Feeling a bit like Alice in Wonderland on Topamax!

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Hi there, I have been taking Topamax now for around 8 months. Every few days I experience severe burning throughout my head, and sometimes the room even seems to move in waves, and I know this probably sounds completely nuts!...but objects & people seem to shrink in size..as though from 'Alice in Wonderland' at first it was a little funny, but now it is frightening. I have told my neurologist of my concerns, and he has told me to hang in there. I have started taking different vitamins and changing my diet etc, and this has helped a lot, but unfortunately these symptoms come back. Has anyone else experienced these symptoms on Topamax?? Cheers! Summer :)

Comments

Re: Feeling a bit like Alice in Wonderland on Topamax!

Submitted by plopdan on Fri, 2008-04-04 - 07:28

I have'nt had Topamax yet! But I'am getting a bit concerned about the way Epi's are treated concerning there med's across the world especially in the U.S.A. Now I'm not getting at your system's of treatment who am I to say yes or no but 8 months of suffering to be told hang in there. I mean how long does he /she want you to hang in there for, I may be wrong but I would have thought if it was going to work it would have by now. Surely there must be other med's you have'nt tried yet or combinations that have had partial success with minimal side effect's. Granted there are good doc's and bad doc's no matter where you live. Ever thought of getting a second opinion if possible. Some one out there might be able to give you better advice than I. But I have only your best health at heart.

Hope you get better soon

plopdan u.k

I have'nt had Topamax yet! But I'am getting a bit concerned about the way Epi's are treated concerning there med's across the world especially in the U.S.A. Now I'm not getting at your system's of treatment who am I to say yes or no but 8 months of suffering to be told hang in there. I mean how long does he /she want you to hang in there for, I may be wrong but I would have thought if it was going to work it would have by now. Surely there must be other med's you have'nt tried yet or combinations that have had partial success with minimal side effect's. Granted there are good doc's and bad doc's no matter where you live. Ever thought of getting a second opinion if possible. Some one out there might be able to give you better advice than I. But I have only your best health at heart.

Hope you get better soon

plopdan u.k

Re: Feeling a bit like Alice in Wonderland on Topamax!

Submitted by patriciamia on Wed, 2008-04-09 - 22:12

I switched from 2500 mg of Depakote to 400 mg of Topamax in November 2006 I think I had completely gotten to the 400 mg of Topamax by January and after that I had crazy tingling in my hands feet - weird double vision, my moods would swing from really, really ecstatic to super depressed -- like ready to die, crazy sensations in my head and double vision. I was convinced I was dying from some horrible disease or like I wouldn't live the next six months. By April I had developed a full on anxiety disorder. And my neuro had stopped returning my calls. I don't know if this means. Sometimes I feel like everything in the room is smaller and I am gigantic. Reading these posts makes me feel like maybe it is the med. I have never in my life been on medication until these seizures started 51/2 years ago. I thought maybe I was experiencing withdrawals from Depakote. Everyone says my personality has changed this year. Maybe it's the Topamax. It's taken me forever to finish my projects. I'm in grad school. I can't think or teach classes as clearly as I used to. My relationship is falling apart because I forget to do things and be as cheerful and sweet and romantic as I want to be. Help!

Re: Feeling a bit like Alice in Wonderland on Topamax!

Submitted by paroxysm on Thu, 2008-04-10 - 12:54

Were you ok on a lower dose of Topamax? It may be that you just need to lower your dose...or you need to come off it all together.

I've been on topamax since 1996 (I'm on 450mg right now). The side effects I had when I first started were:

Severe tingling in fingers and toes (like they were falling asleep- but it wouldn't go away). This side effect went away about a month in to my top dose- although I still get mild tingling if I'm very sleepy or dehydrated.

Hair loss- lots of it!! My hair went from long to short, was freaky. It fell out and broke and felt like straw. You'll be glad to know that this side effect went away too and my hair is growing and healthy and soft again.

Pee problems (don't know how else to put that one). I had to go constantly! And I had to go out of the blue- like I didn't have to go, and then all of a sudden I had to go so bad that if there wasn't a bathroom in the vicinity there was athreat of wetting myself. If I remember correctly I even 'dribbled' in my panties a couple times (eww I know). This went away also, I still do get 'urgency' once and a rare while if I drink too much.

Food/soda tasted bad/weird. Especially chocolate/sweets and diet soda. I was one of the people that went to an anorexic looking weight. The taste side effect went away (or else I got used to it?) and I love chocolate and drink diet coke/fresca now just fine. Unfortunately I still look like a twig even if I eat like a cow.

Concentration left the building. I'm smart- I wasn't smart anymore. This side effect didn't go away- but it is better, probably with 'adaption'. Learning new tools to concentrate.

Memory= gone. All short term memory just disappeared. someone could tell me something, then ask 5 minutes later about it and I was like 'huh?'. It felt awful and humiliating. They don't nickname the drug "Stupimax" and Dopamax for nothing. This side effect is much improved- again with adaption, and the use of memory tools. I play alot of brain games like crossword puzzles, math games, etc. At first it was horribly frustrating because things that used to be easy all of a sudden were really really hard- but now, well- they're kind of easy again. Short term memory still sucks as far as auditory goes, but I'm able to recall most things.

In the mornign I saw 'light chasers' in my eyes. In fact I jiggled my head and would walk around the room just to see them because I thought they were funny. This went away- I don't remember when though.

Hot/cold temperatures are very extreme (still) didn't go away.

Joint pain didn't go away.

Mood side effects- I changed on topamax entirely. From easy going to irratable, jumpy, depressed and just flat out moody. I'm still very different than I was pre-topamax. I'm alot more irritable. I get angry easier. But, It has stabalized. I'm not depressed and as a whole I'm happy.

Topamax was the first AED that stopped my gran mals. the one time I tried to stop topamax I had another gran mal. I think if I could find something else to use I would. so far though - this is it. I still have partial complex seizures. I take Dilantin and lamictal for those.

The things that I use to help the side effects of topamax (that work): Water, Postassium supplements (this is the most important one), selenium supplement (for hair), and when there used to be the funny tingling around the mouth- I sat down and breathed into my hands.

I know that was long but maybe it will help someone who's taking topamax see that they're not going nuts. I'm sure I left out about a million side effects but I think i got the most annoying ones for me.

Were you ok on a lower dose of Topamax? It may be that you just need to lower your dose...or you need to come off it all together. I've been on topamax since 1996 (I'm on 450mg right now). The side effects I had when I first started were: Severe tingling in fingers and toes (like they were falling asleep- but it wouldn't go away). This side effect went away about a month in to my top dose- although I still get mild tingling if I'm very sleepy or dehydrated. Hair loss- lots of it!! My hair went from long to short, was freaky. It fell out and broke and felt like straw. You'll be glad to know that this side effect went away too and my hair is growing and healthy and soft again. Pee problems (don't know how else to put that one). I had to go constantly! And I had to go out of the blue- like I didn't have to go, and then all of a sudden I had to go so bad that if there wasn't a bathroom in the vicinity there was athreat of wetting myself. If I remember correctly I even 'dribbled' in my panties a couple times (eww I know). This went away also, I still do get 'urgency' once and a rare while if I drink too much. Food/soda tasted bad/weird. Especially chocolate/sweets and diet soda. I was one of the people that went to an anorexic looking weight. The taste side effect went away (or else I got used to it?) and I love chocolate and drink diet coke/fresca now just fine. Unfortunately I still look like a twig even if I eat like a cow. Concentration left the building. I'm smart- I wasn't smart anymore. This side effect didn't go away- but it is better, probably with 'adaption'. Learning new tools to concentrate. Memory= gone. All short term memory just disappeared. someone could tell me something, then ask 5 minutes later about it and I was like 'huh?'. It felt awful and humiliating. They don't nickname the drug "Stupimax" and Dopamax for nothing. This side effect is much improved- again with adaption, and the use of memory tools. I play alot of brain games like crossword puzzles, math games, etc. At first it was horribly frustrating because things that used to be easy all of a sudden were really really hard- but now, well- they're kind of easy again. Short term memory still sucks as far as auditory goes, but I'm able to recall most things. In the mornign I saw 'light chasers' in my eyes. In fact I jiggled my head and would walk around the room just to see them because I thought they were funny. This went away- I don't remember when though. Hot/cold temperatures are very extreme (still) didn't go away. Joint pain didn't go away. Mood side effects- I changed on topamax entirely. From easy going to irratable, jumpy, depressed and just flat out moody. I'm still very different than I was pre-topamax. I'm alot more irritable. I get angry easier. But, It has stabalized. I'm not depressed and as a whole I'm happy. Topamax was the first AED that stopped my gran mals. the one time I tried to stop topamax I had another gran mal. I think if I could find something else to use I would. so far though - this is it. I still have partial complex seizures. I take Dilantin and lamictal for those. The things that I use to help the side effects of topamax (that work): Water, Postassium supplements (this is the most important one), selenium supplement (for hair), and when there used to be the funny tingling around the mouth- I sat down and breathed into my hands. I know that was long but maybe it will help someone who's taking topamax see that they're not going nuts. I'm sure I left out about a million side effects but I think i got the most annoying ones for me.