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Muscle twitches?

Tue, 06/20/2006 - 16:05
I am plagued by muscle twitching. Last night as I was falling asleep it was especially bad, so I decided to start a thread. I didn't have this right after I was diagnosed. I had an open head injury in the first year after I was diagnosed and it started some time after that yet I've heard others complain they have twitches but I haven't explored that with them more than just that. Last night was typical. I started having a small muscle in my calf start twitching rythmically. I already know movement, exercising, being still, nothing is going to stop it but a whopping dose of Ativan and I try not to take that as my emergency medicine unless I just have to. That one little twitching muscle progressed to probably about 6 places in that lower leg. Then my thumb started it, twitching rhythmically. Then a toe. Then both of my wrists started it. I know from experience if it's progressing that much and progressing up my body I better medicate or seize. I have an alerting dog too, sz detection dog, that I don't allow to sleep with me as she needs her rest too and I have a lot of nocturnal sz's. I hadn't shut her out of the bedroom yet though. We have our bed "loving time" and apparently I started falling asleep, before I shut her out, to give her a rest. She was alerting me, obviously becoming frustrated I wasn't doing anything. I do remember laying in bed as this progressed, persisted and going back and forth in my mind what I should do. I was having decision making problems I can see now. Usually I can't detect that. I'm guessing but I think I let this go on for about 1/2 hour, maybe longer, before I got up to get some Ativan but it's hard to say because this twithing at it's worst is like when I first started having jerks. I get them at the worst right before I fall to sleep. Usually I'll tell my husband, he gets up for me and gets me some Ativan. He's very ill right now, was asleep, I didn't want to wake him. So I got up to get the Ativan and I was aware after a lot of fumbling my cognition was very reduced. Usually I'm not aware my cognition has slid quit a bit but I was last night because I had a goal, get the Ativan, and I couldn't get the goal accomplished, couldn't remember where it was, how much to take, went back to bed several times forgetting why I was getting it but I remember that now the next afternoon. When that happens to me I seem to lack the what would be to me emotion of fear, any emotion. But I twitch at any time too. If it's long enough or widespread enough I also get an accompanying feeling of doom, something bad is about to happen is the only way I can describe it. Anxiety maybe. My dog doesn't alert every sz, she does alert these. I finally had to call my husband to help me last night, got medicated, went to sleep throughout the whole night but woke up with my back, jaws, fingers and toes hurting so no doubt I had a tonic seizure in my sleep, not an unusual experience. Here it is now 3:00 in the afternoon, the next day, and the twitches are starting up again and I really hate to medicate but they aren't stopping, another typical thing about them. I've called my epileptologist several times about my frustration these things don't stop on their own too often and he always says I have to medicate, so I do. I know this is sz activity and I know I can't will it away or exercise it to stop or any of that but it seems like I should be able to. I chronically think that. I think that about jerks too though. I'm curious if others have muscles twitches that are ongoing. I know people do I've read posts but I've never seen others explain how theirs manifest themself. I tried to explain mine. Last night was the first time I was aware my cognition is going down though. My husband told me that is common if I let it go for too long. It's always alarming to me that I don't know when my cognition is reducing dramatically because I know often I'm on the move. I've done some dangerous to me things not realizing my cognition is cut in half. I accept this happens I just wish I KNEW it was happening. Knowing it now on reflection from last night is unusual for me. I tend to have clustering and status sz's too. Ativan IV in the emergency room or a home injection is working very well to stop these which is a huge bonus in my life. I've gotten up to 60 mg of Valium with 10 mg of Versed and still been in a status sz. I've had I think it is now 6 drug induced comas to stop a status sz. But since they started using Ativan, they can get them stopped, always. So finding out 4 mg or less of IV Ativan stops a status or persistently clustering sz(s) is a huge bonus in my life. I don't feel druggy for days and days afterwards. Just lousy. Because of that I don't want to take too much. I don't want to build a tolerance. Also if this twitching goes on this long, would anyone characterize this as clustering or status? That scares me. I've had full resuscitation twice from clustering. But I don't FEEL like I'm sz'ing. Gosh this is hard to explain for me. I tried today to look up what this sz type is, anything about it. I don't know what it is really called and it's definitely not under "twitchies". I'm wondering if anyone can share their experiences with how their muscles twitch, do you know if you are loosing cognition at some point or does someone else notice and what do you do about it. Does yours just go away? Sometimes mine do. I'm still twitching right now but not nearly as bad. I think it just started again. Also if you do medicate, what do you use, in what dosages. I know my AED blood levels are in the middle. I just had them tested. Or do you know anything about this. I've never really been told what kind of sz activity this is. Or probably I have but I didn't retain the knowledge. My doctor wants to do a work up to see if I'm a candidate for grids to kill the epileptogenic cells where he thinks these are coming from but I've had 3 emergency brain surgeries. Emotionally I'm not up for having my head openned again. I've tried to correlate this twitching with increased physical activity, lack of it, everything and I can only find the correlation of increased stress, which I have plenty of in my life right now. Any experiences or information would be appreciated. I'm really sick of having my sleep disturbed by these. I've read so much about other sz types but never these. Gretchen

Comments

Re: Muscle twitches?

Submitted by angel_lts on Thu, 2006-06-22 - 13:56
Gretchen Twitching can happen because it is an aura or a seizure about to happen. But it can also happen when magnesium is low. Magnesium is taken with calcium. My daughter does not have seizures but has twitching always. Many times she is very low on magnesium, for she is junk eater. talk with your doctor take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Muscle twitches?

Submitted by gretchen1 on Thu, 2006-06-22 - 17:38
Thank you Angel. I've been tested for that. It's not the problem. I wish it was. I drink several gallons at least of milk a week (about 5) and add in all my vits/minerals/amino acid supplements with my milk, which a nutritionist told me to do. Because of my age and medications I take supplement vitamens and minerals, magnesium being one of them. I went into the hospital once and had every single test in the world to see why I sz so much. No one knows. I was checked for parasites in every organ, my brain probably already glows in the dark and all vits, minerals, amino acids were tested, again. All fine. I am a healthy eater, get plenty of sunshine. I don't even like junk food. I made a birthday cake for my husband this weekend, we have joint birthdays and I had no desire to eat it. Fast food to me is nauseating. Tons of stuff I do naturally but I wonder, what if I didn't? See? I'm HEALTHY! But then what is EVERYONE else's opinion of healthy? Because right now I feel all those not involved with this dreadful thing have such stupid opinions like "think positive", if only it was that easy. Hey let's teach a sz'ing baby to "think positive". Jerks. I'm sorry for my tirade, I should have saved it, I'm so angry but I am on the edge of terminal stress over my husband's health and it's all too much. I see a local neuro who has been very good, responsive. He works with my epileptologist closely who is too far away for my transportation problems to see regularly. I asked him - what classification are twitchies? After being told umpteen times it's because of scar tissue in my temporal lobe? He says, maybe it's just you. Well MAYBE IT'S JUST HIM. I'm furious at him because literature states if you fail on 3 AED trials, that's it. Forget it. I told him I can't take anymore AED trials. I'm so AED phobic it's ridiculous. So what does he do? Puts me on Trileptal - AGAIN. I've already failed that. Plus it's related to Tegretol XR which is horrid for me. I feel like I'm walking on springs and I get very paranoid. I called my pharamcist and he is questioning why I was put on Trileptol, he call my neuro and he say, to help her sleep better, she is stressed. There are OTHER things besides something bound to make my twitches worse. I asked him is this clonic movement? He responds, is it even epilepsy? Well I got diagnosed in my late 40's and I did not have it before. I'm very disappointed. I trusted him. I'm sorry for my tirade. I'm so frutrated and yes, scared. Here we go again, side effects hell No. 15. GIVE IT UP! But thank you for posting. at this very minute? Tulip is trying to alert the twitchies starting up again. And again and again. My thumb looks like it takes on a life of it's own! My neuruo might be wrong, my dog is never. Gretchen

Re: Re: Re: Muscle twitches?

Submitted by angel_lts on Thu, 2006-06-22 - 20:36
Gretchen I am sure they probably checked this too, calcium, potassium. My daughter was low on magnesium and potassium. She still has some twitching but not as bad. Also make sure about omega three fatty acids. Worked wonders for me when it came to my seizures. Check this side out. http://www.webmd.com/hw/health_guide_atoz/aa11636.asp Hope they find what is causing the problem. SOme of these meds as you know causes all kinds of problems. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/

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