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cupacoffee

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Hi,
Iam the mom of a 16y/o who had her first seizure in Sept. It has been quite a trip since then. She was started on Topamax and the side effects are awful.Not even at theraputic dose yet. We have a Veeg scheduled this week so we haven't increased the dose. It appears to me as if the medication actually increased the seizes and types of seizures or is this just how epilepsy rears its head. I am glad all of you guys are here.
Thanks:brain:
 
Hi, Cuppacoffee,

Welcome to the forum! There are lots of parents in here, many with teenagers, so you have lots of company.

What kind of seizures is your daughter having?

I was on Topamax. I couldn't think, food was repulsive to me and tasted like metal, slept all the time, and was deeply depressed. It's a hard drug for lots of folks. You'll get an earfull about it in here.

An increase in seizures wasn't listed in the Topamax package insert. But that doesn't mean it doesn't happen. Side effects happen all the time that doctors don't report to the FDA, and it doesn't make it into the literature.

I didn't find anything on "Ask A Patient" either, but that could be because no one had inputted it yet.

Ask a Patient (A site where actual patients share their experiences with medications)
Topamax Package Insert

If your daughter's seizures have been increasing, it is also possible it is a natural progression. Seizures sometimes get worse over time until they are successfully treated,. Sometimes they can escalate pretty fast.

While her seizures aren't under control, it's a good time to explore any other possible causes for the seizures - cardiac, diet, allergy, etc. In the majority of cases no cause is ever found, but if you can find a cause and fix it, it may save her from a lifetime of these anti-seizure drugs. They aren't a picnic, but are necessary if seizures are still happening.

Good luck on the video EEG. Nothing hurts, but it's pretty boring. They'll keep her in bed, except to use the restroom. Your hospital may or may not let her use electronics like a laptop or iPod. They probably won't let her use earbuds or headphones - they interfere with the electrodes. So take lots of games, books, etc. Take about a half cup of any kind of oil with you to the hospital (olive, baby, canola, etc.) It's to take out the glue at the end of the week. Rub it into her scalp for about 20 minutes, especially on the little balls of glue. It'll get it all out.

Good luck. Will you let us know how she is doing?
 
We started out with left temporal added generalized,simple complex,myoclonic jerks and mre to come I am sure.Her neurologist says the myoclonic jerks are not seizures but I think they are. Sometimes 100 in a day. She has lost 20lbs in a month,her hair started to fall out but I don't know if its from the topamax or the poor nutrition from the topamax.
I am so glad to be able to vent, the tears don't seem to want to let up . Some days I can keep my prespective today doesn't seem to be one of them.
thanks
 
Welcome
My daughters seizures began at the age of 14.
Meds definitely made my daughters seizures worse. The only thing that has improved her quality of life is making major changes in her nutritional choices.

It is a difficult time, while you are learning and gaining a sense of perspective on the situation. I learned that Doctors are only guessing. There is no way they can know for sure. Your best bet is to keep a journal, so that you can 1. give more info to the doctor so they can make better decisions 2. you can challenge the doctor as to their diagnosis and protocol 3. you can use your intuition and access to internet research, to grow more knowlegable.

Stay strong, deep breaths, and continue putting words into google searches, and be open to all possiblities.

Hug your daughter for me.
 
Hello Cuppacoffee,
I am so sorry to read about your daughter, and what you go through at the moment. My husband is epileptic, and sometimes it is so frustrating that you don't get the answers you seek. You think, they can transplant heart/lung in one operation, why cant I have an answer to this, PLEASE !?!? Hope you do better at the moment, wishing it for you !
 
Hi CuppaCoffee
My daughter is also on Topomax, she has been on it for almost 3 years, after her initial grand mal seizure 3 years ago.
She is now 16 years old, and recently has had 2 seizures after going for 6 months without one, 2 years without one before that. So all total she has had 4 in the past 3 years. While I am grateful, for that, I am getting concerned as to why she is having them now.
My daughters name is Katherine and she is on Topomax 250 mg. a day, and she has had some really uncomfortable side effects. In the beginning she had bad stomach pains, and just didn't feel well. As time has gone on and at times the dose had had to be increased she has experienced hair loss, fatigue, memory loss, and just feels out of sorts alot of the time. She is very active in sports and manages to keep up, but her school work has suffered, and I have hired a tutor to help with her school work. I feel helpless and am consumed with this epilepsy that she has. Please let us know how the VEEG turns out. Look forward to talking with you again.
 
well the video eeg results are still pending. i am so glad we changed neurologists because the one who ordered the veeg has not even contacted me. That helpless consumed feeling i think holds on to alot of us parents. we are looking for answers that do not seem to come. I have had some good days when i remember it could be far worse,and keep my perspective. Olivias topamax is now lowered and keppra was added we are not seeing much success,still lots of seizures and more side effects. She will have another 24hr.eeg on saturday.
 
I am so glad your daughter is trying to keep up with things ,it seems very hard with the fatigue and brain fog. I hope Katherine knows how proud you are of her and that things get better
 
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