Do you have experience of the side effects of topiramate (topamax)?

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I've been on 50mg of topiramate twice a day for a couple of years now. Initially this seemed to reduce the number of migraines but now I'm back to having migraines almost on a daily basis. I can take Rizact 4 times a week which works well because this usually stops the migraine in its tracks which means I can have 4 days migraine-free and then, if I'm unlucky have 3 days of migraine to deal with; if I'm lucky, I might not have a migraine on the other 3 days.

When a migraine does run its full course (because I've already had my 4 triptans -rizact -for the week) they are slightly more manageable than they used to be before I started taking the topamax. In other words I no longer consider suicide during an attack.

The problem is that the topamax has made me into a complete zombie. i am unable to concentrate. I forget words and tasks that were simple two years ago now seem difficult.

I am tempted to try to come off topamax because maybe the intensity of my migraines is less anyway and not due to the topamax because I am tired of being such a zombie but I am really frightened that it might actually make my migraines more frequent and more intense. I also read somewhere that you can gain a lot of weight too (which would be the icing on the cake!)

If you have experience of taking topiramate for migraines and coming off it, could you give me some advice?

Trudy

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  • Posted

    I was on this drug for about 4 years but it worked poorly for me i had all the side effects you had. I came off it over a 1 month period. I did not gain any weight from coming of it, my headache pain stayed much the same.

    To me its a horrible drug but works great for some. Have you tried any other preventives in the past?

    Steve

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  • Posted

    I've tried just about everything so this was a last resort. Have you had any luck with anything?

    Trudy

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  • Posted

    Hi Steve. Thanks for the link. I really hope you find some relief and will keep us all posted on how you get on.
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  • Posted

    Hi Trudy

    I too had horrible side effects with no reduction in the migraines - zombie sensation, difficulty concentrating (nearly drove off the road (which was the trigger to stop them), kidney stones, self harm thoughts and nose bleeds. Try ramping them back to see if the side effects reduce without reducing the benefit. I cold turkey'd, which was truly horrid for a few days but soon settled, but then I'd only been on quarter dose for 1 month.

    sounds to me like your benefits are not worth the side effects. have you tried gabapentin or pregabalin - in the same class of meds - again zombie side effects so no use to me. If I am unable to drive living as I do in the middle of nowhere its no better than the 4 days a week migraines I get.

    Have to say my current triple whammy: (1) Botox (2) Riboflavin/CoQ10/Magnesium and (3) HRT are starting to damp them down. Had a score of "2" out of 10 for the last 8 days on my Diary, which is is longest run of mild troubling headaches since the last botox jabs. Botox on its own gives me 1 month at "2" every 12 week cycle...

    best wishes

    helenxx

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  • Posted

    Helen did you pay for your botox privately?

    Thanks

    Steve

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  • Posted

    I forgot to say i take 50mg amitriptyline and 400mg vitamin b2 it brought my pain level down from a 9 to a 5.

    I would recommend the vitamin b2 but takes a while to work. I once stopped vitamin b2 and my pain level shot back up again so it does help. Helen has listed the 3 most common supplements that have a proven record for some with migraine.

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  • Posted

    Hi Steve

    Yes, I went privately for botox, my medical insurance paid for 2 courses of treatment but I paid for the third myself - just over £600. It needs to be much more effective before I pay out again. Did you get yours on NHS? At present I cannot see enough benefit to make the case...

    I'm taking 400mg B2, 200mg CoQ10 and 600mg Magniesium - found a "new" type Magnesium L-Threonate supposed to cross the blood brain barrier better but £££ so I'm adding 167mg tablet into the other chelated magnesium.

    My GP prescribed the B2 but I haven't been able to collect, some manufacturing problem with the time release. Any luck your side with NHS funded B2? I'm on a pre-pay so any prescription is worthwhile for me.

    Helen

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  • Posted

    Hi Helen

    I paid private myself for the botox. I just buy my vitamin b2 from amazon. I think botox is available now on the NHS if you have headache more than 15 days a month. I did try magnesium water which was expensive but did not help I tried many other forms as well without much success.

    Stephen

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  • Posted

    Thanks for the feedback. I take magnesium anyway, it has kept my asthma under control for 35+ years and my bone density is good too, so upping from 250mg to 600 was no hardship but you have to be careful with kidney function and high doses. At least B2 just makes your pee neon coloured!

    Helen xx

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