United Brachial Plexus Network, Inc.

man i smoke sometimes to and i have these feelings of where i become larger than everything in the room and it feels like i could become bigger than everything in the room. It feels the worst. It makes my heart race and my palms sweaty and feet too. I go to bed and i have a couple of convultions then i have an episode of where i really think a grand mal is going to happen then i wake up in a panic. I have only had two grand mals in my life i usually only have petite mal. usually they r not a big deal..sincethey took me off depakote i have not been doing good..they took me off cause my liver was starting to go bad.

Hi, I went on info about Tofamax to check out what this med was abouy an I notied yours first in that in that it motivated me and to give it a try understanding that we are all different in how we we react to medication..... But, please do understaned that you realyy did inspire me t write to you for from my heart, m, Dear Writer abour Topa,ax, You were truly an ininspirationnnnwatiion when I read I read I read Your letter that it deserved a response. Frm my ill i lost I ost 50 bs. in such a short time that the Dr. is afraid I wil lose too much again.. Thank for listening,. Linda onspire inspire inspire mr,. Linda












motivated me and gave me much hope in that

wow- im so glad to see someone else taking this medication for migrains also- i started on 50 mg and will be taking 100 soon because 50 doesn't seen to be working- i sing in a rock band and never had a problem remebering songs - now i seem to forget songs that i've been doing for years- my feet get numb,i have tunnel vision and slurred speech- i spoke with the doctor and he said that my body needed to adjust to the med. i hope he is right- because my migraines are way out of control- i have tried everything from imitrex to elevil and nothing seems to help anymore- wish me luck

hi mary - i too am on topamax for migrains - im on 50 mg. now and will be on a 100mg. soon because the 50 is not quite working . i too feel tingling in my feet and they go numb, i also have slurred speech,tunnel vision, forgetfullness,i do however have a problem fallen asleep and staying alseep- everyone else seems to sleep well with this med. and it seems to keep me up - i find that kind of odd(oh well)my tongue and throat is also extremely. i don't know what's going to happed when i start taking 100 mg. im not sure if i really want to do it-or if it's really worth it.

Hi everyone,
I've been on 225 mg of Topamax for about 8 months for migraines. It helps a lot, at least coupled with other meds. Up to now, the side effects have been minimal, but now I'm getting concerned. My fingers are turning white from loss of circulation, and then turn dark purple when I run warm water over them. And now one of my eyes is blurry. Obviously, I need to get in touch with the doc and lower my dose, but I'm curious as to whether anybody else has had these problems.

> my daughter is nine and developed a year ago complex
> partial seizure disorder. we were on trileptal and
> that seemed to be working until june. over the summer
> they switched her from trileptal to topamax. she is
> taking 150 mg a day. i have complained to the doc
> about the side effects but they keep upping her meds.
> her legs hurt, her arms legs and face go numb
> feeling, she has a horrible memory, cries for no
> reason, gets violent, is tired all the time. can
> anyone tell me if they have found any seizure meds
> that work with less side effects? we see our neuro in
> a week and i am going to tell him i want her off this
> med because her quality of life right now sucks
> because of this med. thanks in advance


Danielle....I just located this forum today and must comment on your post above and ask what has happened since September 30, 2003? Our son....age 6 1/2 was diagnosed at age 4 with complex partial seizure. One week ago from Sunday he had his 4th seizure. They have been so sparatic and brief...all the tests come back with nothing! We have also been on Tripleptal and the doctor has now added Topamax! He has also offered us to be part of a 2 year study at UCLA for children on Topamax. Since he was not born with this....how do we know this is worth it....what if he grows out of it? He just increased the dosage of Topamax and will do that over the next few weeks. After reading and researching because the doctor was so ambiguous....we are very skeptical about putting our son through this. The side effects you mentioned we thought might be anxiety because he is very emotional, but does great in school. I will bet it has a lot to do with the Trileptal. We were told by UCI we are seeing the best doctor available in our area, but we have our doubts.
Thanks, Arlene

I found this site in a search on Topomax side effects and would like to tell others of my results. I began this med for panic attacks that occur during my sleep cycle. My MD decided to revisit the fact that I had bouts of temporal lobe epilepsy as a teen and young adult. After six years of debilitating and increasing phobias and terror which have taken me to the very brink of sanity and have had me contemplating suicide, my MD said lets try Topomax and it has my savior. Yes I tingle in my face, hands and feet and it passes tingle into pain sometimes, sodas are bad tasting, sometimes I tremble, I'm having a little stomach upset, hitting the toilet more often and a some nausea, and no appetite. All these I can and will live with because I am ALIVE, physically and mentally!! What joy. I do pray for the well being of all of you and hope that each of you find the med that will work the best. Many blessing to you all. Leslye

WOW! Thank you all so much for all your input! My neurologist just gave me a prescription today to try Topomax (ween myself off Neuronton to use this). Forget it, I'm not even going to attempt this stuff! I specifically asked her about side effects, since I usually have a hard time with them, and all she mentioned to me was I may experience some tingling/numbness in my finger tips and nose, and maybe weight loss. I figured, okay great, a little tingling I could deal with, but after reading your posts there's no way.

Just the thought of hearing voices/music in my head scares me to death! Not to mention everything else I've read on this thread!

I know I read someone's post about being on the Topomax for headaches/migraines. Besides epilepsy, I've actually been on the Neurontin for headaches/migraines and it works beautifully without giving me any side effects.

Thank you all!

I have been on Topamax for 2 years....And Was also on Tegretol. The Tegretol...Masked the Epileptic Seizues....But Topamax has kept it in CONTROL. No Seizures in 2 years and I would Reccommend it to Epileptics--- IF they have good Insurance Coverage and IF they can Afford it...It's so Costly. I too have Had Memory Losses, and Wobbly Steps when I walk...But I'm not so sure that is all Topamax's fault. It may be and I've heard that those are some Effects of the Epilepsy.
So....Try not to Worry and Enjoy Life.
God Bless!

I have been on Topamax since May 2002. I take it for neuropathy in my hands and feet for spinal cord damage.
I have Arnold Chiari Malfarmation Type I and also have had a vertabrae removed in my neck and have a harms cage and plate in my neck.
I took neurontin for 3 years.
I started the Topamax slow at 25mil. for 4 nights and worked myself up under Doctors care until my present dose of 100mg 3 times a day and I have none of these voices or the radio in my head.
My only side effect beside weight loss is dryskin and it has dryed out my hair. I have lost 48 pounds so far and after the neurontin I sure needed that because the neurontin put a lot of weight on me and not all of it was water weight either (lol). and it did make my soda taste bad but I also wanted to get off that because soda isn't good for us anyway right.