Refractory seizures and there increasing

Re: RE: RE: RE: RE: RE: Refractory seizures and there increasin

Submitted by gretchen1 on Fri, 2005-11-18 - 13:51

Hi Belinda - Sounds a lot like we're in the same situation. When I was first diagnosed I was controlled for 5 months and I thought, gee that was easy, except for putting up with memory loss, disorganization, fatigue from my AEDs. But then for various reasons I lost control and I sz daily, have had many injuries. I am totally and I mean totally AED intolerant. I'm not just uncomfortable. It's not a situation where I can just gut my way through AED side effects. They are severe, dangerous side effects. Rendering me with no quality of life. I saw where you mentioned you get suicidal on Neurontin? I get tremendous psychological effects on Tegretol XR and Keppra. On Neurontin I wouldn't know because I'm soundly asleep 24 hours a day. I've tried 11 AEDs, not all of them I know but I have become afraid to try any others. The worst one I had a trial on was phenobarbitol. I had horrid hallucinations that were so real I bailed out of our car when it was going 35 mph once. That was when I said - I've had enough. I've heard and there is a clickable on this site that states if I think it says 2-3 AEDs don't work, it's very likely no others will either. Then I ask myself why did my neuro at that time put me through 2 years of living hell with 11 AED trials and some of them multiple times. I've had surgery 3x but the first two was from an open head injury from clustering drops and brain hemorrhage. A year or two later, see?, can't remember, I had to have some of the scarring reduced and the blood supply stopped from the scar I had that was going back and forth from the brain. My epileptologist is not impressed by the VNS and said he wouldn't consider it for me. I was oriiginally diagnosed with generalized but after my head injuries I gained the diagnoses of frontal right lobe and bilateral TLE's. Surgery for me is now out. I am being encouraged to consider a grid work up to kill the epileptogenic cells but they admit that would only take care of partials I have on one side and my biggest problem is with generalized seizures I also don't think I could go through one more invasive procedure. Plus I really doubt and my epileptologist agrees it's a big chance, that they cant do grids as that is one of the places I hemorrhaged and it hit my speech and language centers profoundly for months. The rehabilitation from that was horrendous but at least I did recover that function. Would I again? I'm not willing to take that chance although I know they'd thoroughly test that before doing grids. I have tired some alternative things, certainly not all. Some of them sound like snake oil to me, others my epileptologist said could be dangerous. About accupuncture. I'm in the states and did find an accupuncturist that was good. But the accupuncture only stopped my absences for about 5 days. The treatments were $50. When I moved I tried two other accupuncturists and I believe that's an art form. I had no cessation of any kinds of seizures with them. All to say I think there are accupuncturists, and then there are the OTHER accupuncurists. It's too in vogue right now in my opinion, too lucrative for those who do it, to know if you're getting someone who really knows what they're doing. Some medical health insurances pay for it, others don't. I just didn't get enough gain from it. I have gotten a reduction of sz's with diet changes. My epileptologist feels the diet changes I made though don't follow the diet changes that effect many positively. I'm pro marijuana for anyone. I know of one man who uses it as his only AED, being AED intolerant as I am. I'm happy for him. But I tried MJ therapy under physician guidance and didn't even make it passed one day. That was dismal too. I'm not going to eat violet flowers. I'm not going to overdose myself in vitamens. I'm not going to have high colonic enemas. In fact those can be very dangerous. I guess all I'm saying is I commiserate. What I'm working on now is just accepting what I have, watching my triggers and paying attention to them more closely. Getting the depression and anxiety I can get from intractrable epilepsy under better emotional control and I'm having success with that. I don't know if this was the AED Bruce was talking about but there is a new AED coming out that is metabolized in the kidney, not in the liver or maybe it's already out. I don't have drug ins. yet, I'm sure it'll be very high so I'm not considering it until January when I am insured for Rx's. All I can offer you is the knowledge there are others out there with frequent seizures, intractable to AEDs, and not a surgery candidate. I really get annoyed though when others insist they have the "cure" for me when they are lay people and may be toying with my health by their suggestions. I have what I have and I must make the most of my life as best I can. It's not easy. I know I disrupt my family's lives too. That bothers me the most. But they're all loving, kind, never make me feel that I'm a burden. Well once my husband had a big blow but I guess in all these years I'll allow him one frustrated blowing up. Hang in there? And I'll promise I will try to do so too. We're not alone. Gretchen