Newbie

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

T

Tweeny21

New
Messages
5
Reaction score
0
Points
0
Hello all, I am trying to gain some insight into epilipsy as my 21-year-old daughter was just diagnosed. It floored us all! She was very upset at first, but decided that it could be worse. She has had three grand mal seziures - two in her sleep and one in the car as I was driving her home from school. She is restricted from driving until six months seizure-free which has been tough for her. Fortunately, we've managed to get her to work and school without too much trouble so far. I believe she is suffering from anxiety which is compounded by her other symptoms from the medications. She worries about having a seizure in public - such as at school or work. She is on Keppra, and had started three weeks into Lamictal, but developed a rash and had to go off it right away. She is about to start Vimpat. I wonder if anyone has had good results with that? I'm thinking it must be a fairly new medicine as our pharmacist had to order it - he had never had it prescribed before and our local Walgreens didn't have it either. Thanks for any feedback regarding the Vimpat.
 
Welcome Tweeny :)

Our daughter is 15 and has epilepsy. At first she was very worried about having a seizure at school, however as time (about a month) has moved on she is becoming less and less worried. Its still in the back of her mind but its not blinding her. What has really helped her is speaking out about it. She doesnt hide the fact she has epilespy, she uses it to educate others around her. "hey I have epilepsy. If I have a seizure this what you do and dont do" She also has several 'seizure bags' we have one in each car, and they have one for her at school. In it is a change of clothes, flushable wet wipes and a blanket. If she has a seizure someone gets her bag, pulls out the blanket to put over her so that if she become incontinent people dont see, also gives her something to wrap up in when its over and shes on the way to the bathroom to change if needed.

In time, hopefully your daughter has less anxiety about having a seizure in public. We've told Kait "would you rather have one by yourself and get hurt, or have people around to help"? She would rather people be around to help.

Im sorry I dont know anything about Vimpat. Kait takes Lamictal, she is still ramping up to the full dose however with little to no side effects that we have noticed. I hope your daughter handles the new med with no side effects and that it controls her seizures.
 
Hi Tweeny21, welcome to CWE!

If your daughter will still be on the Keppra, you might suggest she take a B6 supplement -- it can help with the moodiness and anxiety that Keppra can cause.

Vimpat has been around for a few years, but is still relatively new. You might be interested in these threads:
http://www.coping-with-epilepsy.com/forums/f23/has-anyone-else-taken-vimpat-urgh-9720/
http://www.coping-with-epilepsy.com...on-sleep-really-vivid-dreams-nightmares-9690/
http://www.coping-with-epilepsy.com/forums/f20/looking-info-vimpat-12613/
http://www.coping-with-epilepsy.com/forums/f36/vimpat-new-aed-has-anybody-else-tried-6894/
http://www.coping-with-epilepsy.com/forums/f20/vimpat-sickness-10810/
http://www.coping-with-epilepsy.com/forums/f20/vimpat-12043/
http://www.coping-with-epilepsy.com/forums/f20/keppra-vimpat-easy-bruising-14644/
http://www.coping-with-epilepsy.com/forums/f23/vimpat-fyi-13093/

Best,
Nakamova
 
Hi,sorry to hear about your daughter.I was diagnosed 2 yrs ago at 33yrs.
I am being weened off keppra at the moment.I was taking 1800mg/day but my moodiness was out of control and I knew I was being unreasonable to my poor husband and two kids but I just couldn't help it.I was also extremely tired (sometimes sleeping for 15 hrs a day) so your daughter may notice that aswell.
I also had terrible anxiety,I was more worried about the loss of control of my bowels or bladder than the actual seizure.I think I will always have that anxiety but I think the keppra made it worse.
A lot of the initial side effects-itchiness,irritable bowel,insomnia,headaches,dizziness eventually went away.
I hope it works out for her.some people get very few side effects -I seem to get every one under the sun :(
 
Thanks so much! The bag is a great idea. She is good about telling people about her epilipsy. I think it also helps her to accept it by telling people about it. Her boyfriend has been very supportive, which is also comforting to her.
 
Good to know about the B6. I heard (quite by accident) that Folic Acid may be helpful for seizures as well. I need to do more research on that, but have alerted my daughter to ask her doctor about that one.
 
vimpat personal experience didn't go well for me might for her not sure but glad she has people around to support and help if needed.but the anxiety of having one in public i was 16 in h.s. when i was diagnosed and hid it from people and would go in restrooms and seize.wasnt good at accepting it she's already a step ahead of me i finally realized it aint goin anywhere.
 
My daughter does have side effects from Keppra - tiredness, off balance. They are weaning her off of the Keppra, however, and are hoping the Vimpat alone will do the trick. She does get emotional easily lately. Maybe that's a side effect as well? But it's all so new to her (and us) that it's also understandable. My younger daughter is getting nervous that she will develop it. She had a seziure when she was 18 months old - unexplained. She hasn't had another since. She rides and jumps horses so she said to me that she worries if she develops epilipsy she'll have to give up her horses! Apparently my husband had seizures as an infant that went away by the time he was four or five.
 
Well, she acts tougher than she really is. I know it's been difficult to accept, but she does try to remind herself that it could always be worse. Did Vimpat not control your seizures -- ir was it the side effects that made it not work for you?
 
SIDE EFFECTS were way too bad for me im on a lot of other aeds as well though but not as bad since i quit that and made me suicidle didnt like that feeling.and the stuff with your daughter she naturally going to feel like that and if his went awawy as a infant and a lot of people have only one seizure and dont even know it.
 
You must log in or register to reply here.
Back
Top Bottom