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Take control of your epilepsy and seizures. Seizure management has never been easier.
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hi everybody,i`ve been struggling with epilepsy for 24 yrs now(i`m 31)...u can`t imagine how many doctors i`ve seen & how many prescription i`ve tried but nothing is working!!!!i had epilepsy since i was 7 but i was 1st diagnosed with petitmal at the age of 13 but i didn`t recieve the proper treatment until i was 18 (depakine+zarontin)they worked well together & i was fit free for years,so igradualy stopped depakine & i got pregnant on zarontin.....and problems started since then i began experiencing the most painful kind of attacks:convulsions-falling attacks-eye squinting.........and it became worse after delivery,,,this was 5 yrs ago,i tried every possible AED (LAMICTAL,TOPAMAX,KEPRA,DILANTIN........)& TRIED DOZENS OF COMBINATIONS.....BUT NOTHING`S WORKING....i even went through status epilepticus twice....i`m in adeep mess my life is falling apart ,i have a daughter & i`m having fits on daily bases .......my MRI is normal but my EEGS & MY VIDEO EEG are NOT......all nuerologists agreed that my case is rare & very resistant to drugs......please please if anybody experienced similar conditions just tell me anything.....thanks alot
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Name: Women and epilepsy
Since: Apr 10, 2008
About the Group:
Women can deal with epilepsy in a different aspect than men. When it comes to the start of puberty to when menopase occurs. There are a numerous amount of effects that women can have due to hormones and becaus of childbearing. Due to this I wanted to start a group to talk and get to know other people with the same seizure and if when it comes to certian subjects you can get a second opinion. Overall one will be able to converse and find out information that can help medically and socially.
Recent Comments on this Discussion
To: sorforina atina
Your situation sounds like that of my daughter who is now 33. You've been on many of the meds that she's been on, such as Depekene and Zarontin. It never controlled her seizures, though. Her seizures were almost incessant - they used to last almost all night, and of course she has retardation as a result. After lots and lots of combinations, Felbatol, Depekote and Keppra established a modicum of control, and reduced the number of seizures, but she still had lots of really bad seizures - and usually 4 to 8 a day. I'm telling you, her situation was really bad. Finally, in August of 2004, we had a vagus nerve stimulator (VNS) implanted. A year after implantation and after ratcheting up the power in a number of deliberate steps to 2.25 mchz, and after we used the magnet liberally, she became seizure free. It is an absolute miracle. She's still on the meds, but now she's gaining mentally and coming on. Maybe you should try the VNS.
thank u sooooo much for this helpful information...i really need to know where did ur daughter do the VNS, just tell me the name of the doctor , the hospital & in which country...cause we don`t do it in egypt where i live. and how much did it cost.......thanks again u have no idea how much hope u gave me by ur message:)
I also know how you feel. It's very difficult to say anything other than you WILL get through this. I have JME, I was diagnosed at 9 years old, and I have been on carbmazepine, then lamotrigine, and now I am stable (fingers-crossed) on Keppra and Rivotril twice daily. I know what it feels like to be out of control, but it will get better. What I found was that after a certain period of time, say 5-10 years, my epilepsy became resistant to certain medication too. Didn't matter what doses they used, moving up and down, it just wasn't working.
Any idea as to whether or not it is hormone related? I know you have probably researched this outlet, but I have read articles where estrogen levels were affecting epilepsy control and they administered a progestrogen only birth control pill in combination with AED's. It has worked for a few women-it could be the key.
Hope this can be of use. Keep your chin up. The day is always darkest before the dawn.
Laura x
I do understand how you feel. I too have been going through the same thing. My doctors have thrown their hands up in the air and said "I dont know". I went to the University of Michigan and they sent me home after a day and I was supposed to stay ten days. I would say just pray and often. I turned to GOD and my family doctor found two drugs that work together, but I still have seizures, but not as bad. I take neurontin and Lyrica. I hope I helped a little. You will be in my prayers.
Cori
have you tried keppra, I just began it myself 5 days ago after spending a week in the hospital having a video eeg. I had been on many others too along with tegretol for my full 25 years. But it obviously stopped working for me. Keppra so far is working and not one seizure, keep your fingers crossed for me. I feel dizzy but really good for once in a very long long time. Let me know. Tina
hi tina how are u? i`ve tried keppra but unfortanately it didn`t work for me,,,,,,but i`m so happy that it`s working for u:) so may god be with u & let u get through this rough time:)