Hello, i'm new here. My boyfriend was
diagnosed with epilepsy 8 months ago
following the last of 3 major tonic-clonic
seisures over an 18 month period. The
cause of the seizures is still a mystery
to us as all of the tests were negative
for any abnormal activity (eeg, ecg, sleep
deprivation etc) the reason why I came on
here is because his biggest problem before
was the auras he was having. He was
getting 5 or 6 a day every day for weeks
at a time, then they would stop for a
couple of months, then they would return
etc. He is curreyntly on tegretol 600mg
a day and although the auras are less
frequent, they knacker him out so bad that
he can't go to work or operate at all, he
just has to sleep for 2 or 3 days
straight. Does anyone have any ideas if
the auras can be stopped completely ?
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purple333
Extremely EHEALTHy
Joined: 01 Dec 2003 Posts: 1420 Location: Sydney
Posted: 05-13-04 02:44am
By auras do you mean visual disturbances ?
Like the kind many people get ssociated
with migraines?? If not please explain.
If they are visual then they could be
associated with migraines &/or stress
as stress & migraines go hand in
hand.
Some other possibilities I would look into
are, allergies (the auras could be a
reaction), hormonal ups & downs &
yes men do have hormonal levels which can
vary, blood pressure (high/low). Did they
start after he went on any medication
(including vitamins etc) or do they occur
in relation to anything like sport,
exercise, driving (especially at night),
staff meeting at work any links at all to
anything or any group of things.
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RyGuy
New User, Becoming EHEALTHy
Joined: 06 May 2004 Posts: 19 Location: MD
Dealing With It All... Posted: 05-13-04 21:49pm
Tegretol and dilantin are the 2 epilepsy
drugs they almost always start you off
with. I'm on 300 mg of tegretol for
several years now. When I was first
diagnosed though, I was on 900: 600 in the
morning, and 300 at night. It pretty much
destroyed my life. At the point I became
aware of it, and the 3 week adjustment
period had ended, I contacted my doctor
and we began playing with dosages.
Ultimately, I got to 300 in the morning
and 300 at night. I found the slow
release stuff worked better and insist on
getting the brand name stuff rather than
generic.
By destroying my life, I mean that I got
vertigo so bad I could hardly stand up. I
was tired all the time, even after lots of
sleep. I spaced out a lot and had trouble
concentrating.
The lower dose helped but i, like your
boyfriend, had many auras each day... And
I just lived with it. I kept a diary once
and noted an average of 8 per day. My
auras were involuntary jaw, tongue, and
mouth spasms that made it sound like I was
stuttering when I talked. The auras would
last for minutes. Sometimes, my lungs
would spasm as well. I decided I would
rather cope with that than vertigo,
spaciness, and fatigue.
One day, after some things had happened,
my neurologist decided to try a new drug
in addition to the tegretol. So, we added
keppra. I hardly ever have those auras
now. I have different auras.
but, at the same time, my life is much
much better. I still have the odd
seizure, but it's a quality of life that
works for me. Since adding keppra, I have
reduced tegretol to only 300 mg per day in
the morning. I hope to stop taking
tegretol entirely if I can have about 6
months with no seizures at all.
Some suggestions... If your boyfriend has
been on tegretol longer than a several
months,
- try experimenting with different and
lower doses. My blood level is on the low
end. They look for 4 - 10 for treatment,
and i'm usually 5.1. At a lower dose, he
might have exactly the same level of
auras... And if that's the case, why
bother increasing the dose if it causes
such bad effects?
- once comfortable that things are not
out of control, talk about adding a new
drug with your doctor. Don't be shy to
contact him either.
- your doctor's goal is to make all the
auras go away and all the seizures go
away. But, our medical practices advocate
drugs... Which often cause side
effects... Which are then treated with
other drugs. I suggest a minimalist
approach and finding something that works
for him. Be patient with him. Epilepsy
is not fun and you should be patient with
yourself. To be honest, he should be
pursuing his own treatment, not you.
Lastly, some people have problems with
partial seizures in their sleep. Because
they are sleeping, they aren't aware and
don't remember, but it affects the overall
quality and quantity of sleep. My wife
notes that many times in my sleep, i'll
stop breathing and then startle myself
awake. Over time, this alone will tend to
make you tired and lead to massive 2 or 3
day crashes.
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Kimg
New User, Becoming EHEALTHy
Joined: 12 May 2004 Posts: 3 Location: England
Auras Posted: 05-14-04 22:49pm
Thanks to both of you for your replies, I
probably wasn't that helpful purple - his
auras are the deja-vu kind where he spins
out for about 5 mins, goes white and hot
and has to sit down. He says it actually
feels quite nice while it's happening (?)
but then can't remember words afterwards
or how to speak and can't remember
anything that happened just before it.
Also, like I said, he is so tired it's
like his body won't operate. They can
happen just about anytime of the day.
We've tried to keep a record of
circumstances, and cut things out to test
like caffeine, alcohol, late nights etc
but they vary so much it's impossible to
pinpoint a trigger! So that's the type
he has (medial lobe possibly ?) anyway, I
will definitely suggest all of your advice
so he is armed when he next goes to his
gp.
The reason I am getting info for him is
because he doesn't have internet access
and he is the only person he knows who has
seizures which I think is tough for him
sometimes as he feels quite isolated. I
also want to be as knowledgable as
possible so I am in a position to care for
him if he needs it.
Funny you should mention the sleeping
thing, sometimes he will suddenly jolt
himself awake and it panics me a bit as I
was there when he had his last big
seizure, so I always seem to be on guard
now. The dosage thing might make sense,
and also like yourself, he is extemely
sluggish with this medication and his
concentration and memory is shot to bits
at the mo !
Thank you so much both of you for all of
your advice, I will print this up and give
it to him this weekend to have a read.
Kim x
but, at the same time, my life is much
much better. I still have the odd
seizure, but it's a quality of life that
works for me. Since adding keppra, I have
reduced tegretol to only 300 mg per day in
the morning. I hope to stop taking
tegretol entirely if I can have about 6
months with no seizures at all.
