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newly diagnosed (yesterday!) with temporal lobe elpilepsy...HELP!!

Sun, 11/21/2004 - 11:03

I have had 2 nocturnal seizures this year.  First was in March while skiing in Colorado.  They attributed it to low oxygen level.  I thought that once I got home, that life would return to normal.  Fact was, that I struggled with  memory loss (short term & long term) for the rest of this year.  Second grand mal seizure was 3 weeks ago.  Exact same scenerio, excelp the altitude.  It happened at about 5:30 a.m. and my poor husband witnessed the whole thing.  After following up with a neurologist and having a CT, MRI, EEG and multiple labs, temporal lobe epilepsy is the diagnosis. 

 It all makes so much sense now.  The past 20 + years of deja vu, the increasing memory loss, and the feeling of occasional euphoria and depression that I could not explain before.  I have lived this way so many years that I don't know what "Normal" is.  I spent over an hour last night reading some of the messages on this website.  You know, it is funny how when you finally hear other people talk about things you've been hiding in your heart for so many years how freeing that is!  My husband never understood, my children didn't need to be burdened with my issues, and friends never seemed to be open to hearing my problems. 

My daughter (18) also has deja vu frequently.  She is very intellegent and is a theater major.  She is taking this diagnosis and running with it.  She thinks she absolutely has TLE also.  I have spoken iwth my neuro about her and she feels that right now she doesn't need to be seen.  I'll definetly continue to watch her for increases in symptoms.

I was started on Dilantin, 100 mg 3 times a day.  I liked that because the Dilantin made me just not feel hungry or interested in food.   After a week, my lab levels were out of whack so the doc changed me to tripleptal.  Started on 150 mg 2 x day, moved up to 300 mg 2 x day.  After my appt yesterday, she increased me to 300 mg in AM and 600 mg every PM for 2 weeks and then 600 mg evey morning and 600 mg every evening.  The first dose makes me sleepy, but I seem to adjust pretty quickly.  Does any one know much about this drug, like side effects or things to avoid? 

Thanks for listening.  I have to go to work...busy day!!

Becky

 

Comments

RE: newly diagnosed (yesterday!) with temporal lobe elpilepsy...

Submitted by isabelaustin on Sun, 2004-11-21 - 10:45

Hi Becky

I'm also new to this forum. You'll see my post under "Newbie etc" (and I've linked it to this message). Wow! You've really had a hectic time before and recently having been diagnosed. I've never had a grand mal seizure, but have these little annoying seizures all the time, memory loss and deja vu. More worrying is the accompanying depression and anxiety. My hubby and I were just on the net today looking up my cocktail of drugs and the side-effects are amazing. I'm actually wondering how much one drug affects the other. Anyway, I'm getting off the topic here. I just wanted to say, totally unhelpfully, that I was initially put onto Tegretol for my TLE and am now on Lamictin which is going well and have no idea about the one you've just been prescribed. We found a great site today if you want to look into meds. Check out www.prozactruth.com. It has a wealth of info on drugs, their clinical trials and their side effects.

I haven't received any reply to my post, but I hope you receive some support on your side from people who have more experience. All the best to your daughter who sounds as brave as her mom:)

Cheers

Isabel

Hi Becky

I'm also new to this forum. You'll see my post under "Newbie etc" (and I've linked it to this message). Wow! You've really had a hectic time before and recently having been diagnosed. I've never had a grand mal seizure, but have these little annoying seizures all the time, memory loss and deja vu. More worrying is the accompanying depression and anxiety. My hubby and I were just on the net today looking up my cocktail of drugs and the side-effects are amazing. I'm actually wondering how much one drug affects the other. Anyway, I'm getting off the topic here. I just wanted to say, totally unhelpfully, that I was initially put onto Tegretol for my TLE and am now on Lamictin which is going well and have no idea about the one you've just been prescribed. We found a great site today if you want to look into meds. Check out www.prozactruth.com. It has a wealth of info on drugs, their clinical trials and their side effects.

I haven't received any reply to my post, but I hope you receive some support on your side from people who have more experience. All the best to your daughter who sounds as brave as her mom:)

Cheers

Isabel

RE: RE: newly diagnosed (yesterday!) with temporal lobe elpileps

Submitted by isabelaustin on Sun, 2004-11-21 - 11:03

PS. My husband just read read your post and told me to Google 'tripleptal'. Interesting results. Check them out. "Significantly Reduced Partial Seizures"..."major improvement in sleep cycle"..."put on tripleptal for depression"...

Tripleptal is apparently better with regard to long range liver damage but can cause heavy drownsiness...also check out the sites Google comes up with...

Isabel

xxx

PS. My husband just read read your post and told me to Google 'tripleptal'. Interesting results. Check them out. "Significantly Reduced Partial Seizures"..."major improvement in sleep cycle"..."put on tripleptal for depression"...

Tripleptal is apparently better with regard to long range liver damage but can cause heavy drownsiness...also check out the sites Google comes up with...

Isabel

xxx

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