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Latest on Topiramate

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Well the news on Topiramate as migraine prophylaxis is not good thus far. I'm now in week ten. You have to ramp it up so I had two weeks on 25mg, two on 50mg, two on 75mg, and now I'm in my fourth week on 100mg.

Let's start with the side effects. I was warned that "some tingling in your fingertips and toes" was common. That turned out to be my whole hands and all the way to my knees sometimes. Thankfully that does now seem to be wearing off, although I can still feel it in the background and I feel like it's making my fingers even clumsier than normal.

Headaches is another known side effect (yeah, I can't work that one out either, why give you a drug among whose known side effects is headache to help with migraines) and I've been having more headaches - not migraine headaches, which are over on one side, but centred.

The vaguely amusing positive one is that I'm been losing weight, another known side effect (I've not lost a lot, but I would have expected to be putting on weight at the moment as I'm eating lots of naughty food like cake and biscuits as I'm buying these for Beth as comfort food for her with her problems).

The quirky one, which isn't mentioned anywhere in the literature, but which I found mention of on web sites by users, is that it changes the way "soda" (i.e. carbonated drinks) taste. I only drink one of those, Pepsi Max, which I like ... or rather I did. Now I don't because it tastes funny. Oh well.

All of these I could live with (indeed the weight loss is great if it means I can live on a diet of cake!) but as I've already mentioned I've been getting more headaches and I've also been getting migraines still.

For example over the last eleven days (I started keeping a careful log at the start of week three on full dose) I've been headache or migraine free on precisely one day. So currently not only is it not working but I'm experiencing far more bad days than normal for this time of year and even in the middle of a winter mega-cluster this would be a bad patch.

I spoke to my GP by email about this a week or so ago. I said I wasn't rushing to conclusion and he said:

Yes we normally expect membrane stabilisers to take 4 weeks to produce maximal effect

Well, as of this coming Tuesday we'll be up to four weeks. I have to say that given what I've gone through over the last six months and in particular over the last few weeks I'm not holding my breath ...

Written 21/05/11

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