Just Prescribed Keppra

RE: RE: RE: RE: Just Prescribed Keppra

Submitted by Gretchen on Wed, 2005-05-25 - 01:17

Heck - Now I can't get Wedge out of my mind. Oh well. Never mind ever my very poor memory. First off I'm intractable and if for no other reason, the side effects of almost all the AEDs hit me like a sledge hammer. I'm not just "uncomfortable", some of them have made me a near lunatic. I have AED phobia and I kid you not. BUT honestly? Everyone has such unique experiences, reactions to these AEDs? It just astounds me. Because as an RN? I've never seen any group of medications where so many have such a different reaction, good and bad. So to ask, and I think your question is perfectly valid, how it goes for others? It's a good question, but I do think Bruce gave you the most valuable advice, at least from my stand point and that is:--go up v--e--r--y slow. If you start experiencing side effects, consider talking with your doctor at stopping at that dosage and see if your body adjusts before continuing to go up. I've had some doctors jack rabbit me up on dosages because I'm sz'ing so much and all that's done is make that AED fail because the side effects go berzerk. It is not worth it (say that 10 times and click your red shoes together - I'm from Kansas. And then hope like hell you won't be the mommy from hell).--Also I'm rather shocked reading how many some people here take for AEDs because I thought the axiom as Bruce said was no one should ever be taking more than 3 AEDs at a time. My epileptologist has also told me that. But I'm not a doctor and I'm only reporting what I've read on forum boards and what my doctor has said to me personally as his patient. Now twice I have taken as many as 5. I had an insulin pump implanted so I could get a continuous infusion with very very low dose AEDs in an attempt to control my seizures, but it failed. But that was a rare thing and desperate measure even my doctor told me he was doing. The second time I was on 3 AEDs all the time and then 2 other AEDs I'd take on an as needed bases if I started clustering which at that time was almost every day or every other day. That failed.I will tell you my Keppra experiences though because I think it's interesting. About a year after I was diagnosed with generalized sz's I started getting myoclonic jerks. I've read other people have them like I did then. Right at that moment when you're just about falling asleep at night? My jerks would start up. Each night it would be one anatomical part of me, but a different one night to night, and I'd have a zzzt...JERK, hard, about every 2-3 minutes for about 30 minutes. Then I'd go to sleep. My "neuro" at that time added Keppra for the jerks. What the Keppra did? I have not one more time had that experience I just described. Even off Keppra. I was on Keppra for 4 weeks. I was still going up in dosage, had reached 2000 mg, 3000 mg is tops, but my jerks changed to random throughout the day instead of that 30 minutes at night. But they weren't as hard, and not nearly as frequent although I would have twitches on some nights just before I fell asleep. I had office samples for those 4 weeks. Ran out, went down to fill my script and when they said $600 please and we were hocking about all our possessions and eating one meal a day? I turned around and walked out. Called my neuro and his sample closet was bare - supposedly. Actually his receptionist/wife detested me but it was mutual. Then I changed to an epileptologist. HE put me back on Keppra. Up to 3000 mg in 6 weeks. Jerks stopped for the most part. And weren't as hard. And I THOUGHT I was amazingly having no other side effects except I couldn't jump out of a chair too fast or I'd get orthostatic hypotension or dizzy and see stars, which passes quickly. But still I couldn't afford to buy it once the samples ran out. So my epileptologist started a deal that when my jerks and twitches were increasing he put me on short courses of Keppra or limited time, 6 weeks was the plan and that seemed to be helping quite a bit. BUT after about the 4th time or so I did this? I realized I was getting profound depression and even after I went off the Keppra it hung around for several weeks. I didn't recognize that as a side effect until I was put on Tegretol XR and got profound paranoia and if you've ever had paranoia? You'll never forget it. I have real respect for anyone who suffers from that - it twas horrid. But it made me wonder - was Keppra giving me depression? I started reading different epilepsy forum boards and sure enough, some people were getting depression on Keppra, bad enough like me, they had to go off of it. I asked my pharmacist about it and he said that the Keppra people were going to list that now as a potential side effect or had. I don't know because the decision we've made is, I'm no longer going to go on it although it does help me a lot with jerks/twitches and I will tell you I will sacrifice nearly anything to not cluster with twitches, except the depression got worse with each short course I went on until finally - it got rather dire. No more Keppra for me. All to say, it helped my jerks. None of my other sz's. For whatever reason it changed the way my jerks presented themselves even when I went off Keppra but it also I figured out gave me profound black hole depression that kind of crept up on me. But remember too please - I swear if there is any side effect a person can get from an AED I am sure I probably will get it. So I'm not your good barometer. But that is my experience.GretchenPS I was SO pleased to hear Neurontin, an OLD drug, is having a big look taken at it for something - I forgot. At the very first my internist was determined I was going to take Neurontin. I took 2 pills and it was like for 3 days I was given a general anesthetic!