[GRUMPYPA]

I was diagnosed with grand mal epilepsy over twenty years ago. I recently had a bad run on having a lot of seizures. I was put into hospital for the long term video eeg monitoring for a week (what a boring week) I also have a few psedo seizures. Whilst in Hospital I had two pseudo seizure just through stress of being in hospital and boredom The neurologist then told me I am not epileptic and will ween me off my drugs. Unfortunately I didnt have a proper seizure. What should I do as this was just a second opinion as I didnt think my normal nuro was doing enough.My wife does not want me to stop my drugs as I have done this before and all hell broke lose. Who do I listen to. Thanks I hope someone can help me join message boards.

[DePressMe]

I just recently had 3 grand mal seizures back to back. Since I had one in the hospital and the doctors saw it--it seemed to make them take it more seriously. Since taking the meds I have not had another seizure. I sure hope you can find a doctor who understands your case. Seizures big or small are extremely important.

[Fresia]

With your understandable hesitation and concern to follow the course of treatment that the one is recommending, if it were me, I would actually get another opinion, a 3rd opinion, given what I know about seizures. If I have had the seizures in the past when I have been off meds and this entire time I had been on the meds without any or small ones (just as serious), who's to say I wouldn't have them full force once off the meds again. If I was having even small ones even on meds, there is no way I would go off the meds and would find a doc that listens to my concerns. To me this is a big risk and should not be taken lightly.

I have another condition in which w/ the meds I am fine but I had to move, and changed providers. The new doc wanted me to go off them to be sure it was an accurate diagnosis, even with years of documentation. It could have killed me. We are not lab experiments at their whim. In some conditions it is the case where things can change, and meds are no longer necessary; the only way to find out is by going off of them. Perhaps this what they are saying but this is a case where the risk is high, but if titered VERY slowly so if going to have break through attack, can immediately go back up and not suffer so. BUt it sounds like you are already having break through even on meds, does not make sense to decrease; this is why I would look for another doc.

Take in all of the information and decide what course of treatment you think is best for you and which doc you feel most comfortable with for your care. There is no harm in getting mutliple opinions and it is to your benefit. I would then stick with that doc that fits your care idea best and go from there. Do what makes the most sense to you, your body, your life. I wish you the best as you make decisions in your care and as you move forward. best of luck!

[GRUMPYPA]

Thanks for your replys I got the second opinion because my usual nuro I have been seeing for many years I thought he wasnt doing anything, but after this latest ordeal I will be going back to him,He obviously Knows what He is doing thanks again Ill keep you all posted

[Amanda_1981]

I was recently in the hospital too getting the eeg test done. The thing about that is, sometimes it can take awhile for a seizure to show up on it. I was there for 16 days before they saw any seizure activity. I know people who have had to stay for a month or two to get some answers.

I'd inquire about going back and maybe staying a bit longer to get some answers. Hopefully your doctors will start taking it more seriously!

Also by getting worse when off your seizure meds, how do you mean? I know when they weaned me off mine while I was in the hospital (to try to induce a seizure they make you go off your meds), I fell into a deep depression because my seizure med is also used as a mood stabilizer for my depression.

Hope you get some answers soon!