@just im currently only on tegretol, and I don't think that's causing them to be worse I was in a bad way before taking tegretol so it has made a big difference I think I would be having them a lot worse without the meds.

I'm okay Maureen it's just mentally exhausting to deal with at times , thanks John that information is helpful I've been avoiding going to my neurologist as I don't want to hear another normal test result strange way of thinking but I'd rather have something that's abnormal so it can explain what's happening to me, but I need to deal with the 5 day EGG results someday plus I've got new information he needs to know about it might help maybe.

I bruise myself when my body jerks when having a seizure on my arms and legs and I did bruise my chest once I hope your ok x x

I don't personally experience myoclonic seizures, but this is a reliable source to start getting some answers and advice from experts on what to discuss with your neurologist, because there is a form of myoclonic seizures that is very progressive -- thus you should make sure that this is not the type that you have.

https://www.epilepsy.com/learn/types-seizures/m...

Keep us updated. I will look for other expert sources with more details for you.

@A MyEpilepsyTeam Member Sorry to hear all of this! What did the do in order to get your Trileptal level down to the safe level (under 117)?

In 2003 when the only anticonvulsant that I was on was Tegretol, the pharmacist's error of giving me a high blood pressure medicine in place of Tegretol and thus my seizures went out of control once I went down to zero Tegretol in my body. However, the error by my neurologist (suffering from Alzheimer's and thus making all kinds of errors with who knows how many patients from at least 2003 - 2005) had me start right back up at 1600 mg of Tegretol after I had called him about the pharmacist's error and the results. The result was that I started having more seizures with too much Tegretol in my body, and it 2 months of me going in every week for a blood test and an adjustment in levels to slowly work me down to the stable level. Unfortunately, the summer of 2003 was the only time that I had anything beyond minor bumps and bruises from the seizures. I shattered 6 teeth and bit off the tip of my tongue.

And another error by him and nothing done by my primary care after he checked my Carbamazepine level too in 2005 and it was too high, with the adjustment done by my 2nd neurologist (after he first got me off of an anticonvulsant that is not supposed to be given to someone with Epilepsy or a Seizure Disorder) to get me down to the stable level. The damage from this was not as serious because I was not crashing down my teeth in out of control seizures but rather grinding my teeth because of them (my dentist made the molds and I got a mouth guard made for upper and lower teeth to stop this).

Thus, my question about if they have got your level down to a safe level, or is it a process that is still going on?

Mentioned Users

A MyEpile...