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.
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
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