I know what you mean, Tim, about feeling like a guinea pig (I've tried more AEDs than I can count). I know that AEDs and/or surgery doesn't work for everyone. I guess my main point, Tim, is to accept the cards you have been dealt, but at the same time, not give up hope.
Who knows what tomorrow brings?
Who knows what tomorrow brings?
This world is always changing.
There is so much to do,
And so little time.
We are blinded by constant troubles.
The Glory of God is everywhere,
If we would just open our eyes.
Remember that God is in control.
He has a purpose for every problem.
Tristin
--- On Tue, 7/21/09, TIMOTHY BALDWIN <tbb1@prodigy.
From: TIMOTHY BALDWIN <tbb1@prodigy.
Subject: Re: [epilepsy] newbie
To: epilepsy@yahoogroup
Date: Tuesday, July 21, 2009, 5:15 PM
Hi Tristin,
I know you may be speaking to someone else, but; in my case nothing has come together.. Not any medicine, left temporal lobotomy in '96 which was unsuccessful in reducing seizures, but it did produce verbal-memory loss. Medicines over the 35 years that I've been trying to find a therapeutic mixture or one have only made me feel like a Guinea pig on drugs.
Tim B. < tbb1@prodigy. net >
-- On Tue, 7/21/09, Tristin Seagraves <tristinspike26@ yahoo.com> wrote:
From: Tristin Seagraves <tristinspike26@ yahoo.com>
Subject: Re: [epilepsy] newbie
To: epilepsy@yahoogroup s.com
Date: Tuesday, July 21, 2009, 3:43 PM
Hi Rachel,
What kind of seizures is your husband having? Does the neurologist know the part of the brain that the seizures are coming from?
I'm 25 and have had temporal lobe epilepsy all my life. There is no known cause for my epilepsy. It's just something I had to accept. I had a left temporal lobectomy last November, and I've been seizure-free since (8 months). I'm 25 years old and just got my driver's license June 18. Seizures can get worse over time... mine did. Medications weren't controlling my seizures. Last year I was having about 20 seizures per month.
Is Dilantin the only AED that your husband has tried? There are many different kinds of AEDs. Your husband may have to go through numerous medications before he finds one to work for him.
The most important thing for you to do, Rachel, is NOT PANIC! If and when your husband has a seizure, okay. He had a seizure. You have to try not to make this more than it is. Your life and family is kind of like a puzzle, and epilepsy is just a piece of that puzzle. Right now it may be hard to make epilepsy fit into your life. It may take some time, but, like a puzzle, eventually things start to come together. In the end, the picture is beautiful. Don' t let that one piece that doesn't quite fit yet control you and your family.
Tristin :)
--- On Tue, 7/21/09, Rachel <Tesh1812@aol. com> wrote:
From: Rachel <Tesh1812@aol. com>
Subject: [epilepsy] newbie
To: epilepsy@yahoogroup s.com
Date: Tuesday, July 21, 2009, 8:19 AM
Hello,
My name is Rachel and I am in desperate need of some help. My husband is
46 years old and had his first seizure on jan 31,2009. Apparently to
have a seizure out of the blue at this age is not common? the thought
was that even though he had 3 that day....that it would be an isolated
event and that he would not have any more. The typical tests (eeg's,cat
scans,sleep studies,and mri's) have all been performed and they have not
revealed anything except a sleep apnea. He started wearing the mask to
sleep in april and had another seizure in May- so much for sleep
deprived being the reason. He is on medication Dilantin- which makes him
feel like crap. I know that in the scheme of things his situation is
not " that bad" he has only had 4 seizures in 6 months (3 of which were
on the 1st day) but my question is.....if they do not know what is
causing them....how do they know that they won't get worse? We live in
Mass and the law here is that he cannot drive for 6 months after his
last seizure..... another question I have is- Is anyone able to drive? I
know that even though the law says that it is 6 months from the last
seizure..... his neuro will have the last say on whether or not he should
be driving. I feel like this whole situation is so out of my
control....overall his health is good.....but when I drop him off at
work in the morning I find myself clinging to my cell phone- just in
case something happens at work and they need to call me....I find myself
waking up through the night whenever he moves to much.......I panic when
he stays to long in the jacuzzi with the door shut......will any of this
ever get easier? does this somehow become so routine for me that I will
stop worrying? I am actually not a worry wart and do have some
experience with seizures... My son had febrile seizures when he was a
baby...but I felt like I had control over the situation... .i knew when
they could happen. I knew what to look for and what to do when his temp
started to rise. as long as I could keep his temp under control he
wouldn't have one. With my husband ...there is nothing I can do .... I
have a great family and group of friends that are here for me if I need
them, but none of them have ever had to deal with this either so they
don't know what to do or say. I am looking forward to being able to
learn from all of you and your experiences.
thanks for listening
Rachel
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