HJi Kath, I really sympathise with you. I"ve been through nearly every AED on the market, but my hypersensitivity to most of them and the coressponding aside effects has landed me up in ICU, medical wards and even psych wards. I can't tolerate brain dsrugs in general.

IK'm stuck on lamictal and a VERY tiny dose of neurontin, and I can sort of tolerate them except for the chronic severe insomnia from the lamictal which has triggered loads of seizures. I don't have the option of coming off meds, I'm drug resistant anyway and it's not likely I'm ever going to be sz free after 25 yrs. I did have a year off meds in my teens where I was fine, but the szs did come back. The meds are keeping me out of status and I know full well that having no aeds on board could kill me. But I am essentially out of options. There's 2 drugs I haven't tried (keppra & topomax) but I refuse to because I'd be gauruteed to get the psych side effects, and 2 neurologists have agreed that it's too risky for me to try. So I'm at the end of the line as far as treatment options go. At least I can function with the lamictal side effects compared wikth the other nasty stuff.

I'm very pleased for you, being able to get off your meds and not having any problems- amazing isn't it, how we suddenly "wake up" after stopping a certain drug? I've noticed it in the past, I had no idea how sluggish and drugged I really was because I'd adapted, then could suddenly think properly. I sincerely hope you don't need to go back on meds agin. I hope you're able to keep that appointment. Just be aware, that once you have had epilepsy you're always going to be more prone to seizures so the best thing is to try and avoid potential triggers (late night, alcohol, flashing lights etc).  I wish you well.

Kay

I did the same thing!  I couldn't handle the side effects either!  I've been drug free for over a year now and my head hasn't been this clear in ages!  What a feeling to be me again, I missed being me!  Good luck to ya!  =)

Keep the appointment, I still see my neurologist!  I have insurance that would cover the meds but man, I just could take it any more. 

I'm 38 and was diagnosed at age 11 with Gran Mal and Petite Mal Seizures.   

Have a very Happy Thanksgiving!

Tracy

Common sense is not so common!

I too, am way hypersensitive to medications and have a hard time taking OTC meds.  I've been this way for many years (I'm 43).

I've been told, to my face, from docs that I was their worst nightmare when it came to prescribing and many have labelled me as drug non-compliant when in actuality I had a intolerance and sensitivity to the medication.  I've had a lot of ignorance and bias towards me over the years and when I meet a new doc and inform them that they must go "low and slow" when talking meds... they tend to roll their eyes and huff under their breath.

My neuro, and/or neuros cause I've got a new one now that the old one left for another teaching institution (I have to go to college affiliatied hospitals due to no insurance/no money) both have stated that since I am not able to handle a larger dosage of Topomax than I'm on and have had bad results from some of the other meds in the past... then I have psuedoseizures.  Not refractory seizures - pseudoseizures and this was one of the signs - they've said.

The Topomax dosage I'm on is holding my PCs and has been for 6 1/2 months.  I'm just not on the regular high dosage because the regular dosage would likely kill me.  I simply can't go up another step due to horrendous side effects.

The dosage I am at now, is thankfully holding control but I do have anxiety that one day it will stop working like all meds eventually do.  Then what?