Hi

I have posted here and on the anxiety board before but I've finally been diagnosed with simple partial seizures. The weird thing is, that's the only kind I have. Anyway, I had gone seizure free on Tegretol for 6 years so we cut the Tegretol down and eventually I was taking none. Two months later, the simple partials started again, only way more frequent than they ever were. My doctor reinstated Tegretol and I'm still having them!! I am up to 600 mg. a day (which I know is not a high dose but I went two years seizure free on just 200 mg. per day). Why would something that worked so well before not be working now? The only difference is I'm not in my teens anymore and I'm about 50 lbs. heavier than I used to be.

Help, anyone?

Hi Gordie, sorry to hear your sez. are back! There could be several reasons your seiz. haven't stopped yet. How long have you been back on the Tegretol ? Most meds. take several weeks to work completely. Also the differnce in you age and weight could be factors. Another thing that could be a factor is the amount of stress your under. If you are under a lot more stress that in itself can increase seiz. activity. I know it plays a big role in mine. Also sometimes a medicine just becomes ineffective for you. I've had that happen too. Good luck and hope you get them stopped again. Laura

It was when I would have been a first or second year college student when my seizures drasticly changed, and the dr's started scratching their heads. They tried adding on one frequent drug to teg (regular tabs back then) Then they changed me over to XR a little later; Added on another frequent drug (so 3 drugs back in this point of time) the trial and error continued.

I had been holding seizure free and driving since I was 16. I figured it was a latter change in my body that caused the therapy I was on to become ineffective for me.

I then went on a rollercoaster of meds and attempts at adjustments, different combos until the Dr's found something that somewhat worked. It wasn't until I moved and found a new Dr that tried a different drug combo that seemed to work better with my system.

My theory, from some of what I have read, is some peoples bodies stabalize out around age 20 or so.. Thats why there may appear to be a change in seizure control. There have even been posts on here from others about this.

As for what works, Best of luck in finding it. Keep your log book of seizures, when increases or decreases are made, drug changes, etc. This all helps to show the overall benefit or not of a drug. In the past I would total my monthly seizures (between 4-10 back 7 years ago when I started logging) to now where it is usually less than one a month. However by keeping that log it helped the Dr's in their decisions.

As for the Teg dose, I could handle 1200-1600/day without symptoms (still on 1200/day). When they tried 2200 spread across 3xday THAT I could not handle (800 AM, 600 noon, 800 PM). The spacing had to be precise.

With my 1200/day of Teg I never had had problems with that. I know others can't take that high of a dose, but again, I am the odd duck. I have a tollerant system for medications. I have been on this level of Teg since I was a child so the dose is normal in my eyes.

Hearing a person is on 600 sounds low when I think what I'm on; wishing I could be on that amount; yet my bloodwork shows my dose is smack dab in the middle where it should be for levels on Teg.

So make sure to have levels if your Dr has not ordered them yet.
Teg has TWO types of levels that can be done, standard, and a "free" level as it's called. The "free" level is lower in numbers for the range, but some Dr's feel it gives a more accurate reading of the syrum in a persons body of Teg.

and NO, I am not a Dr, intern, nurse, or specalist. Just a patient that became overly educated. <grin>

--Travis

Thank you both for your input.....I think it must be my body changing or something. When I was first put on Tegretol, I was 18 years old (I'm now 27). I had no problems with it whatsoever. This time, I got nauseous going from 200 mg. to 400 mg. then 400 mg. to 600 mg. (I should let you know that I've only been on the 600 mg. level for about a week and a half now so it hasn't been long at all). The nausea has gone away though....

I have been keeping a (sort of) log and my seizures seem to be related to my cycle....who knows.

I went for an MRI this morning to rule out other possible causes (tumors, yikes!!). I had one in 2002 though that showed nothing so my doctor isn't too worried.

Wish me luck!!

Hello

Good news, I had my MRI yesterday and got the results and my neuro said everything looks fine.

He's going to switch me to an XR form of Tegretol (Carbitrol, I think) and see if that helps.

Tripp takes 1200mg Tegretol XR daily....and he handles it fine...no problems..his levels are around 10 -14 I believe. He is a little guy...5'1" and 123 pounds.
Some can handle high dosage and some can't.

Hope you like the XR form.
Betty

I was on Carbatrol when I had insurance, and much preferred it to regular carbamazepine. I had no trouble with it at all, and it made a huge difference in the frequency of seizures...now, on disabiliity, so no insurance, and no medical help to get it - one last place to try, but I fall in that space between not totally broke, and having enough to afford 6 different prescriptions.

Wow, I had a bad night last night. Not sure if it was due to the Carbitrol or just a coincidence as I do get migraines, but I had a killer migraine last night. Woke me up at midnight and I was vomiting until 4:30 am until I finally got some sleep. I'm alright now, just a slight headache.

Plus, I seem to be having MORE not LESS of my seizures (mine involve thoughts coming into my head and then leaving-no consciousness lost). I have had one for three days in a row. That's MUCH more than ever.

Sorry, just venting from lack of sleep :yawn:

I forgot, you can't tell w/carbatrol if the meds come up, the casing disolves thankfuly (compared to TegXR).

If it was shortly after you administered the meds that could have been possible you lost the medications.

As for headache I cannot think of a reason. Make sure to follow the warnings for possible food interactions.

--Travis