United Brachial Plexus Network, Inc.

My seizures started when i was 13 i am now 20 they have been under control but recently I had one while taking depakote so my doctor switched me to Topamax. I have the same problem when it comes to the taste of any soda. I don't know what it is but it has this terrible metalic taste that i no longer enjoy. I also have the painful tingling in my hands and feet. The feet are more painful. I have lost weight since taking the med and I seem to not be hungry any more which makes everyone want to feed me. I am also cold all the time. I don't know about hearing a radio exactly but I hear like a pounding in my head that feels like it affects my heartbeat at the same time. When that happens it really freaks me out, but I am not really sure what I should be scared of and how to describe that pounding to my doctor
Thanks for listening!

dear kim,
if it helps any...i've been on topamax since being diagnosed and I'm a 47 year old "BP" mother of 5 and "nana" of 3...last May I graduated from college with a BA in psychology and did it after being dx in Jan. 2000! The topamax didn't affect me too seriously and any side effects actually went away after a few months. I am now weaning off it because of the new literature on it and because of the length of time that I've been on it, but my new med "Lamictal" is causing some of the same serious side-effects that all of you are describing and I am second-guessing my decision. My point, you can continue pursuing your education no matter what, it might take a little long, maybe no...don't let anything stop you...god bless you!...and god bless all of you...ronnie

Has anyone experienced a salty taste to everything since being on topamax? My husband has been on 25mg twice a day since 12-17-03, for neuropathy due to either diabetes type 2 or dialysis, or a combination of the two. We are still in the testing phase and I don't really have any info on what the exact cause is, or the type of neuropathy he has. It has been going on for 3 years, which is the same amount of time he has been on dialysis. Stupid doctors didn't want to believe him/us when we told them what was going on. His diagnosis came from a cardiologist in November. We thought he had some form of circulation problem with his legs and that's how we ended up with that specialist.
Some of the other side effects are metallic taste, aching pads of his feet, and the feeling of bugs crawling on him. This has all started within the last 4 days. He is supposed to increase his dosage to 50mg twice daily on the 24th. Am I to believe the side effects will increase with the dosage? From what I have read so far, the higher the dose, the worse the side effects.
In my quest for knowledge about this disease and topamax, I found another forum, www.braintalk.org . It has been most informative as well as this site. But I haven't come across anyone else taking topamax for their form of neuropathy. I may be in the wrong area to talk about the disease, but from what I have read, some of the side effects sound like what my husband has been experiencing from the neuropathy.
Anyone who has any additional info that might be useful to us about the topamax or neuropathy can feel free to email me directly.
Thanx in advance!
kraazykat

This stuff is awful.My eyes are swollen shut every morninig. I am confused and stagger all over the place. I studder when I talk.I hear things that are not there. GET THIS STUFF OFF THE MARKET. IT IS DANGEROUS!!!!!!!!1

Yes! I think I am experiencing the same problems...I wasn't sure if inability to reach orgasm was a common side effect, and the few I do have are not as intense as they used to be...I take 25mg of Topamax a day for migraines and it has worked beautifully. I have been taking it for 2 1/2 years and tried to taper off and discontinue it, but had a whopper of a headache within a few days, so I guess this is what I have to live with. But by reading what some people have to deal with, I count my blessings. I too find the topic embarrassing, and don't want to discuss it with my doctor, and all the other meds I tried before Topamax were useless.

Hi. I am also on Topamax for my fibromyalgia. I am only at 50mg at bedtime. I struggle with the drowsiness (it's like being a lazy drunk). I have lost as much as 5 pounds in one week because of lack of appetite. My doctorS are monitoring me carefully for I am also on zoloft and blood pressure meds. I have noticed a difference in the frequency of the pain but not interested in increasing the dosage for March-August are pretty good months for my Fibromyalgia seasonal affects. I must admit though, I am really freaking out and taking note of all the other side effects that I am reading of others. Please be careful you all!

Hi Kathy: I am a school counselor I too am experiencing the constipation and considering getting off the meds. It is Christmas break and I am experimenting with teas, laxatives, etc. and staying close to "home"...and still, nothing! I share your concern.

Hi kindaworried: ...so am I. I am working on my doctorate and struggling while on Topamax. It is very difficult to stay focused, form my thoughts or even hold my head up at times because of the drowsiness. I share your concern. I've started meditating right before studying to help. Keep the faith! Take it slow and continue to ask questions. Best wishes to your success.

hello,you are not alon. i am on topamax also. i am having a hard time typing this so bare with me. i was a 28 year old active girl happy as could be and i started to have seizures in high school. I have been on every medicine that there is. I have depression so I am also am also on zoloft 200mg. and lithium 900 mg. a day. I took topamax before because it is the only thing that stopped my seizures but it made me feel so crummy, well three weeks ago i went into the hospital for kidney stone surgery and had a seizure right there. So, now I am back on it 400 mg. and they want to take me up to 1200mg. I can hardly function now. I am very hateful and i not like that. i hear things in my ears i tried to cook a cake for a hour and 46 min i can't write i can't tell a story i am constipated my eyes hurt, i can't drive, can't count money, i got lost in dillards department store, i slurr my speach horrible, moody, emmotion, seep day and night, i don't want to eat, and that is what is real odd is thqt my taste buds are distroyed. everything tastes just like dirty water. i have been taking 400mg for 2 weeks so i thought that my body would have adjusted to it by now and it has not. i can not even remember what i did this morning. i am really glad that i don't have children to take care of i would be in trouble, i am glad that i have a boyfriend and a father to help me up the stairs and down because i can't even do that on my own. it is so bad that and i an so in coharent that when i walk i run into walls. bad that you have to 400.00 a month on meds to make you feel this way, but no seizures, I was having sometimes up to 3 a day. To day I found this web site because i was getting a little worried about myself and was looking for side effects, now i know i am now the only child suffering out there. i hope she gets gets better.

thanks Lucinda

hello,you are not alon. i am on topamax also. i am having a hard time typing this so bare with me. i was a 28 year old active girl happy as could be and i started to have seizures in high school. I have been on every medicine that there is. I have depression so I am also am also on zoloft 200mg. and lithium 900 mg. a day. I took topamax before because it is the only thing that stopped my seizures but it made me feel so crummy, well three weeks ago i went into the hospital for kidney stone surgery and had a seizure right there. So, now I am back on it 400 mg. and they want to take me up to 1200mg. I can hardly function now. I am very hateful and i not like that. i hear things in my ears i tried to cook a cake for a hour and 46 min i can't write i can't tell a story i am constipated my eyes hurt, i can't drive, can't count money, i got lost in dillards department store, i slurr my speach horrible, moody, emmotion, seep day and night, i don't want to eat, and that is what is real odd is thqt my taste buds are distroyed. everything tastes just like dirty water. i have been taking 400mg for 2 weeks so i thought that my body would have adjusted to it by now and it has not. i can not even remember what i did this morning. i am really glad that i don't have children to take care of i would be in trouble, i am glad that i have a boyfriend and a father to help me up the stairs and down because i can't even do that on my own. it is so bad that and i an so in coharent that when i walk i run into walls. bad that you have to 400.00 a month on meds to make you feel this way, but no seizures, I was having sometimes up to 3 a day. To day I found this web site because i was getting a little worried about myself and was looking for side effects, now i know i am now the only child suffering out there. i hope she gets gets better.

thanks Lucinda