topamax

[Theresa Olivier]

Has anyone been on topamax?

[Lrjg]

Julie, I was never put on it for my seizures.  It was when I was at my Psychologists office a couple days ago that she mentioned the drug "Topamax".  It was mentioned for mood stablization.  I had told her that I knew of the drug for seizures.  I had heard that it is used for different problems.  My sister-in-law was on it for migraines.  The medication I was put on for depression caused severe weight gain and I went off of it.  I gained 35 lbs. in a month and a half when put on the depression medicine.  I hadn't gained a pound in almost three years until this time.  It was from my Temporal lobe surgery that caused my depression and problems that this drug, Topamax, I was told may help me.  This was the reason for my questions about this drug.  If I could find this drug, Topamax to help me with mood stability and help me lose weight at the same time, I am willing to try it with side affects if they are tolerable.  How tolerable was my question.

[bryan farley]

I take generic topamax as a secondary med, mostly for headaches and it works fine. When I took it as my primary, I didn't love it.

I recall having more stomach issues, but that could have been the food I was eating. My memory might have been effected too. My wife seems to think so. I was probably overmedicated. My new med is much better. I also do not have cluster headaches like I had before, which could be helped from a number of things.

[Lrjg]

bryan, I am still back and forth with taking it or not.  Your headaches returning may mean it was good for the migraines.  I don't think the Phychiatrist is going to prescribe it to me.  I have a feeling she is going to make me go see the Neurologist for it.  My reason for taking it isn't for the seizures so I don't know.  The fact that I wouldn't be taking it for seizures makes me think, if I don't like the side affects, I can just go off of it whenever I want.  Weight loss and help with my emotions is what I hope it helps taking it.

[Betty Anne]

Laura,

I have been on Topamax for about 10 years now.  While it has helped me, it is starting to lose its effect, and I just added Lamictal two months ago (well, the generic, lamotrogine). 

Anyway, it has been my experience that Topamax just helps you "lose your Depakote weight."  While I never took Depakote, I only lost a little weight on Topamax, then, after a month or two, began eating regularly again.  As for emotions?  It can help, or it can really hurt.  (One of Topamax's little-known side effects is "Topamax Psychosis," which I think pixiebell and Dave may have been talking about, to a lesser extent, where you can really lose control)  It had been good for seizure control, but it is a strong drug, and it has messed with my verbal skills, such as word-finding, and writing.  If I hadn't needed it, I wouldn't have been taking it.

Good luck,

Betty Anne

[Lrjg]

Thanks for the info. Betty Anne!  It is hearing over and over again about the trouble finding words while taking that drug that makes me nervous.  I have enough trouble after my TL surgery with finding words now!  I still have a couple weeks to think about it.  I guess I am more likely to try it only because it wouldn't be taken for seizures.  I guess my thought is that I am feeling like I would try anything to help me lose weight right now.  I sit here starving from not eating much for the past 6 weeks and not losing much weight at all.  I am hoping the "starving" feeling it takes away and maybe somehow the metabolism would change too.???  With the past reactions to epilepsy medication, I am not holding my breath that this one will be a great thing for me.

[Lisa Buchanan]

Hi

I've been on topamax for several years. I take it at night before I go to bed.  My other seizure medications

is taken during the day.  I tried to take the topamax during the day but it brought on seizures.  This is because

the topamax does make you sleepy.  When I get tired and sleepy I must sleep.  When I don't sleep I have a seizure.  This is why the topamax works well for me at night.  It puts me in a good sleep.

[Lrjg]

Lisa,  That sounds like good advice if I go ahead and take the Topamax.

[bryan farley]

word recall! That's what I was trying to remember. It had been really bad.

I am not sure how bad my memory problems have been. I think sometimes those of us with epilepsy overstate this, in part because we are always asked about our memory. People without epilepsy are not usually asked about their memory. Compared to humans, my memory is pretty good, and I was also going through some tough times in my life when I was taking Topamax so maybe my memory would have been shaky anyway.

bf

[Lrjg]

I have one choice and that is to try it and see what it does to me.  Just from this forum, I have learned that side affects can be totally different from person to person.  There are meds. that some on here take now that I tried and ended up unconscious taking it on a dose that wasn't even therapuetic yet!  When I went and did a search online with this med., the thing I read that scares me the most was from some Topax forum elsewhere saying repeatedly that they lost 50% of their hair!  They said it never grew back when they went off of it.  My hair is thick, but I want to keep it thick.  I wear my hair short and have to use hairspray everyday to make sure the scaring can not be seen.  It burns me when my daughter lets me know that it can be seen on some days.  The memory thing may bother my husband.  Some days are worse for me than others.  Speaking sentences and not finding a word is usually the only time I find my memory bad.  I don't know it is sometimes until we go out as a family and someone brings up something about a vacation, restaurant, etc. that we have been to and they act like it was yesterday and I don't remember ever being there.  I still don't think this Phychiatrist will prescribe it to me without seeing the neurologist.  We do a lot of long distance traveling right now.  My daughter plays basketball in college.  I don't want to start this drug until it is all over.  The timing of my appointment to see this doctor at the end of this month could be good!

[I&R Group]

The Epilepsy Resource Center thanks everyone for sharing their stories on topamax and we look forward to hearing from you again.

Best wishes,
Mary Ann
Epilepsy Foundation
Epilepsy Resource Center

Please check out these Foundation programs:
Take Charge: http://www.takechargeteens.org/
Go EYC: http://www.goeyc.org/
School Nurse Online Training: http://www.nasn.org/Default.aspx?tabid=120
Epilepsy and Seizure Response Training for Law Enforcement: http://www.epilepsyfoundation.org/firstresponders/index.cfm
 

[Tony Murray]

I was on Topamax and had terrible side effects. Don't think that doesn't work for one person won't work for you. Hopefully I was one of a very small percent.