I am right along with you. I had topamax added to my tegretol, started about two weeks ago. But I was on it for about 1 1/2 years back from 2003-05, so I know a bit of what to expect. I didn't then, and it turned me into a not so nice of a person. Mind that these are my experiences, and everyone will have a different experience with it. Both this time and last, carbonated beverages don't taste good, which is actually fine with me, I was back to drinking more than I had before. After a couple of months of topamax the first time, a friend pointed out i was acting like a real bitch. And, yes, he is still a friend today, I was grateful for his observation then and was able to manage the meanness (sp?) in me. I had become apathetic to others' feelings, over aggressive and not someone I would want to be around, either. Loud, bossy and rude. So I watch for those things now, especially at work. I noticed my ears and my scalp tingle, kind of weird, but tolerable. Now, this time my neuro put me on this for what she thinks is migraines, but also because I have a seizure disorder and after 15+years of tegretol, I have to lower the dose because the levels have come back high the last three times. But lowering it scares me, it has been my "safety" for all these years. It took me from having 2-3 seizures per week, sometimes 2-3 per day several times per week, to one every 4-6 weeks or so. I know that is not complete seizure control, but so much better that before. So now for the headaches I have been constantly having and for the seizures she adds topamax. But this time I am only going up to 100 mg at night. (start 75 mg tonight) Last time it was 100 mg twice per day. That made me have problems with "word finding" quite a bit, I am sure you have heard/read about that. And on the 100 mg twice a day I noticed I rambled a lot, too. Maybe that one is coming back! So I will cut out of here, good luck!

My daughter is going thru med change. Topamax was just added to Keppra & Tegrestol. Hopefully, they will be lowering the Tegrestol to NONE.

You are going thru a 'trial & error' phase. As Topcat said 'What Works for one, may not work for another'. Side effects are what we watch for, nor what will be. So, do some 'homework' . Learn about Topamax & what to watch for. Give it 4-6 wks. If it's working, (sure hope so) then you are good to go. :) If there are side effects, (tired, mood swings, etc.) w/ no seizures, ask yourself "Are they tolerable"? Go from there. One Day at a Time.

Love Candi

Forgot to add. :) If you haven't started a Journal, Now would be a GOOD time to do so. :) Candi

Topamax is the only thing I have ever been on for very mild seizures and it made my feet and hands very tingly. They felt like they were asleep all the time. It was so annoying that I decided to stop taking it and deal with the baby seizures once every six months. Of course, I wouldn't recommend doing that if you are dependent on these drugs but beware of that side effect.

Everyone goes through different side effects, I take Topamax in genric format I get blurred vission, tingly under my right corner lip, some left eye pain.

Before I had Brain Surgery , I had the Vagus Nerve Stmulator and was taking 5 different types of pils a day.(All together 30 pills a day). One of them was Topamax. It helped in contolling the seizures but how it killed my stomach(where I was having stomalot of stomach problems.) But every one is different in how their reactions are to medication.

Topamax was a bad thing for me. I had a few side effects on 25 mg a day...then they upped me to 50 and for like a week and a half I had no clue who I was.

I still don't remember everything that happened but it was a nightmare and after stopping it I had withdrawal effects.

I say just see how you do with it.

I know I won't go near it ever again.

I was on 100mg of topamax for 3 1/2 years, i just got off it 2 weeks ago, I already feel different. No tingly hands and feet, my legs don't fall asleep. I am still on the anti depressents god was I a B****. My son was telling me on a regular basis I needed a nap and it got worse when I was over tired. I am actually being weined off all my antiseizure meds, I only had the 1 seizure 3 1/2 years ago, so I asked the doc what he thought about me giving it a try. So I am now weining off Depakote ER, 3 weeks left to go so far so good. The side effects coming off aren't the greatest, but I am looking forward to the out come. Check out the topamax on the internet and with your doctor get all the info you can. Because all of are different.

topamax is the first thing they put me on & it made me very ill & not such a nice person. I didnt not like it at all.

I was taking tegretol to prevent seizures and the doctor put me on a large dose of topamax to prevent migraines. I worked well for that. The only side effect was that I lost a significant amount of weight, which I needed. Sometimes topamax is used off-label for weight loss. Then my tegretol was phased out because topamax was supposed to work for seizures. The first day I was completely off tegretol I started having "partial" seizures. I mean a lot of them. So I went back on tegretol, while also taking topamax. But eventually it lost it's preventative effect and also it's weight-loss effect reached a plateau.

Topamax was a VERY bad med for me.

I was always grumpy, and super annoyed at the world. I was super depressed and didn't want to get out of bed at all. This is the opposite of my personality.

I had a lot of vision problems, and it turns out that this med actually increased the pressure in my eyes. NOT GOOD. I also had problems with the tingly hands/feet, which was weird feeling but not bad enough to quit the meds for. I also started developing new twitches/ticks with my eyes. Also seemed like I was experiencing MORE seizures/auras wit this med. All in all, this did NOT work to me. I went back to Keppra XR in a higher amount and got off of Topamax after being on it for about a month. It's been a few months since then, and Keppra XR doesn't seem to be cutting it anymore. I'm tapering up to Lamictal XR and hoping that this med will be the right one for me. Like everyone said, everybody has different side affects/reactions to diff meds. And like my doc said, all of this is mostly trial and error. Hopefully the right balance, amount, combination, will be easy to find for you and you will be feeling great. Prayers and best wishes to you. God bless!

I (thank god) haven't had any bad results on Topamax. I am on 400 mg a day and doing great. I do have mood swings but I am human. I get blurred vision I asked my doctor about that she said that is because my dose is too high. I was on depakote and it didn't work for me even though others said it was a miracle drug. And Topamax it working for me even though it looks like it isn't working for others. I would try it. If it doesn't work you can change it. But it could also be the best medicine ever.

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We currently have a client thats conducting an Epilepsy Research Study on December 4th & 7th it will be a telephone interview. They would like to speak with customers that suffer from Partial Seizures and are currently on medication for Epilepsy. The purpose of the research is to gather feedback and opinions, they would like the customers to view some websites before the interview and provide them with there opinions.

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Alba Griesbacker
Rob Horowitz Medical Markert Research
Tel: (212) 779-3633
Fax: (646) 519-2470
alba@rchorowitz.com

ive been on topmax for over 5yrs and i only get the tingling sensation in my hand feet and face when iam on the gentric med of it so if this happens to u ask for the brand name of it

I take generic Topamax (topiramate) for headaches. It does nothing for my seizures but works wonders for the brain pain. My main seizure med (I take 3) is phenobarb. Pheno is the only seizure med found to manage my seizures reasonably well after 24 years of trying all others.

Topamax is not recommended for use with phenobarb but I could no longer stand the headaches. I first was put on it after Cranial decompression surgery in 2002 but my insurance would no longer cover it and I could no longer afford it. As of this spring it became available in the States as a generic. So after 5 years of maddening headaches I am now back on it. The headaches are gone.

But as some others say, it makes me quite crabby. I seem to get over intense in conversation and I have a tendency to let my ranting win out over reason. I also have trouble finding words. I am more easily confused and disoriented. The tingling and numbness stuff is just normal for me so no problem there.

I have tried all the other meds for the head pain to no effect. So for now I will ride this out. That is something I am used to doing after 24 years of this game.

All these meds are powerful and have unique effects on each person. That is why we all seem to be on our own personal med cocktail. I think a journal is very good advice. It is the only way I can really remember :-)

God Bless and Good luck
Brkndad