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big problems comming off Topiramate

I'm hoping someone might be able to help me, i've been stuck on Topiramate for several years and have tried to come off it several times now but i find myself unable to get off it, i know the drug is not supposed to be addictive but everytime i try to reduce my dose even by a fraction i get an almighty headache, one which i refer to as a topiramate headache as it's a very specific feel to it, i recognize it instantly when it occurs, it's not like my usual migraine, i really feel like im going to die if i don't start taking it again which is why i've never been able to get off it, i think 3days is the most i've managed and it was unbearable with pain increasing daily, it feels like a tightness, a lack of water in my brain somehow like it's getting dehydrated badly, hard to explain but i know there must be some scientific explanation as to whats going on here, it's not my normal migraine im getting this is a unique headache which i only get when i stop Topiramate so i know it's causing the headache, i honestly feel like if i attempt to sit through and cold turkey that im going to give myself brain damage as it feels like im going to die.
Does anyone know of any reasons this might be happening? i'm hoping a doctor might read this and might be able to suggest a medication i could try to replace the Topiramate with which might stop this terrible withdrawal pain i get. I feel like a slave to this medicine, im completely trapped on this drug which makes me feel like a zombie and gives me terrible memory, i'd love to get off it but don't know how.
Any ideas?

  1. , I am so sorry to hear you have been struggling so much with weaning off of Topiramate. Of course, whenever we discontinue a medication it is important to work directly with our doctor. For your safety, we can't give you any specific medical advice over the internet (and we are not qualified to do so as we are not doctors)- but have you discussed this with the doctor who is prescribing the Topiramate? Or is it possible to discuss a slower withdrawal schedule with them?

    I also struggled with intolerable memory problems on Topiramate, and I am very, very sensitive to side effects/withdrawal from all medications. I personally often do a few things under my doctor's supervision when I withdraw from medications, first I start by taking a lower dose of the medication if it is available and go down from there (I never cut out cold turkey). If a lower dose is not available, sometimes for the first week I will take it once every other day, then cut down from there (maybe take it one day and skip two after that, then take it and skip two more days for the following week). With my doctors agreement sometimes I have to move slower than that. I'm not sure if that's clear or not- but I always have to work carefully with my doctor to discontinue any medication to not be in complete misery. Let me know what your doctor suggests might help you discontinue this medication safely with fewer side effects, and keep us posted on your progress! Warmly, Melanie (team member)

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