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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 Marksman on Thu, 2008-10-02 - 20:42
What is taurate and how do you get either of the two items??  I used to only have twitches when I hadn't had any sleep in a few days. (I have wicked insomnia) Sleep deprivation is a big seizure trigger for me.  I'm having some breakthrough seizures now and the twitches have become a constant aggravation now but I'm leaving for Central/South America soon and will be gone till January.  I'm not about to experiment with new meds while in a third world country so I'll wait until I get back before I go to the doc.  (Already taking 1000mg Lamictal) Something to help with those annoying jerks would Godsend though.  I'm getting tired of trying to eat dinner and throwing a fork at whoever is next to me.  I'm sure they're getting tired of it too...

Re: Muscle twitches?

Submitted by sprint22 on Fri, 2008-10-03 - 18:07

magnesium citrate is actuall just a mineral..that can be bought in healthstores or better still on the net........i was not prescribed these..but read that in high doses,magnesium is used to treat epilepsy!!?and it certainly worked for me...also fights stress and promoted good sleep and general calming(but not sedating..clear with your doctor..does not interfere with meds either...taurate is best/well absorbed and citrate is good too.....just google in magnesium taurate and cirate and give it a read.

I do hope that this is helpful x (the MG must be around 200-300 for me to be effective)

Beat wishes....it might be worth a try.

magnesium citrate is actuall just a mineral..that can be bought in healthstores or better still on the net........i was not prescribed these..but read that in high doses,magnesium is used to treat epilepsy!!?and it certainly worked for me...also fights stress and promoted good sleep and general calming(but not sedating..clear with your doctor..does not interfere with meds either...taurate is best/well absorbed and citrate is good too.....just google in magnesium taurate and cirate and give it a read.

I do hope that this is helpful x (the MG must be around 200-300 for me to be effective)

Beat wishes....it might be worth a try.

Myo-clonic

Submitted by CynthiaJanuary on Tue, 2012-11-27 - 15:01
I agree, Alyse! Thanks for your input. Do you have these as well? CynthiaJanuary

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