topomax and Carbamazepine

Sandy - posted on 04/15/2011

Angela ... you may also want to look into the VNS (Vagus Nerve Stimulator). It helps to stops seizures before they start. It's implanted in the chest with wires going to the vagus nerve. The VNS cycles constantly. Joey is on 30 seconds and off 5 minutes but he wears a magnet that can turn the VNS on instantly when it's swiped over the VNS. Joey has been a guinea pig but some things have been great for him.
Sandy Lora

Sandy - posted on 04/15/2011

From one mom to another ... please try giving her Lecithin which is a mineral/vitamin. I started it 8 1/2 months ago and he was seizure free for 7 1/2 months. He had a 3 second seizure 3 days ago but it was over just as fast as it began. Not bad odds for a kid who was seizing several times a day. I get capsule form but I heard something about another form of it. You can open the capsule and put it in a spoon, maybe with ice cream or yogurt. My son has been on and off drugs (good and horrible ones) since he was 9 months old. He's 12 years old now. Due to his left brain being taken out and stroking in right frontal lobe .... he can be impulsive, aggressive and especially non-compliant. Most of this is due to lack of frontal lobe and we are trying to teach his right brain to 'behave'. Since starting him on Lecithin ... I have taken him OFF of 3/4 of his medicine!!! I've been dealing with this for over 10 years. Have you tried Trileptal? It's been a good drug for Joey. He had drop seizures, absence seizures, petit mal, and whatever else. Beware of Keppra and Zonagran because they have aggressive and violent issues with them.

I know what you are going through and it's a pain but all we can do it keep trying. Give the Lecithin a try for a couple of months and see if you get positive results. It takes time to get into their system. Go for it!!
Sandy Lora

Meagan - posted on 06/02/2010

My daughter is 9 and was diagnosed 2 years ago. She has tried Dilantin which didn't work for her at all. She now has been taking Carbamazepine now for over a year. I will admit that the first few months were hard, especially for her being in school, because she was tired. So we had to let her sleep a lot and just keep things as simple as we could for her. Now that her body is weaned on to them things are great. She hasn't had a seizure in months, is always full of energy, and is just starting to get her life back. We held her back and she is doing Grade 3 again but everything has been worth it.

I hope that you can figure things out for your entire family. It is so difficult when you are controlled by the disease. Hopefully you guys can figure things out so that you can control the disease! Keep your head up and keep pushing forward...there is light at the end of the tunnel!

Sandy - posted on 05/28/2010

Hi Deana,
Switching doctors is the best thing to do when they won't do what is best for your child. Trileptal has been a pretty good drug for Joey. You may even like Vigabatrin. New one he's taking is Vimpat and I'm still not sure if it's helping or not, yet. Gotta get it on board and wait to see what happens. Good luck and keep pushing to find the right mix for your daughter.
God Bless,
Sandy Lora

Deana - posted on 05/28/2010

I totally agree with you there sometimes the side effects seem worse than the seizures! My daughter is on Depakote and Valproic Acid (Zarontin) and she has some terrible side effects, insomnia, fatigure, irritability, confused, hard time concentrating, changed her hair from thin/straight to frizzy/curly (I can deal with that though). I'm pleading with our dr. to try something else for her but he doesn't want to budge, so I'm switching doctors and getting a second ( and a third opinion) if I have to.

Sandy - posted on 05/18/2010

Some of the worst drugs have been Keppra, Zonagran and Banzel. The side effects are violent and abusive towards whoever is around. Trileptal (oxcarbazapine) has been a pretty good drug for over 10 years. We just added Vimpat a few months ago. His seizures have never been under good control though and most likely never will but I keep trying different drugs and doses. I'm not sure about Clobozam but it may be the once causing the side effects. It's trial and error.
God Bless,
Sandy Lora

Angela - posted on 05/14/2010

Thanks everyone for your posts. Very much appreciated.

Eloise has been on topomax for a year now. She cannot sweat and we found the heatwaves we had over Christmas really hard to manage. She would get over heated and have seizures from it. we were pretty much housebound for the summer. It looks like it is starting to cause kidney issues with her. She is almost 5 and has already had 2 bouts of agonizing kidney pain. She only weighs 15kg too which is very skinny - has always been skinny though. We pretty much have to shovel food in her because she eats so little. I will look into the heart issues with the drug.

we are just starting nitrazepam and the side effects I have read from that are disastrous. I so hope she doesn't experience them.

Julie - posted on 05/11/2010

I noticed that one person mentioned the side effect of weight loss with Topamax. I don't know if you started it yet, but read the side effects. Decreased sweating is one of them so you need to make sure your child stays hydrated, especially as the weather gets hotter. I lost 60 lbs on topamax - it's an off label use. It also possibly linked to heart arrythmias. There is some discussions about it on the epilepsyfoundation.org research junkies site. Topamax is an ingredient of another weight loss drug which is causing the heart problems.

Yvonne - posted on 04/05/2010

My son Tyrone is 18years old now, he has a brain condition called ACC his seizures started when he was 11years old he was started on Sodium valproate this worked for a while but the side affects were mainly tiredness lethargy and tremors (you could see it with his handwriting) he was then started on Topamax along side the SV, this caused even worse tiredness and lack of concentration the he was eventually weaned off this and started on Lamotrigine which I must admit did work for a while but once again drowsiness weight gain (with all) and tiredness. He was then started on Keppra 3 years ago (after having 15 seizures in one day) the best one to date - no side affects at all he is more alert, no tremors basically he is 'with it' but his seizures started again this February and was started on Carbamazepine BIG MISTAKE.... he had severe headaches, no appetite for over 2 weeks! severe lethargy he spent 22 hours in bed asleep developed a temperature, took him to see an out of hours Doctor who said it was a virus! continued on the Carbamazepine then at the end of 3 weeks he developed a rash which looked like measles the following day he was covered with what i can only describe as sores, had swollen eyes and lips. Took him back to the doctors who said he had a severe allergic reaction to something i did not think it could be the Carbamazepine because this was nearly 4 weeks after starting it, he ended up in hospital for 3 days! He is still on the Keppra thank God! and if I had my own way would not change it for anything. Different people react differently to each drug but I would not want anyone to go through what my son went through whilst being on Carbamazepine....think very carefully.

Aileen - posted on 03/30/2010

ask her doctor if the epilepsy is in the part of the brain that controls behaviour.....as for carbamazepine my 12year old son was put on it when he was 6 because his behaviour was atrocious on valproate and he now takes 800mg per day...it didnt change the behaviour but it reduced the seizures. my nine year old son has just been changed from valproate to carbamazepine for the same reason his dosage is a lot lower than the other one but it hasnt changed the behaviours. if the seizures are controlled on the medications start investigating the behaviours. good luck and i hope this helps

Angela - posted on 03/27/2010

Hi my daughter has had seizures since she was 2 yrs old she is now 16yrs old will be 17 in July she has been on so many different kinds of seizure meds since she was 2yrs old she has surgery when she was 4 to remove fluid from her brain from where she had bleediong on the brain at 2 days old .Then in 2003 she had vagliar nerve stinalator put in and and she still contin ue to have seizures and she was on keppra annd lamictal and they kept raising the keppra and she became toxic on it so they had too ween her off of it. the put her on to new meds that are fairly new they have really helped he in many ways . They are called Zoneogran and Benzle .The Benzle is in the same field as Keppra but less side affect. And the Feb of this yr we had to have her Vns replace and now she has not had any seizures at all for 8wks now. So may be u may ask the Dr, s about those 2 meds . May God be with u all. He is the one who can take controle of them he has did it with my daughter . I give hime all the credit.

Jennifer - posted on 03/26/2010

Hi, I recently found out that combativeness and aggression are the main side effects of Keppra. My daughter's doctor has prescribed vitamin B6 to address that. I have found that extra B vitamins really help steady my moods when pre-menstrual or experiencing depression so there's clearly a relationship there. She's about to start Keppra so we'll see.

Jennifer - posted on 03/26/2010

For what it's worth I think it may be wasting your and your precious daughters' time to re-try a drug that has had negative side effects previously. Funny how doctors always want to give it another go! My daughter tried Clobazam last year - it interfered with word retrieval and also made her withdrawn - speaking became so hard she sometimes stopped trying :-( It also interfered with the Lamictal she takes to control her atypical absences. She's on Topamax now, which has given more control over her seizures but still at least two or more days of seizures a month. Also it's an appetite suppressant so my dainty little 9 year old has lost weight - she's tiny and I feel like crap for giving it to her. We've just received funding approval for Keppra - the next stop on the roundabout! Apparantly Keppra can have behavioural side effects, which we already experienced with Epilim. Sigh - wouldn't wish it on your worst enemy!

Kimberley - posted on 03/26/2010

Hi my daughter is 2 and has just been diagnosed the doc has put her on Teva-Clobazam I have never heard of this drug before if anyone can give me some ideas how it is that would be great Trinity has mild seizures but I am also epeleptic so they are concered she starts her meds tommorw

Stephanie - posted on 03/26/2010

my daughter is on carbamazepine and she is fourteen. the main side effect for her is drowsiness. she has been on it since she was three, and that was after they took her off of dilantin which was a horrible drug for her. she wound up with dilantin toxicity and the side effects were not good. the carbamazepine has worked great

Julie - posted on 03/26/2010

My 4 year old is on keppra and it seems to be working. We found out he had epilepsy almost 2 months ago and he hasn't had anymore seizures. Although.. his behaviour has gotten really bad. He has an appointment next month but I am thinking it might be the Keppra as that is the only thing that has changed. He doesn't listen, talks back, throws fits. I don't know what to do about it. I asked his school and they said he wasn't having any problems. So I don't know if he is just saving it for us or if its actually the meds.

EIROCTONYA - posted on 03/25/2010

My daughter is 7 and i was feeling the same way about her when she was taking so many at a time so what i would do is just get her on the topomax and wene her off the others so many at a time is causing so many side effects, the topomax helped tatyanna alot and thats all she is on right now and her seizures arent as frquent just when shes in diffrent moods (sleepy,startled )etc...im sorry you gotta go through this but thank god we have this to give helpful advice and share stories.....

Tina - posted on 03/25/2010

Topomax has worked very well for our son who has Dravet Syndrome. It effects speech and some people refer to it as stupidmax. Every child is different, I recently discovered a herb Bacopa and this seems to prevent the bad side effects. Keppra makes alot of kids mean, and more agressive. Dr's like to add more drugs, thats what they do best, I agree with you sometimes I wonder if drugs and thier side effects are worse then the seizures and I know some of the drugs make the seizures worse.

Christine - posted on 03/24/2010

I am on Caramazepine and it works just great on my seizues, now as for a young child i am not so sure foe each person is different. I have gone through many seizue medications. It does take time until you find the right medication for her, it is sad to say. I have use topomax and I did not like the way I was feeling. Yes sometimes it feels likeit wouldbe better to deal with the seizures. The side affects can really be bad, but it is all trail and error. I am sorry I could not give you better information.
May God Bless you and your's. I will keep you in my prayers.

Angela - posted on 03/19/2010

Hi Amanda, thanks for your advice. We tried Keppra a few drugs ago.It made her really aggressive so we had to take her off it and unfortunately it didn't help with the seizures. We are unfortunately on a drug roundabout trying to find the right one.

Amanda - posted on 03/18/2010

YOU SHOULD ASK THE DOCTORS TOO PUT HER ON THE DRUG KEPPRA. MY DAUGHTER WAS ON CARBAMAZEPINE..WHEN SHE WAS A BABY...SHE STILL HAD SEIZURES..SO THEY ADDED THE DRUG KEPPRA...BEING ON BOTH 4 A WHILE HELPED....SO THEY WEANED HER OFF THE CARBAMAZEPINE...AND KEPT HER ON KEPPRA...SHE IS NOW 3YRS.OLD AND HAS SEIZURES MAYB TWICE A YR....KEPPRA HAS NO SIDE EFFECTS AND IT WORKS LIKE A CHARM...