Joined: 13 Dec 2003 Posts: 200 Location: Australia
Changes In Me the Rollercoaster Posted: 08-20-05 00:45am
Dear everyone and thankyou for reading my
posts. I have now had epilepsy for 2 yrs
and I have tried 3 different medications
and seen 3 different neurologists. I have
been on tegretol cr up to 800mgs and I
have been taken off of that about 8 months
ago from swelling in my legs and mood
swings like you couldnt believe. I am now
currently on 2400mgs of epilim or ( sodium
valproate ) a day plus keppra 2000mgs a
day or (levetriacetam) I have noticed
alot of changes in me. I am a 23 yr old
female and my periods stopped then I
regained them the drs told me I had a case
of amenoria which is caused from the
epilim. My hair fall out when I shower
and it has gone all curley like an afro.
My seizures are alot better. I acctually
went 40 days without a grandmal until the
other night. I still have absencemoments,
my memory is shot to peices. But all is
well. The swelling in my legs is all gone
away now. And the epilim has made me gain
20 kgs of weight. The drs arent worried
though because they say its just the
medication or fluid retention. I will
tell you all though I am not looking
forward to this summer though. Also my
girlfriend tells me that latley in my
sleep I have been jolting alot since my
grand mal seizure 3 days ago I will be in
a deep sleep then I will scream and wake
her and jolt about 6 times then stop then
jerk rapidly a few seconds more and repeat
this motion another dozen times. And I
have donw this alot. She says its like I
litterally jump out of my skin and hit the
bed hard. I thought I was going so well.
I carry on sleeping through this all and
then have no recolection of it at all.
Nothng is on my mind at all. I will be
seeing the neurologist again in a week.
And I just dont know if its all real you
know. When I am good I feel great and I
want to get a ob and get mylife back for
me and my partner and I guess I am just
down at the moment it sadens me that I
talk my problems out through a computer I
hope that you all understand and sorry
that this is the longest letter. One more
thing after a huge seizure do any of you
feel like you are all mixed up inside. I
really feel like I am on a nasty
rollercoaster that I cant get off when its
hapening I remember small portions but
that is all. And weird vocal sounds also.
My partner says she has never seen a
person twist as I do.
|
pianist995
New User, Becoming EHEALTHy
Joined: 17 Oct 2005 Posts: 9 Location: Idaho
Seizures Posted: 10-17-05 15:19pm
I too have felt many times since being
diagnosed last march that i've been
confused, trying to figure out why
something like this can just happen out of
the blue like it did with me, with no
apparent cause for it, and then to learn
that i'll be on medication for probably
the rest of my life.
It's been difficult for me to deal with,
as i'm sure it is for about everyone, even
more so, I imagine, parents of children
with epilepsy. I have 3 boys myself and I
can't imagine having to deal with that,
we've dealt with enough with our youngest,
without epilepsy added onto that.
And yeah, I felt pretty weird and
disoriented after my last seizure. It was
especially devastating because when we
went in to the doctor, that was when he
told me it was epilepsy, and that he was
putting me on medication (keppra, 1500 mg
a day) and that I couldn't drive for 6
months. I think only people who are
restricted from an activity they've done
for years, that is really pretty necessary
sometimes, can understand what that's like
to be stripped of the ability to do that
for months.
I hope all will get better for you. I
know how hard this is to deal with, just
in my own perspective. We are thinking
about having a 4th child, and so i'm going
to see my neurologist on wednesday to
discuss it with him. We'll see what he
says.
|
eddie83
New User, Becoming EHEALTHy
Joined: 14 Apr 2005 Posts: 11 Location: Australia
Posted: 10-20-05 23:11pm
Hi sami,
i'm also on epilim (1800mg a day) having
officially had epilepsy for 2 years now
almost to the day. I've experienced a
lot of the things you mention and the term
'rollercoaster' really sums it up. I've
put on ten kilos and my body shape has
completely changed, my hair falls out all
over the place and my memory and
concentration span is terrible. That has
probably been the most frustrating thing
for me as i'm trying to complete my uni
degree and I used to be an a+ student, now
I scrape by with passes. I can directly
link my medication to when my uni marks
started to get worse.
My boyfriend has also had to deal with a
lot. I'm scared to sleep alone most
nights because I do the same jerking, then
shaking, then not breathing for a while,
then I jerk again and 'fall back to
sleep'. No memory of it whatsoever in
the morning and he can't wake me while
it's happening. There doesn't seem to be
a pattern to it though so I don't think
that the sleep monitoring (spending a week
in melbourne hospital) suggested by my
neuro is worth the time or cost. Knowing
me, I won't perform when the docs want me
to. Maybe that might be right for you
though?
I also feel pretty jumbled and not myself
after a grand mal (only having about 1 or
2 every 6 months) for up to two or three
days, and I feel like i've run a marathon.
I cry a lot. And vomit (maybe stress
related). Since i've been having these
night time fits though I think I feel
jumbled the following day. Same feeling
as with the grand mal, but only till that
afternoon (like a killer hangover!).
Sorry I haven't really given you any
answers. Your post just really struck a
chord with me because a lot of your
experiences are just like mine.
Hopefully knowing you're not alone
provides you with some relief, and that
things get better for you soon. Xoxoxox
|
eddie83
New User, Becoming EHEALTHy
Joined: 14 Apr 2005 Posts: 11 Location: Australia
Posted: 10-20-05 23:11pm
Hi sami,
i'm also on epilim (1800mg a day) having
officially had epilepsy for 2 years now
almost to the day. I've experienced a
lot of the things you mention and the term
'rollercoaster' really sums it up. I've
put on ten kilos and my body shape has
completely changed, my hair falls out all
over the place and my memory and
concentration span is terrible. That has
probably been the most frustrating thing
for me as i'm trying to complete my uni
degree and I used to be an a+ student, now
I scrape by with passes. I can directly
link my medication to when my uni marks
started to get worse.
My boyfriend has also had to deal with a
lot. I'm scared to sleep alone most
nights because I do the same jerking, then
shaking, then not breathing for a while,
then I jerk again and 'fall back to
sleep'. No memory of it whatsoever in
the morning and he can't wake me while
it's happening. There doesn't seem to be
a pattern to it though so I don't think
that the sleep monitoring (spending a week
in melbourne hospital) suggested by my
neuro is worth the time or cost. Knowing
me, I won't perform when the docs want me
to. Maybe that might be right for you
though?
I also feel pretty jumbled and not myself
after a grand mal (only having about 1 or
2 every 6 months) for up to two or three
days, and I feel like i've run a marathon.
I cry a lot. And vomit (maybe stress
related). Since i've been having these
night time fits though I think I feel
jumbled the following day. Same feeling
as with the grand mal, but only till that
afternoon (like a killer hangover!).
Sorry I haven't really given you any
answers. Your post just really struck a
chord with me because a lot of your
experiences are just like mine.
Hopefully knowing you're not alone
provides you with some relief, and that
things get better for you soon. Xoxoxox
