox or topiramate?

[doingmyheadinn]

Not quite sure why I'm posting, partly for advice, partly for sympathy! I've had migraines since I was a teenager, generally only for a day or two before my period, later in my 30s also mid-cycle/ovulation time. I'm 44 now and they've now spiralled out of control and what was only 1-2 days is now 7-10 days 2x per month and I'm just in agony. Many days I manage to grit my teeth and work through but it's really affecting my quality of life, ability to parent, ability to be a spouse. I do all of the right things (good sleep, no caffeine, no alcohol, no overmedication, etc.) so I am feeling quite desperate.

I'm under the care of a neurologist who started me on candesartan which worked for a bit but is now inadequate and I couldn't tolerate high doses. Same for amitryptilline. I've been put forward for Botox but that can't start for two months due to holiday schedules. I have been considering Topirimate in the meantime but neurologist says that should also have a good trial of at least 6 months before we decide whether it works. The CGRP inhibitors will not be offered until I've tried everything else. The neurologist said the pattern of headaches fits with peri-menopause but I am absolutely at the end of my rope and can't imagine living this way (or this getting worse??) for several more years.

Suppose I"m looking for a handhold and to know whether anyone else has been through this. Also any wisdom around taking topirimate versus botox? They are supposed to be about equally effective, but I am just hoping to get it right this time. (It's already been 8 months trying to get the candesartan doseage correct).

Thank you

My neurologist says it's a marmite drug. It did work well for me but I struggled a lot with the side effects

@doingmyheadinn Actually, only 200mg a day. To be honest I can’t say I’ve seen any difference personally, so perhaps I should increase the dosage. But I do think that it is worth taking regardless. It may well support other medication being more effective for all I know.

@doingmyheadinn Just to add - acupuncture has worked for me too - but if you can’t keep it up then you revert. I noticed that the acupuncturist could relieve even a bad migraine but the problem was the pain could come back about 4-6 hours after the session. On the other hand I have a friend who uses no medication at all because of acupuncture. So I firmly believe it can suspend an attack, and if you can establish a permanent routine may be able to alleviate or stop attacks. Really worth trying if you can find an acupuncturist. Some health insurances cover it in the US (don’t know where you are).

Sorry the candesartan has made you feel like that. (I felt like that on Amitriptaline - like I was falling asleep!) Luckily this hasn't done that. I'm on 16mg. A neurologist I contacted at the national migraine centre suggested trying 'Atogepant ' if it stopped working. I would recommend an appt with them, it takes months so register now!

A private neuro recommended acupunture, and he said if that doesn't work he'd give me botox. But he said try it first as its a similar effect.

Mine said this :

' The evidence-based dose is 600mg Magnesium Citrate for a
minimum of 3 months, but this high dose may be laxative so start with a lower dose and build up. There are various forms–Magnesium glycinate may be better absorbed and less laxative than some.
Magnesium oil spray and Epsom salt (Magnesium Sulphate) soaks can be used for topical absorption. Magnesium oil spray can be very helpful for neck muscle stiffness.

Propranolol has worked for me. Also had migraines since teen & spiraled in 40s since peri menopause! My triggers are alcohol, gluten & stress! Its awful & no one truly understands the pain. I take 3 tablets a day & they have massively reduced

If she doesn’t get side effects and it works for her I don’t think there’s any need to be worried -although make sure as she gets older she isn’t relying on the pill for contraception.

For me it was the worst of the preventer drugs I tried, I had burning pins and needles in my hands, feet and face, I was permanently confused and suffered from aphasia regularly, everything tasted like metal, and it made me anxious, It’s also the most likely cause for several miscarriages, and now carries a warning that it’s both teratogenic and impacts the effectiveness of contraceptive pill. Having said all that it did sort out my migraines.