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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: Re: Re: Re: Re: Re: Re: Muscle twitches?

Submitted by spiz on Fri, 2006-06-23 - 03:09
Ok, here's one... Epilepsia partialis continua Epilepsia partialis continua has been defined as “regular or irregular clonic muscular twitches affecting a limited part of the body, occurring for a minimum of 1 hour, and recurring at intervals of no more than 10 seconds.” It is a rare seizure type that has been reported in patients with MELAS, in addition to other seizure types. It has also been seen in some patients with electron transport chain complex III dysfunction. This is found almost all the way down on the page of this link: http://www.epilepsy.com/epilepsy/epilespy_mitochondrial_disease.html Glossary definition: Epilepsia partialis continua: A continuous or prolonged partial seizure that causes contraction of the muscles; usually restricted to the muscles of the face, arm, or leg; usually not associated with impairment of consciousness. With your having asthma and epilepsy, this could be a possibility: http://professionals.epilepsy.com/page/pulmonary_resp_insuf.html This is about halfway down on the link below it: Motor seizures: These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements. The person may or may not be aware of these movements. http://www.epilepsy.com/epilepsy/seizure_simplepartial.html I think this one gives a closer example of what you posted. http://www.emedicine.com/NEURO/topic653.htm Hope one of these help! -Spiz

Re: Re: Re: Re: Re: Re: Re: Re: Muscle twitches?

Submitted by gretchen1 on Fri, 2006-06-23 - 15:11
Verrry interesting you found all that which fits to a "T" and my "neuro" asked "is this sz activity"? Jerk. I think my scar is on the right effected side. I forgot left and rights after my head injury and I have incisions on both sides so I can't be sure. STarting twitchies now up into my thumb, fun trying to type, and I can't stop it. If I try like hold onto it, it goes into my wrist. It does eventually anyway. Then I loose ability to use hand. I wonder if by then my cognition is slipping - brain rot. I am obviously having problems now. Can't remember what I typed have to go back and re and re read. The added "feature of" of this damnable thing. Then it goes to other thumb or wrist, sometimes, not always. But it always goes up to my right side face eventually to Bell's residual side and "pulls" back on the contratures you know I have. I look like James Dean, partial smile or sneer. I don't care about that, but it starts hurting becuse it "beats". So why didn't my neuro say this as a ossibility? He was in a badmodd and he has no right, I pay for that appt whether he's and he OWES me a nice mood. So there. I have to travel hours to go to my epileptologist? Apparently. AND he put me on Trileptol and I'm so far not taking it. I ALREADY HAVE TAKEN IT. With horrid results. It is also a cousini to Tegretol XR which made me feel like I was walking on squishy springs and growing horrid paranoia. FINALLY AED pill makers are saying AEDs can give you psychiciatric effects. Just read something interesting in People about Keppra. If I can hold it together I am going to post it. Sorry, I'm twitching and know my cognition is not great. I'm typing slow. I called my pharm. He called my local neuro and questioned why I was being put on nTrioleptol. Because I'm having insominia. Well my husband is dying would HE have insomnia? I am SO ANGRY I COUOLD SPIT BLOOD. I asked my pharms's advice, take or not to take. He wouldn't say don't take, he said it's up to me if I want to "risk". NO. I don't want to go thru that hell again. And yes what is it about cracked ribs that makes every single body part hurt? I'm having to type with my keyboard on my lap. Can't bear tao type with it on the table, lifting my arms. Sheesh this hurts. Am I a woose? YES. I didn't use to be. I'm becoming pain phobic and I don't care how that makes me look. Quit pain pills tho didn't \help and made me funked. 2 cracked in 2 my back and I fell on my back last week and it still hurts. On top of that Tulip had hiccups for 4 hours yesterday and her wired together ribs from the MONSTERS that kicked her near to death are killing her. I'm still in a bad mood. Yes I have Ativan in pills and shots. Low doses help me unbelieveable versus 60mg ov Valium once that didin't touch me except for the next day when I felt like I'd taken an overdose of morphine, Valium on top of IV VErsed and Dilantin? But I'm afraid of developing a tolerance so I take it sparingly. TOO sparingly I'm told. But who will will it be building a tolerance? I haven't yet. Maybe I worry abouat nohting. I don't know. Man amI down. Sorry. Thanks so much for filling in the gaps of my NEUROLOGIST. I think I could practice neuro just as easily and BETTER than someand I trusted him so much. Foolish me. Have call in to epileptologist tho as I'mtwitching now, which means my fear is growing now, guess I should hit the Ativan and blow the rest of my day before it goes to my face. ThatI hate worst of all. Tulip is alerting. I should listen. Thahnk you mucho gracias. Sorry if this a mess. I am trying. I hurt and my mind is fuzzy. Gretchen

Re: Re: Re: Re: Re: Re: Re: Re: Muscle twitches?

Submitted by gretchen1 on Fri, 2006-06-23 - 15:19
Volhommen till Svenska flicka (ore Mormor) Gretchen the freakemigrant

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