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gkt

Tremors

I am taking 1,000 mg Depakote ER and 400 - 500 mg Dilantin daily. The last seizure was 4/20/04 (which was when they increased my Depakote ER from 500 to 1000). I now have tremors. I had a blood level done yesterday and the Dilantin level is 19.7 (acceptable because "normal" is between 10-20) and the Depakote level is 49.7 (acceptable because "normal" is 50). The tremors are not constant, but often (and I probably notice them more than others). But my neuro says, "Would you rather have tremors or seizures?"Anyone else having tremors? I looked on the Internet and it's a side effect. (But I'd just as soon not have them.)

Comments

RE: Tremors

I used to be on depakote ER and I experienced them all the time. I would be trying to do something like writing or typing or anything that required concentration, I would just "shiver" and I was not cold at all. I discussed this with my neuro. and he suggested that I do something to keep the level of concentration down...like tap my foot or suck on my lip ...I thought that that could cause me to develope somewhat of a "tick" situation. I tried it anyway and it did work for a while (I was primarily taking Depakote 2500mg daily). I kept seizing and he changed my meds to Keppra, rarely tremor but developed many other side effects. I dont know if I like Keppra as much I still have g~mal's and lots of daily auras and still am the "clumsy" one(I can just be standing still and just fall over sometimes esp. when I close my eyes). I did gain 20-25#s on the Depakote and that was not good. You have to get used to the meds also. I sure hope that the Depakote works for you...oh yeah I was getting my blood tested all the time when I was on the depakote....do you?Connie Elaine

RE: Tremors

Thanks for responding. I can't remember if I mentioned it, but I take minutes for the Board of Supervisors (so it's on TV, and in front of many onlookers); therefore the tremors makes me self-conscious, and I certainly don't think I'd try your doctor's suggestion about sucking on my lip!Would you tell me about your auras? Do you drive?Thanks again for reading and responding.

RE: Tremors

Yes, I take it, as well, and have tremors from it that are bad. I jsut ignore them, becasue that is a side effect of the drug, and I am finall on the right combination of drugs after a nasty 3 years, and I over look them.I agree, they are a pain, but I think like your doc. I have 4 types of seizures, and I don't want them, I would much rather deal with a tremor which is pale in comparison to the seizures I have.Good luck with it.Nancy

RE: Tremors

Nancy:Are you tired as well? My husband, like you, goes along with my doctor, so I'm beginning to think I'm a whiner!I go to bed at 10:15(ish) and get up at 5:30. I go for a workout before work and I take a nap almost every lunch hour. Yesterday I almost fell asleep at the wheel going home.Thanks for your reply.GKT

RE: Tremors

GKT~I do get tired, but it is more of the fatigue that comes with all the misfiring in my brain. I have been really sick for 1 1/2 years with this, but have had it for 3 1/2. The last 9 months or so previous to this one, my seizures were hard to control, and I had to have a VEEG, and they removed me from all 3 drugs, and watched me have 3 different types of seizures on 3 different days, in an 8-day span.That is how they caught this, other than 2/3 abnormal EEGs.So, I was VERY tired before they did the VEEG, but have since gotten a little more energy back since they changed all of my meds but one.I would say that it goes along with this. Especially if you are just prior to, or after the seizure, as well, you can be overwhelmed by fatigue.Some of tiredness, can come from any AED, as most of them cause, to an extent, some variability of sedation, and that can slow you down, and make you feel tired.All your exercise can wear you out with epilepsy, as well. You are really over doing that.You have to watch how much exercise you get or do, when you have epilepsy, because the more you do, and the harder you do it, the more stressed out your body, and your brain get, and stress is HUGE trigger for seizure-prone people--and I mean huge.I don't think you are getting a good night's sleep either, with getting up that early in the morning.They (my epileptologists) always told me that epileptics need to try and get between 9-11 hours of sleep every night, so their brains can rest.I go to bed at 11 pm MST, or maybe a little later, but normally 11. I get up around 9-9 30 am MST. That is 10 1/2 hours of sleep for me.That is what I think.Nancy

Re: Tremors

Hi gkt. I'm certainly with ya on that one! I have tremors as well,mostly my left hand. It can be very embarasing at times. Sometimes it is so bad I have to hold it down with my other hand. In public is the worst. Sometimes I also have a very hard time writing or printing. My epiletologist says it is one of the meds I'm on and we need to change that but first I'm having a bunch of tests for my actual seizures. Also my friends and family often ask if I have eaten. Tell doc. you NEED to change meds and that you know there are many out there. Good luck Colina

Re: Re: Tremors

Wow. I am so glad I googled "Tremors" and found posts on this site.

I have had epilepsy all my life, but it didn't manifest itself into seizures until 2.5 years ago. I haven't had a grand-mal since then, but I still get the odd partial. I am on 250mg of Tegretol CR.

As for the symptoms, sometimes I could be sitting down, and out of NOWHERE, I'd get SEVERELY dizzy. Then it would stop. Sometimes I would get heart palpitations out of NOWHERE - and then it would stop. Somtimes I am just about to fall asleep and then the room would spin SEVERELY and snap me straight up in my bed. I had feared that these were partial's but I wasn't fully convinced, since the partials I usually had NEVER felt like that. The way I was able to tell that they WERE NOT partials is because - from what I UNDERSTAND, you don't have partials repeatedly in a row. At least thats what I've been told by people who also have epilepsy. Please excuse me if I am wrong. However, this is what I've been told.

I am now more at ease, and now I have to learn to accept them. I have to learn to control my reactions to these tremors, and not be scared. YEs, they are very scary sensations, but yes, as stated above, I would rather have tremors than seizures.