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Old 02-15-2014, 02:48 PM #21
Porkette Porkette is offline
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Join Date: Aug 2006
Location: NY
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15 yr Member
Porkette Porkette is offline
Senior Member
 
Join Date: Aug 2006
Location: NY
Posts: 1,200
15 yr Member
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Hi Synnove,

I have bilateral lesions on the right and left temporal lobe of my brain along with the frontal lobe of my brain. I had the surgery done to reduce my sz. but I've had so many sz. over the yrs. even after the surgery was done that it caused more brain damage but I have gotten used to it after living with epilepsy for 42 yrs. now.
I keep a calendar and write down what time I have a sz. along with the type of sz. I have once in awhile I will write down if I'm sick with a cold or virus along with any low pressure in the weather. It has been proven that when a person gets sick and when there's a low pressure in the weather this can often trigger sz. for a person. By keeping track of my sz. on a calendar my Epileptologist found a pattern in my sz. and noted that I also have more sz. in the fall and winter compared to spring and summer when I have fewer sz. and this is do to the amount of serotonin in the air which I never knew about until a couple of yrs. ago.
When I have a sz. sometimes I will get a simple partial (aura) sz. where I will start to see colors in my eyes and get a nervous feeling in my stomach the moment that happens I tighten up all the muscles in my body and make my hands into tight fists, if I do this in time it will stop the sz.
I live a normal everyday life, I can't drive do to state law but I try to keep busy and I work full time so it's nice when the weekend comes I can take it easy and relax after the laundry and housework is done. I take my sz. meds twice a day once in the morning with breakfast and then again at 5 pm.
Years ago I was on Depakote and it worked great for me but then my body became immune to the drug and it also caused me to become anorexic where I would eat my 3 meals a day along with snacks but the drug caused me to lose to much weight I lost 70 lbs. in 4 months then the drug started to eat up the blood platlets which is very rare so I had to go off the drug.
I have a feeling you may be having myoclonic sz. meaning the person has sz. when they first go to bed and when they wake up in the morning. Last spring I had to have a sleep study done and My Epileptologist found out I was having sz. in my sleep 1-2 hrs. before I would get up in the morning but since I have been on vimpat that has stopped that form of sz. You may want to ask the Epileptologist to do a sleep study on you and it's up to you but I would stick to seeing an Epileptologist because they not only deal with epilepsy they know all about other neurology disorders and problems and can treat you so you would only have to see one Dr. instead of 2 different Drs. but that is up to you.
I wish you the best of luck and May God Bless You,
Sue
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Synnove (02-15-2014)

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Old 02-15-2014, 09:45 PM #22
Synnove Synnove is offline
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Join Date: Jan 2013
Location: Florida
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10 yr Member
Synnove Synnove is offline
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Porkette
Yes, I too write a journal, sort of. I have to keep a journal of all the different symptoms that I have from day to day. When I first told the neurologist about theese night episodes, he asked me to take notes of it, and I have.
You mentioned you had had the myoclonic seizures at night.
I have seen a pattern in my episodes as far as time goes. They usually happen around 0100 at night, and the often again at around 0400. Then sometimes it comes as I wake up in the morning.
This is the strangest thing. When I finally get to see this eleptiologist, I hope to have a good brain scan. ( I have already had a lot, but not the SPECT scan.
I can not see why it is that I should have some sort of epilepsy, that nothing shows up during the day.
I am also wondering if it has something to do with effects from Lyrica.
But hopefully I can have it clarified.
My niece that has Epilepsy, she has done very well, has 4 kids, and is active working. I think she gets her drivers licence ok ed after certain time witout seizures. I do not know what medisine she is on.
All the best
Synnove
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