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newbie with some questions...

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Epilepsy
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LadyTonx
New Member
Joined : Dec 2010
Posts : 3
Posted 12/28/2010 9:37 AM (GMT -8)
Hello all,

I started having partial seizures in November of 2008 that have progressed to Clonic Tonic now. I had one the day after Christmas, and it was the worst one ever. When the seizures first started I went to a neurologist who did some tests (MRI, EEG, Bloodwork), and when they didn't show anything, he totally blew me off. Didn't try to figure out if anything else could be causing the problems. I now have cluster seizures, the one the other day was six within about 2 hours. My family freaked out and called an ambulance. I have an appointment today for a sleep deprived eeg, and an appointment with a new neurologist, but I'm not too proud to say I'm scared to death. I'm a chemistry professor at the local university. I have had a seizure in the middle of class, in front of my students. I'm on 2000 mg of Depakote, and I'm more than a little concerned about the side effects of that. If anyone out there has any words of advice, or even just to say that they've been where I am, I would really appreciate it.

Thanks,
Rebecca
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RanMan
Veteran Member
Joined : Feb 2003
Posts : 671
Posted 12/28/2010 10:18 AM (GMT -8)
Hi Rebecca,

I've had epilepsy (seizure disorder) for 31 years.

I'm not a professional in this field but I'm speaking from experience and pieces of info. I've gathered along the way.

1) -  After a stressful period (Christmas, Boxing day etc) your natural defenses are now "restimg" so the seizure activity can get through and cause an aura or seizure.

It could also be from low blood sugar.

2) - a simple MRI or EEG my show negative seizure activity (very common) because the seizure activity is "located" deep in the brain cortex and therefore it isn't strong enough to show on the test.

I've heard from lots of ppl on 4 different epilepsy forums with the same concern.

3) - 24 hour sleep study is a good idea, ie: if you sleep on your back, your airway could be partially restricted (snoring, weight gain) and causing lack of oxygen to the brain. This may be a form of "Sleep Apnea". 

(you may be able to tell if you have sleep apnea, when you wake up in the morning, you feel lethargic, miserable, tire, lack of energy, sore throat, headache)

4) - Re: side effects from Depakote, Since I'm on another med, I can't comment on that but I have heard that it causes short term memory loss.

Randy

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LadyTonx
New Member
Joined : Dec 2010
Posts : 3
Posted 12/28/2010 12:01 PM (GMT -8)
Thanks Randy,

That really helped. I guess I'm just scared. It's never been as bad as it was the other day. Thanks for the insight, and I already feel better that most regular MRI's and EEG's don't show anything. The first Neurologist made me feel like I must be crazy.

Rebecca
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stoneychild
New Member
Joined : Dec 2010
Posts : 3
Posted 12/28/2010 3:01 PM (GMT -8)
Hi Newbie! It's normal to feel scared. I have had epilepsy since 1964 and everytime I have had a tonic-clonic seizure, I wake to the 'no, no not again!' My seizure pattern was controlled till meno-pause when the grand mals returned and in full force. Finally my doc and I agreed to surgery. Today at 60 I'm driving (first time in history) almost for 1 year now. I took depokote a long time ago and it wasn't the med for me so we tried lots of others. I'm difficult to control, but finally found Tegretol and Keppra seem to work for me.

You can feel afraid, and have every right to do so, But don't let the Fear Control You. Be the master of your universe. Get to know your Doctor as well as a trusted pharmacist, who can guide you through the meds issue. If your fear leads to depression (before it does) see a psychologist. Let your neurologist give you help in finding one.

Best of luck, and stay well.

ps- be really sleep deprived for your test- the results become easier to read for the tech. 

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LadyTonx
New Member
Joined : Dec 2010
Posts : 3
Posted 12/28/2010 3:34 PM (GMT -8)
I haven't even seen my new neurologist yet. I guess what I'm really scared about right now is the stupid eeg in the first place. That last was the worst seizure I have ever had. It was like being locked in a dark room with nothing but pain. I have spoken to the idiot technician who will be responsible for administering the test, and am afraid that if I do start to seize, she wont have a clue what to do. The seizures are coming in clusters of five and six, and were only stopped in the hospital when they gave me ativan. I want to make sure my doctor gets all of the information he needs so he can give me a good diagnosis, but if it means having another one of those, and no new information, I'm not sure it's worth it. I have a pretty high pain tolerances, but this scares me to death...

Rebecca
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litome
New Member
Joined : Feb 2011
Posts : 10
Posted 2/13/2011 1:20 PM (GMT -8)
hi

i have a question does the medication eplim have a side effect of thickening the blood my neurologist hasnt told me much about the medication so im not to sure but ive been told that thats what epilm is doing to my blood and im not to sure if i believe them entirely

savi
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