How do other users find Topiramate? - National Migraine...

National Migraine Centre

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How do other users find Topiramate?

stewtheman profile image
3 Replies

Hello I am new to this forum/site!

I have been a migraine sufferer (classic with aura) on and off for twenty years and my most recent cycle of attacks realy picked up since starting an Atkins-type carbohydrate limiting diet last year.

So to cut a long story short, I was getting several attacks a week and had a plethora of tests (bloods for diabetes/thyroidism, eye tests, CT scan) which all came back clear or inconclusive. So my GP started me off with Propranalol as a prophalactic: what a mistake that was! Actually made my attacks worse to the point of having them daily!

So then in May we started Topiramate (25mg nocte) and this has worked wonders, in nearly six months I have only gradually had to titrate upwards to 100mg daily. Nowadays I get on average one attack every month to six weeks. My side effects consist of muddly thoughts/concentration, tingling in fingertips/hands (almost mimicking a migraine attack!) and one time where I drank alcohol and nearly lost the plot completely: spaced out, paranoid, confused...not me at all!

So with that long winded question, I just wanted to introduce myself and get a feel for how others are finding being on this drug. I don't plan to go too much higher than 100mg, dependant on my attacks, as I know this drug has a scary range of side effects. Having said that it certainly seems to have worked so far.

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3 Replies
Lupylass profile image
Lupylass

Hi there.

I've been on this drug for about a year, and on 50mg twice daily since January. I get a migraine about once a week but I can cope with that, and aspirin at onset of the aura usually nips it in the bud.

I find alcohol makes me drowsy. I don't seem to have any side effects now, but in the early days I did get a lot of tingling in my fingers.

I have found this drug to be a great success for me, having had migraines every 3 days previously.

stewtheman profile image
stewtheman

Hello and thanks for that!

I am glad that there is another success story out there, as Topiramate comes with a bit of a reputation doesn't it? Did your GP tell you how long they wanted you to be on it for?

I was reading some research the other day and, according to most neurologists, 100mg is the optimal maintenance dosage level for patients on Topamax so I will see what bearing it has on mine. I came off a night shift the other day and that must have REALLY thrown me as I had two attacks in two days, prompting me to do the jump from 75mg up to 100mg.

I was interested to note that your side effects are non-existent, that can only be a good thing right?

Bacaloca profile image
Bacaloca

I am on Topiramate I take 100mgs on a morning and the same on an evening. I have maybe 1 migraine a month 2 if I am very unlucky, before I was having 4 a week some running straight from one to another. I have had no side effects with the tablets and hopefully the tablets will continue to work. I have been on them about 10 months my GP and I are going to try reducing them after 12 months.

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