I have had epilepsy since I was 2...I'm 22 now. I have had grande mal my whole life and at 16 I was diagnosed with another seizure...I think partial? But I was younger and not as concerned and I don't even know for sure what kind my second one is anymore.
They always wake me up from my sleep, and I get this feeling in my chest in my heart which my doctor said it could my aura before my seizure. Then I can't talk and I start coughing because it feels my breath was taken from me. And it takes me a few seconds to be able to put together words after it's done. Sometimes I drool as well. I don't really shake. I use to have them awake all the time before I was diagnosed and once they put me on lamictal for it I only have them sleeping now. (just like my grande mal which thankfully I haven't had one of those in years!) I think their partial. I've tried to look it up on the internet and can't find one that matches. Anyone else have something like this?
I'm thinking it's simple partial. Complex partial is the same as temperal lobe, isnt it?
yeah I've been lucky to have all my seizures in my sleep. About a year and a half ago I went on a cruise with my family and I don't know why but I had two seizures awake. I think the boat caused my equilbrium to be all wacked up. Who knows. Your son is also lucky to have all of his seizures in his sleep. What kind does he have?
They could be simple partial seizures. You are lucky to have them in your sleep.
Tripp has some weird ones too....he will stop what he is doing...his head turns to the left and he will smack his lips a few times...I can even talk to him and he will answer me. I will say "are you ok" and he will say "I'm fine" then after it is over (less than 10 seconds) he will resume what he was doing...once he had one while eating after it was over he was fine and continued to eat...was not tired after...just as if nothing happened. He has even turned completely around in a circle when he had one. I don't know what kind he has either......I call the "focal" to his doc and he doesn't correct me. He sees his neuro on Friday...I hope to have some answers as why he seems to get headaches (back of neck).He takes Tegerol 1000mg daily and 200 mg Lamitcal daily. He has lost so much weight...from 126 to 111 in the last two months...moslty from being sick...I think the meds are making him sick....but which one!?
From typing with others; some were amazed I could maintain my dose of 1200 mg/day of TegXR. When I was much younger they had me on 1600 and 1800 WITHOUT SIDE EFFECTS. So that tells you how tollerant I am. (they even tried me on 2200mg of XR later on and THAT did not work well; way too toxic!!)
HOWEVER that aside; some people can't take even 1000 of Teg without "feeling" effects of the drug. The dose you mentioned of Lamictal is low so it is doubtfull that is the problem just looking at the numbers. If lamictal was causing problems for his body; you would be seeing the rash symptoms most likely (think poison ivy skin irritation apperance).
Hope that helps give you insight. I was started on Teg when I was 5 yrs old... and I'm on TegXR still... never have been taken off it. All the meds I've been through in trial and error (around 8) it's the only drug that has remained in my treatment the entire time.
OH Travis!! Thansk so much for your answer!! I am armed with new info and can't wait to TELL his neuro what I now know!!! LOL I think I will ask him to lower the Tegertol and up the Lamitcal....all along I was thinking it was the Lamitcal and I BET it is the Tegertol.
All that sickness he is having just my be from the high level of Tegertol...I know when we have had his levels check they were a bit high...but no one ever changed them.
(((HUGS))) to you!!
Poly teg levels should be between (think mind) 4-10. It depends what works for that patient.
Mine hold at mid 8's at 1200/day on teg XR (with 2 other drugs)
(they say 8-14 for childrens scale) Teg or Teg XR it uses the same test scale.
They have two scales. One for mono therapy (higher range) and one for poly therapy (lower range).
Amazing what one remembers... but I've been on Teg so long it's etched into my head. 4 is considered LOW; so they like it to be above 6 usually unless the patient is showing side effects.
Once the ER told me I was at 6.5 and tried telling me I needed to up my dose at a hospital I never was at before. I bs'd the doc, agreed, than ignored his instructions. I was NOT going to overdose myself from a doc that had never seen me before. I visited my REAL Dr when I made it home a couple days later to see if anything was wrong.
What I tell others; Read the FDA papers (or from the drug makers website) so you know as much as possible on the meds... Thats what I have done for years when I was being changed from med to med so I wouldn't be suprised. My Epilepsy specalist is glad I do. He told me I was one of the few he doesn't have to worry about being up on my medications. That was nice to hear comming from my doc.