Topamax?

[Kristina112380]

Topamax?
Has aqnyone ever tried that? My doc is calling it in today, and I am asking about experiences with it. PLease let me know, thnx.

 

[hawke86]

I have taken it. It always made me tired.

 

[Junebug]

I am currently on it right now with my Lamictal but my dr is taking me off of it and replacing it with Keppra.
I myself didn't find that it helped me much. It is an "add-on" drug and is not used alone to treat epil. What are you taking the Topamax with?
Topamax, when used alone is used in high doses and used as a weight loss drug so you can expect some weight loss. I found that it made me a little 'dopey' and I would forget things that I already knew and have known for a long time, such as good friends' names or movies that I have seen a few times.
I found that I had a hard time drinking soda when I first started taking topamax. The carbonation almost hurt my tounge and I had bad diareahh (sorry if it's TMI, that's just the side effect I had) everytime I had soda.
Now it's not so bad but I kinda got used to it and I've been on it for about a year and a half.
I can't really say if I'm fatigued or not, all my AED's make me tired so I can't say if the Topamax makes me tired or not. LOL!

I hope you find that the Topamax works for you, for some it does, others it doesn't. I *think* it is one of those drugs that only works for so long and is not a long term drug.

Good luck!

 

[hawke86]

I was on it until I became immune to it, where it quit working.

 

[Kristina112380]

Well, I guess I am just SOL because I cant afford over $674, and they said no generics avail. AAAUUUGGGHHH!!!!!!!! I just found out now, on the phone w the pharm. need prayers!

 

[Kristina112380]

Sorry I got cranky guys, I didnt mean too. I seem to not be able to afford meds, and my doctor cant seem to get his head out of his butt, and get me something affordable. (or at least try and work with me) So, he told me to stop taking the phenytoin. I did. I feel ok, but bad headache. I am not taking anything ,so PLEASE pray I dont have more seizures til I get something else to take!!! Thank you guys so much, and again , I apologize for getting cranky. I will be back on soon, but tomorroa, I will be cooking if I can, and if I dont "you know". )

 

[skillefer]

Kristina, have you tried actually contacting the pharmaceutical companies? They have programs for people with low incomes to provide them with meds that they can afford.

 

[Nancy]

I've been on Topamax since it became available ......
Now I take three 100 mg tablets each day. I also take four 300 mg of Trileptal pre day.

In the beginning of Topamax I did have a very serious weight loss crash but dramatically changing the dosage and "starting over" worked just fine ----- well, not too fine.... it did not stop the seizures but nothing else had either.

After my surgeries the epi wants me to continue the same meds at the same dosage for a couple of years and then we will start reducing them. She hopes to reduce, maybe get rid of, Trileptal first. I have been told that I will be on AEDs for the rest of my life even if I never have another seizure.

 

[doihaveepilepsy]

i currently take topamax, it worked at first but now i am starting to have more seizures again, because i think my doesage needs adjusting. I do get quite tired alot and when the dosage is ajusted i also get a bit spaced out, the weight loss side effcts can also be dramatic especially if your not overweight to start with.

 

[sixpack]

my daughter hasn't been on topamax for two reasons---the weight loss aspect and that Topamax can cause cataracts. My daughter is already legally blind and I just don't want that added to her list of issues.

Why not trileptal? There is a generic form of that one. It is also a first line AED.

The sad thing is that all AED's have a potential for reactions. Many involve fatigue/tiredness etc. Also many of the reactions go away after you take the med for a while. You just have to decide if the reactions are a mere annoyance or if they are life altering. The thing you need to worry the most about are true allergic reactions. For instance when Lindsay took Trileptal and Lamictal, the two drugs interacted with her system incorrectly and basically caused her body to react as if she were overdosed. It happened twice on the meds and the doc told me that with some folks the two drugs will react that way. Scary---so we took her off the Lamictal and added a different med. At this point that has been her scariest drug reaction. Hopefully that will be her last.

 

[Kristina112380]

Hi all. Sorry for my absence lately, I have been super crazy busy. I am writing for a sec, and I will be back,lol.
Anyway, I havent been taking any meds and I have had no seizures for a lil while. I felt bad yesterday, and my hand started convulsing. My right one. WEIRD! for just a few seconds. Anyway, I got a list of meds from Walmart, and they have carbamazipine for $4 for 30 day supple, so I will try it. Ok, love ya guys, but I gotta get dinner ready,lol. ttyl . hugs!

 

[KARDSHARQUE]

I've been on Topamax but stopped it on my own. I suffered from Deep Vein Thrumbosus. After going through so much pain and finding out in the emergency room I had DVT I decided to look up the side effects of the meds I took. I found out that DVT was a rare side effect from Topamax. I mentioed it to my neurologist whom disagreed and had me continue taking it. When I got my next refill I told my pharmacist about my findings. The pharmacist showed me the papers that come with the meds explaining the side effects. It was pointed out to me where it says DVT is a possible side effect of Topamax. I then stopped it on my own. My neuro then agreed with me only to disagree at my next appointment.