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can anyone give me some advice about tegretol ????

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Old 06-12-2008, 06:06 AM   #1
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Post can anyone give me some advice about tegretol ????

hi everyone i been suffering with serizures since april 06 but didnt know it was seizures i just found out in dec 07 it really was seizures i thought maybe it was but wasnt sure since i had them as a child i was 4 then they lasted till i was around 10 they went away went all through life without anymore then at age 43 i had ovary surgery and thats when they came back only all the drs i went to kept telling me it was panic well i had a veeg done in nov 07 but the drs never ever bothered to call and tell me i found out when i went to get my medical records because i was switching drs because the one i was seeing left and it said YES it was seizures i believe they said it was absent seizures not sure .maybe absent seizures are when you dont know when your going to have one i know nothing about these seizures i just knowe i hate them ,what i do is i start getting really confused then i look off into space and the peoples voices seem like they are far away ,my stomach starts hurting oh and my head gets this horrible headache my dr called in a drug for pain called ultrum 50 mgs have any of you ever heard of this drug he said its not habit forming and wont cause constipation cause i been on darvacets 650 because nothing else ever worked ,oh i got off track here i also fall to the ground my eyes start flickering my body stifens out i shake my hands roll into a ball and i just sqeese them open and shut then i start to moan and then the loud screeming starts this lasts for 1/2 hr to 45 mins,i dont have them as often now but i still have them i started on depakote xr 1,000 in dec to april never had 1 seizure i took a 500mg in am 500 in pm my levels was 50.9 dr said mine should be around 175 ok so now im being s3witched to tegretol 600 mgs 200 3 times a day has anyone took this medication and if so how well is it ?? he also said i wouldnt get as tired on the tegretol cause with depakote xr i was sleeping all the time no energy so im hoping the tegretol helps better its not the xr either its just the reg ,he did say i may get a little dizzy at first and if i do to take just 2 then go back to the 3 ,im also to take tegretol and one 500 mgs depakote at the same time but stop the depakote after 1 week then just tegretol any advice here would ease my mind cause i want to take the best medication i need to help with my seizures oh and has anyone ever heard of a person having a seizure if they become stressed or upset??? cause i sure do .
oh and the dr wants me to do a sleep test where i have just 4 hrs a sleep and i do not know how i can do this i fall asleep now but he said by doing this he can find the seizure in my brian and that way he can put me on the right medication he also thinks mines EP. and said he thinks once he finds out where in the brain i wont have them for the rest of my life said maybe 2 yrs and i will be crused i sure hope so only time will tell on that i do drive in town only though but not often i start feeling scared but i dont have a seizure but out of town no way im not ready for that just yet i do walk into the stores again and never fall and iam going to my daughters softball game tonight i missed 4 so far and i told her and myself im going today plus the end of the month me and my family are going to a amusement park and im going to enjoy myself i cant keep myself locked up in this house forever i have to get out and enjoy that big world but i told my husband NO WHEELCHAIR im walking on my own i told him he has to give me the chance to do this plus im on medications for the seizures so i either walk in there or i dont go im only 46 just had my b-day and i know i can get past all this i see lots of people out in the world living with seizures and they go places and so am i as of now.i been locked up here way too long the only places i went was to my mom's or family and to the drs and thats it well not anymore miz vickie is getting out and going to live a normal life again.
thanks all and any advice about the 2 meds would help....

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Old 06-12-2008, 06:26 AM   #2
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Re: can anyone give me some advice about tegretol ????

I wonder why your doctor started you on the regular Tegretol and not the CR (or XR-- i forgot which it is). The CR eliminates peaks and valleys that you can get with the regular Tegretol.
Anyway, no one can really say how you will react to the Tegretol. Everyone reacts to different meds in different ways. Personally, Tegretol has been fine for me. It doesn't completely control my seizures, which I why I also take Keppra, but I never had any side effects from it except for when I first started taking it, it made me really tired for about a month.

And yes, definitely go out and live your life. If you don't have the grand mal type of seizures that often, don't be afraid to go to your daughter's games, or to go to the amusement park with your family (though I would avoid certain rides like roller coasters. I find that anything that gets me really excited, like a ride with unpredictable twists and turns, can cause me to have a seizure). It's probably good that you don't drive much since your seizures aren't completely under conrtrol, but don't be afraid to just live your life.

And yes, to answer your question, stress can definitely be a trigger for many people with epilepsy.

Good luck with everything!

Old 06-12-2008, 02:42 PM   #3
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Re: can anyone give me some advice about tegretol ????

If I was going to go on another drug,Tegretol would be my drug of choice. I found that it had the least amount of side effects for me. The only thing to watch out for is your platelet count. Mine dropped REALLY low and i was forced to get off of it. Other than that, I really liked this medication.

Last edited by life_is_good; 06-12-2008 at 02:43 PM.

Old 06-12-2008, 09:40 PM   #4
Travis from MN
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Re: can anyone give me some advice about tegretol ????

Teg takes about 3 weeks to level out, maybe longer depending on the person. 600mg isn't that bad of a dose. I've been pushed much higher before (2200). 1800 is about the most MY system could handle.

Teg and Depa have an interaction if I recall. Read the FDA papers to make sure I am remembering this correctly. I was on Depakote, Tegretol (XR) and Dilantin (last one has a BIG interaction with Depakote) at the same time when I had problems.

Stress CAN can cause a seizure, as can lack of sleep. Our bodies need a full nights rest (or as much as we can get).

The number range I have for Depakote is 40-120 (for blood test results) however I am only going by what a book is saying, so it's a ROUGH range, not sure if it's for monotherapy (one medication) or polytherapy (more than one). The ranges of dose change as well with Depakote when we are on just Depakote and when they add other medications.


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