Topirimate for migraine

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I have been prescribed 75 mg for nearly 1 year and having read about the side effects of this medication I am keen to come off it, I still get migraines so id prefer to try a different medication but when i mention this to either the neuro or my gp both dont seem keen to even consider reducing the dose even though I complain about the side effects - weight loss, tingling in fingers / toes, cough, feeling cold all the time, at the time I was prescribed it I was only told I could expect possible kidney stones. have others had difficulty getting doctors to agree to reduce the dose to get them off it ?   

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  • Posted

    Can't understand doctors anymore. We know our bodies and when something isn't normal it scares us.. If a med is causing side affects why not try something different.. I take propanolol and it works great for my bp and headaches.. Good luck I hope they listen to you ❌❌❌
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  • Posted

    Hi Julie

    After suffering the same side effects as yourself I am gradually weaning myself off these tablets I'm down from 75mg to 25 and by next week hopefully will be off them all together but I have done this myself not actually going to see my GP till later this week so will find out then what he says, but sometimes you just have to make the decision yourself. I was on amitriptyline and propranolol for many years and they worked for me until just last year which is why they tried topics ate but have never felt right on it.

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  • Posted

    My neuo had no second thoughts taking me off them, I had to go cold turkey because my symptoms were so worrying.  I had all of your symptoms and more, if you start with a sore throat, STOP taking them immediately.  He suspected I had Stephen Johnson syndrome, which is fatal.  You should insist you come off them and insist he gives you something else.  I tried amitriptyline and propanolol before the topirimate and neither of them worked, at the moment I am not taking anything because of my worries from topirimate.

    I don't know what to do for the best.

    Good luck

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  • Posted

    Thanks for your replies, im wary of stopping it myself due to the risk of seizures which ive read can happen if you stop suddenly. I think my gp is reluctant because they aren't the ones who first prescribed the drug , when they initially rang to see how i was coping with it they did say it was a powerful drug ! I just wasnt expecting to be on it this long, the side effects arent good although i think gp's wont always confirm its a side effect.
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  • Posted

    I am now reducing my dose of Topiramate and should be off it completely next week, already I have noticed a difference in how I am feeling, the side effects of tingling in the fingers / toes have stopped, the constant dry mouth has gone, I had developed an annoying cough that has gone. the weightloss has been quite dramatic though so I am being monitered by my GP. I was offered an alternative medicine by the neurologist with a similar list of side effects but have refused as I have decided to deal with the migraine attack as it happens rather than keep taking powerful medication everyday.  
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  • Posted

    Hi Julie

    I've been off topiramate for a a while now and my side effects have also gone but still having lots of migraines about 4-5 a week so my doctor still trying different medication but so far no joy and getting quite down about it. I'm also waiting to see a neurologist.

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  • Posted

    I've been on Topamax (topiramate) 100mg/day for about 7 months now, and I'm in the same boat. I've noticed the side effects, but it has yet to have any noticable impact on what's been diagnosed as a migraine that I've been experiencing for 9 solid months. I've had the same wonderful side effects you've described, in addition I've noticed it makes me feel "fuzzy" and disconnected, it seems so much harder to keep my thoughts straight since getting up to the full dose.  The most worrisome though, is that my vision has started to degrade quite drastically (I have glasses, but a very, very weak prescription for astigmatism) since I've started on these pills. My neuroligist had initially said that he would refer me to an opthamologist, as topamax can cause permanent vision damage and/or loss, but when I tried to get his office to get me the referral, they then told me to go to my family doctor to be referred instead.  

    I've been asking my neurologist since January to take me off of the topamax, since there's been no benefit, and he still has me on it. 

    //On a side note, as others have recommended on some of the other forums - I've had some pain relief from propranolol 200mg/day. It's a blood pressure med, but used off label to prevent migraines. It hasn't stopped it entirely, just dulled it down and as soon as I stop the propranolol the pain comes back with a vengeance - but it has removed the need for morphine and most of the other painkillers.

    Hope you find relief, cheers from Canada!

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  • Posted

    Hi, having stopped Topiramate which was something I was in favour of due to the side effects I was experiencing. I have now been prescribed Propanolol but am yet to start taking it, has anyone had propanolol for migraines ? Ive also been prescribed imigran although this hasnt worked previously.
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  • Posted

    Hi Julie

    I have taken propranolol in the past and found it did work for me but imigran normally work for me too but not always. At the moment I'm going cold turkey from all meds and pain killers and it has been horrendous but hoping it gets better soon.

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  • Posted

    I have been on every migraine prevention tablet fromnthe doctor inhave had migraine for thirty years

    ten weeks ago i was put on toporimate starting on 25mg working my way upto 100mg this was the worse drug i have ever had side effects terrible and still had migraine

    on the nhs site i found the national migraine clinic in London i went last week and i am now on a four week plan i do believe what they have done for me will work i have been told it will take 3 months

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