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Does a seizure disorder = epilepsy?
Sat, 03/29/2008 - 00:15Greetings, all!
Six weeks ago I was diagnosed with "idiopathic seizure disorder." At my follow up appointment today I asked my neuro for my diagonsis and he said the same thing. He doesn't seem to know what kind of seizures I am having. The EEG showed seizure activity in various parts of the brain. The only thing we seem to know for sure is that I am NOT having grand mal seizures.
So, does having a seizure disorder = epilepsy? Is there a magic moment when a seizure disorder converts to epilepsy? I am not eager for a label, but I just would like to know what to call the stuff happening to me. My seizures change and seem to cover both the complex and simple partial seizure arena.
I am currently on Keppra 3000 mg and Dilantin 300 mg a day and I still have seizures. I have started the long process of starting Lamictal and in 8 weeks he will start weaning me off the Dilantin.
Anyone else have a seizure disorder? Any advice to long and slow process of starting and weaning meds. The side effects of my Keppra/Dilantin cocktail is driving me crazy. I can't tell you how excited I am to add another med to the mix. (Can you hear my cyber-voice dripping with sarcasm?)
Any advice or comments welcome. I've been reading everything I can about seizures, but I can't seem to find myself in any article or textbook. If my EEG wasn't abnormal I would think it was all in my head. (pun intended)
Thanks in advance!!
~christy
Comments
Re: Does a seizure disorder = epilepsy?
Submitted by banffgirl on Mon, 2008-03-31 - 01:37
anytime your siezures are continous, the er is the place to go, next time dont wait 4 hrs though, anytime its 30 min and still going on go to the er. thats the medical point the doctors say to go. as for in the er, iv dilatin or there is a drug which is in the dilatin family actually for iv use to stop siezures in the er. but that is for emergency use. it will work short term. but if i take dilatin it doesnt do anything. klonopin is used for siezures and anxiety. i take a small dose of that for anxiety now but it searted out for siezures last fall.
i am in agreement with the poster above, forgot her name, terrible memory! epitologists who are neuros who specialize in epilepsy are the best docs to go too. also i stopped going to one because he was always in and out of the room so quick i had to rush thru my list and couldnt remember the answers. now i have a great doc who after 5 yrs i am finally getting more cntrol over my siezures, still not controled but much better!!!! i thank God for delivering me to this doc, he spends so much time with me at each office visit till he knows i am clear on everything. he doesnt book lots of patients over each other so he can. he also teaches about epilepsy at the main medical university here. as of your clear eeg, that 20 mins out of 24hrs thats why i called it a snapshot in what i wrote up ablove.
God Bless,
banffgirl
life is fragile, handle with prayer.
anytime your siezures are continous, the er is the place to go, next time dont wait 4 hrs though, anytime its 30 min and still going on go to the er. thats the medical point the doctors say to go. as for in the er, iv dilatin or there is a drug which is in the dilatin family actually for iv use to stop siezures in the er. but that is for emergency use. it will work short term. but if i take dilatin it doesnt do anything. klonopin is used for siezures and anxiety. i take a small dose of that for anxiety now but it searted out for siezures last fall.
i am in agreement with the poster above, forgot her name, terrible memory! epitologists who are neuros who specialize in epilepsy are the best docs to go too. also i stopped going to one because he was always in and out of the room so quick i had to rush thru my list and couldnt remember the answers. now i have a great doc who after 5 yrs i am finally getting more cntrol over my siezures, still not controled but much better!!!! i thank God for delivering me to this doc, he spends so much time with me at each office visit till he knows i am clear on everything. he doesnt book lots of patients over each other so he can. he also teaches about epilepsy at the main medical university here. as of your clear eeg, that 20 mins out of 24hrs thats why i called it a snapshot in what i wrote up ablove.
God Bless,
banffgirl
life is fragile, handle with prayer.
Re: Does a seizure disorder = epilepsy?
Submitted by accleveland on Mon, 2009-01-26 - 13:22
Any advise or thoughts would be appreciated.
I can relate. my husband is 34. never had a seizure in his life. Christmas Day 2007 he had a grand mal seizure and was taken by ambulance he spent 4 days in hospital while they did multiple tests. only one that came back abnormal was eeg showed abnormal brain waves. The doctor he seen was really rude and insentive only would give him depokote and told him he had epilepsy. We did multiple eeg and increased medicine everytime and no better eeg the next and he had very bad mood swings on medicine. so we went to another neurologist and they put him on keppra thought was working but he had another grand mal seizure on Halloween 2008 so doctor increased medincine he now talking 1000 mg tablets three times a day. He had another seizure saturday. We knew it was coming on he started twitching and shaking and he gets really bad indigestion right before. belchs really loud and deep. he took another keppra like doc said it did not stop symptoms two hours later he had a seizure. we see doctor on thursday. hope he can switch his medicine to somthing that will work. THis doctor said he had a seizure disorder but no reasoning on what causes it. Thinks he was born with it . Why did it wait 33 years before a seizure. None of this makes any sense to me. my husband has always been so healthy. He was in the military and he got routine checkups. never was sick. He is not overweight very active. I feel like my life is falling apart my daughter has hearing aids at 8 yrs old, my son was born with problems and has had 5 surgeries and has to have daily eniemas he is three . and now this with my husband. why me. i wish we could get this under control i have the image of the seizures all the time. its devasting for me to watch him suffering. and the kids get so upset also.
Any advise or thoughts would be appreciated.