Hey Elmer!
I actually absolutely hated the ambulatory eeg..., so sorry I'm not a lot of
support, LOL! As soon as I got home, I was walking through a doorway and
my wire bundle got hung on the doorknob as I was walking in the door and
YANK!!! I almost gave myself whiplash. :( After that, I was afraid I would
pull the wires off. It was hard to move, hard to sleep, hard to get
dressed, the wires are cold and I like to wash my hair every day. I ended
up using a couple vacation days at work and raiding my teenager's bookshelf
and reading the Twilight series that are all the rage with the teenagers
right now. Not works of literary genius, but they were surprisingly really
good and took my mind away from my electrodes. The bad thing was that it
also made me pretty much stay in bed, stress-free, away from any triggers
and I did not have a seizure!
I understand about resisting medication - this is my first "daily" anything
- and it is twice daily. I used to joke about being grateful I didn't need
pills for anything because I thought if I needed pills I might die... But I
am actually getting very good at remembering. I keep the bottle next to my
bed. I used a pill organizer for a while, but I found I don't need one. I
do keep a couple at work because once or twice I have rushed out of the
house and realized to my horror that I missed my morning dose.
Side effects - they effect everyone differently. Personally, I think that
if I did not have a lot of weight to lose, the weight loss side effect of
the AED might bother me a lot - but I actually am really enjoying that
part. I had 100 pounds to lose. Now, I have 50 pounds to lose. I *have*
been trying to lose weight, but without a shadow of a doubt, I know the
topamax is doing something because I have never been successful for so long
before. It is really nice to not be obsessed about food - that's all it
does - makes me not think non-stop about it (unless I am thinking
specifically about side effects). I am also cold, soda tastes terrible, and
chemicals like artificial color and flavor tastes funny. I get pins and
needles in my hands, feet and face with temperature changes or a little
easier than if I were not on medication. There were transient side effects,
too - ones that went away after a short time of just "getting through
them". Such as dry mouth, dry eyes, no sweating, increased thirst
(excessive - seriously), brain fog (not good when you run a supercomputer
for a living), increased libedo, increased figity-ness, insomnia, hair loss,
fatigue, heartburn.
But all these went away completely and back to normal with time - each
coming and going after its turn - around two weeks of each. I'm just down
to feeling cold most of the time, having a few pins and needles sometimes,
funny tasting soda and weight loss, and a strange desire to no longer drink
alcohol (which is fine since I'm no longer allowed to drink alcohol with the
topamax...). Again, I welcome the weight loss and hope it continues! A
strange up side, maybe?
I'm going to pay attention to whether I taste anything strange, but I don't
think I do...
Take Care,
Jen
On Tue, Feb 24, 2009 at 10:37 AM, Elmer Dorsey <elmerdorsey@
> Hey, Jen! Oddly enough, I received the same diagnosis yesterday. I
> described what happened with me in a previous posting titled "Tests" and it
> sounds a lot like what you experienced. My seizures started almost 10 years
> ago, but the seizure I had in January was significantly worse and was
> actually a series of two seizures. The neurologist I saw yesterday has
> ordered the very same tests you had, but said right off the bat that I have
> temporal lobe epilepsy. I have a weird taste as an aura instead of weird
> smells, but he kept quizzing me about whether I smelled things. When he
> mentioned "burning hair" it suddenly reminded me of an incident when I was a
> kid. I fell backwards onto the ground and hurt my head. The one thing I've
> always remembered about it was the smell of burning hair. He didn't seem to
> think that was significant, but it seemed like an odd coincidence to me.
>
> Anyway... I look forward to the tests - except for the ambulatory EEG. How
> weird was that to have the wires stuck to your head for three days???
>
> I'm glad to hear you say the side effects aren't bad. I've fought the idea
> of medication for 10 years, but I'm starting to come around a bit.
>
> -elmer
>
> --- On Fri, 2/20/09, Jen <aquarijen@gmail.
> wrote:
> From: Jen <aquarijen@gmail.
> Subject: [epilepsy] Diagnosed! But I'm ok.
> To: epilepsy@yahoogroup
> Date: Friday, February 20, 2009, 2:06 PM
>
> Hi All,
>
> A couple months ago I told that I was having episodes and I explained them
> -
>
> many said that they sounded not like seizures, others said that they might
> -
>
> but that's ok - I know that my perception of what is happening to me is
>
> going to be different than what an observer is going to tell me what I look
>
> like. And at that time, they had not been witnessed - we didn't know what
>
> we were looking for.
>
> So, after a sleep deprived eeg, an MRI and an ambulatory eeg, I've been
>
> diagnosed with having "Adult Onset Temporal Lobe Epilepsy" - I have Complex
>
> Partial Seizures and also Simple seizures - The doc said these are my
>
> "smells" -- when I smell burning wires or urine. She caught that on eeg.
>
> She caught other stuff on eeg also. The MRI is clear though, thank
>
> goodness. Apparently, the thought is that I did this to myself when I had
>
> my snowboarding accident last year when I also tore my ACL. I got my ACL
>
> repaired... That is almost completely healed now - but my head - my head is
>
> not.
>
> The Topamax is controlling the seizures for the most part now. Not bad side
>
> effects. The one complaint I have about it (and I'm not sure it is the
>
> Topamax) is that I've been feeling cold. Anyone on topamax feel cold? I
>
> mean, I know it is cold out, but other people around me are not as cold.
>
> Last night I slept with two sets of PJs and two hot water bottles and three
>
> blankets. My sweetie was in shorts and no shirt and only under the sheet!
>
> I was contemplating getting an electric blanket!
>
> Other than that, I'm ok. If I'm going to have Epilepsy, this is not too bad
>
> - I don't even drop what I'm holding. I'm just glad to have answers. I'm
>
> SO SO happy to find out I'm not crazy! I was starting to question... :P
>
> Now, I'm like, cool - it's just seizures - I've not lost my mind. :D Yes,
>
> it is embarrassing to wander in a restaurant or stare at a store, but since
>
> starting my medicine it happens less often. And I have a bus stop in front
>
> of my house. So, I'm ok. I'll be alright.
>
> Take Care All,
>
> Jen
>
> --
>
> Use it up; wear it out; make it do or do without! - L Reid
>
> [Non-text portions of this message have been removed]
>
>
>
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>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
--
Use it up; wear it out; make it do or do without! - L Reid
[Non-text portions of this message have been removed]
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