Side effects of topiramate is driving me insane, some advice would be appreciated.

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I was recently diagnoised with Intracranial Hypertension after having headaches for way over two years to a point where I litrally couldn't lift my head off of my pillow on a morning. I was in absolute agony. But I got to a point where it just became a normal thing. I was investigated under neurology around two years ago, and they passed it off as normal headaches after a CT scan came back normal.

I work in an opticians and realised that dizziness, migranes, light-headedness were becoming regular things as well as my vision becoming a real problem in my left eye when one of the optomertrists recommended they check up on my vision and realised I had a field defect and papilledema on my left optic nerve. He gave me an urgent referral to neurology.

The neurologist was convinced I had no problems, even after me telling him where the referral had come from, he still said he didn't know who had referred me and why. But said because it had been investigated before, to put it to rest he would send me for a lumbar puncture. He also said he would eat his hat if I had a problem.

I had my lumbar puncture and it came back that my CSF pressure was 37, and that it needs treating. I am now under opthalmology, and on medication. But I am not taking very well to the medication at all. At first the doctors put me on acetazolamide, and that put me in A&E. So they adviced me against that. Then my neurologist suggested Topiramate. The effects weren't bad at first. My GP recommended that I stay off work the first week as I'm not just on one floor and with some of the side effects, I may be a bit disorientated. It's now been 4 weeks and I am stll not back at work. I've lost nearly a stone in the last week from vomiting which my GP said will just be the dose (how quick they've upped it), I have no appetite, I just feel so dizzy and unsteady all the time and the tingling in my hands and feet are driving me crackers!! I just feel like I'm complaining constantly. I also find simple tasks like adding numbers up or just trying to remember simple things are becoming a problem. Has anyone else had an experience like this? I don't know anyone on this medication and don't want to keep bothering my GP.

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    I've been on it since February and I hate it. They are trying to up my dose. I have had nothing but problems over the last 2 months. My neurologist is giving me an alternative. It has messed with me emotionally and mentally I tried upping it but I got really bad with my emotions by body couldn't handle it. The tingling and numbness has never gone for me. I get ringing in my ears and blared vision all the time. I had a lumber puncture 4 years ago and I've begged for another one as I didn't suffer with a migraine for 6 months afterwards but each time I am refused even though I had pressure. The same as you I have IIH but the pressure has not been too mad to them to do an LP. Hope you got sorted x

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