Does anyone take topirimate for IIH?

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I've been taking Topirimate for InterCranial Hypertension for around 12 months now, originally posted on this site for information about the tablets because I was having a lot of bad symptoms with them. However I continued with them as the only other option was a shunt of some sort so I have decided to continue with the tablets.

The memory loss, hair thinning, weight loss, tingling in hands and feet and quite a few other symptoms have continued but they have dulled down, even though my dosage got higher (100mg morning, 100mg evening) but the headaches are still there. The swelling on my optic nerves has reduced and kept stable but I'm yet to have another lumbar puncture. The main concerns for me are the headaches still being there, occasional neck pain and the weight loss that is coming up to 5 stone in around 12 months.

Has anyone had a similar experience or know what happens along the way? I just feel a bit lost! I feel a bit pathetic really but when you speak to the neurologist it's not always as reassuring as you'd like it to be and I haven't spoken to anyone with IIH as yet. I just feel like a bit of advice might help me a little bit at this point sad

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4 Replies

  • Posted

    Hey I'm 20 years old and I'm so lost aswell I can't even act like a 20 year old and have yet to find someone to talk to about it. Just started this medicine today (I was on diamox for a year)

    I would seriously love to talk to somebody

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  • Posted

    I started on 150mg topiramate 2 months ago for intracranial hypertension after being on Diamox for 10 months. I never had optic nerve swelling, but I did have transverse sinus stenosis because of the high pressure & had to have stent placement last October. My pressure headaches didn't even start until AFTER the stent surgery. The only way I knew about the stenosis was because I had debilitating pulsatile tinnitus for about 14 months before doctors would take me seriously. Because I wasn't overweight & didn't have optic nerve swelling, they were hesitant to even give me a lumbar puncture. The LP was high enough to diagnose intracranial hypertension. When I was on Diamox I felt like a zombie & would have huge lapses in memory, like blackouts. I kind of felt like I was in a dream-like state all the time, so sometimes I wouldn't even speak to people when they were speaking to me because I didn't think the situation was real! Topiramate has made me feel human again, but it doesn't effectively decrease the fluid like Diamox does, so my headaches are far worse on topiramate. The actual reason I switched is because Diamox (generic) costs me $400 per month, and topirimate costs me $20. I'm just having to suck it up to save that extra money. Intracranial hypertension sucks!!
  • Posted

    I'm 20 years old, will turn 21 in September. I recently was just diagnosed with mild IIH ( one month 1/2 ago) I thought it was migraines but the doctor made me have a MRI, then spinal tap. Then I ended up having to have a blood patch done after the spinal tap because of a spinal leak! Urgh it was horrible. Anyway. My opening pressure during spinal tap was 25 so he diagnosed me with IIH. I'm on Topirmate ( topamax) 50 mg, 2 pills before bedtime. He started me out on 25 mg 1 pill at bed time then after 2 weeks up it to 50 mg, 2 pills. So far it's been working great been on it for about 6 1/2 weeks now. And past 2 days I've had a really bad headache. The headaches I had before I started on topomax. Gonna wait a few more days and if they don't get better gonna call the doctor and see if he can up my dosage on the topomax maybe? They said it goes up to 200 mg so maybe all I need is to gradually go up a dose if this headache isn't better in a few days?? No side effects from this medicine besides I have noticed I haven't been as hungry as usual but that's it on the side effects. Anyways, they said usually lumbar punctures help people with IIH but not in my case considering I had to have the blood patch after lumbar puncture and it was horrible experience for me over all. I dealt with headaches for a very long time before I finally went to the neurologists this past May. I know what your dealing with, nobody knows how bad headaches are until they have them! They are seriously no joke and can ruin everything! I wish you the best of luck, please keep me updated. Your the first person I've heard to have IIH as well. When I was diagnosed this was the first I had heard of it. Prayers and get well wishes to you.

  • Posted

    I was diagnosed with Hydrocephalus about nine years ago in my early forty.  It is usually diagnosed in children but there are some that aren't diagnosed until adults.  I was having a CT scan trying to figure out why I had all of a sudden developed a headache that refused to go away.  I had this continuous headache with varying degrees of pain at all times when mine was diagnosed.

    Hydrocephalus is diagnosed by the presence of ventricles of increased size in the brain.  These larger than normal ventricles lead to more fluid in the brain and thus more pressure.  

    I had a shunt put in about 5 years ago to try to alleviate some of the pain but it wasn't successful.  I recently after becoming very frustrated of being in constant pain for nine years went to see a new neurologist who had never seen my case before.  After speaking to my husband and myself for quite a while, looking at all my old scans and doing a few tests himself he made some suggestions.  The first was to try to get off all the opiads I have been taking as they are probably just making my headaches worse and to start taking Toprimate again.  I took it about 6 - 7 years ago for about 9 months but quite because the mental fog and not being able to think up words was really interfering with my job and school work.  I was going to school to complete my Accounting degree while work as a junior accountant.

    I did not have a lot of the other symptoms described.  I did not like pop anymore, which was good because it was bad for me and my husband hated it when I drank it.  I lost weight which is always good in my books.  The only other symptoms I had were the 2 that caused me to stop it were the brain fog and the blanking on words at the worst times.

    I took my first dose last night and today I already am feeling light headed but I am open to seeing what happens.  I have been in constant pain for 9 years and would love to have a few pain free days.  When I took it the first time it did severely lower the pain level even if it didn't completely take it away.

    I had I believe 4 lumbar puntures so far.  They were just testing my pressure but my pressure was never super high so they did not change much.  I did have a bad reaction to one though and thought I was going to die.  If I moved in the slightest my head hurt so bad I was violent vomiting instantly.  My mother came to take me to the hospital.  On the way from my house to the hospital which is about a 15 minutes drive she had to pull over about 8 times so I could vomit out my door as I couldn't even get out of the car.  She was scared she thought I was going to die and I wanted to. I would say if you seriously do not need the lumbar puncture do not have one.

    I don't know what else to tell you.  If you have any questions let me know.

    Good luck with your treatment.


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