Your thoughts..?? Myoclonus?

Minkous

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Hey guys,

I am posting because I feel like my peers on this forum may be of more help than my doctors have offered thus far. I am a 27 yr old male. From what we know I starte having seizures almost 2 years ago. I started having a tonic colonic every other month. Then randomly I had a day where my dad had to revive me 3 times with CPR and I ended up having 18 seizures. After that things went back to a seizure every couple months... And we searched for answers from doctors and neurologists. They did the MRI and 48 hr EEG with 6 questionable areas in the test. They also claimed that I may be having psuedo seizures. So we have booked an appt next week for a month long study at Emory University's Epilepsy Center. My reason for coming to y'all, is that I've been having a lot of tics in my cheek wen I go out in the sun, and I have been bouncing my feet really bad for several months and never thought anything of it but my parents notice and always yell at me for bouncing my feet at church and in the car. And lately whenever I sit down to relax or lay down to sleep I will get random twitches in say my right butt cheek, then my elbow, then maybe it will jump to my calf, or my toes will curl up. The whole twitching episodes have been somewhat manageable by really making an effort to stop bouncing my legs but I have to really think about it and tense up my leg muscles to get it to stop. And seems like it's getting progressively worse over the past 2 weeks. I am reaching out for some help. From my research I am thinking I may be having myoclonic seizures to go with my provlem of TC's. What do you think.... Frustrated without a diagnosis?
 
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There are a lot of reasons you can have twitches and myoclonus, and seizures are one of many, and I'm sure you will get many thoughts from people on the site here. I have the same thing, and from my perspective I get two distinct kinds--the kinds of twitches I get when I'm fully relaxed, as you describe (could be relaxed on the couch, as I'm falling asleep, or during light sleep phases); and major twitches that are more like full body convulsions that happen when I'm fully conscious and not necessarily relaxed (and that pull me out of sleep entirely), that repeat over and over and often begin with an aura. The latter I know are seizures. The former? With my history of epilepsy, probably, but I really don't know, and I've never had either during an EEG. I just know the second kind are because I've had epilepsy for 40 years and know a seizure when I have one. Whatever yours are I would mention those to your neuro or epileptologist as well. I know what you mean about have tense up to make them stop. It seems like either the energy is going to be used somehow--through deliberate muscular effort, or non-deliberate twitching.
 

Tez_20

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Hi Minkous,
Years back I used to constantly keep rocking my legs when crossed and if I stood I would trot from one foot to the other, it did annoy my parents and I was tested for nerve damage twice and it was confirmed from the main CNS but there are different types of Tic which involve movement plus nerve damage....you may find the link below interesting on Tic's regarding epilepsy.

http://www.thebarrow.org/Neurological_Services/Epilepsy/204351
 

Minkous

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Sleep?

I went ahead and video taped myself yesterday while relaxing (which it wouldn't let me share my link to the video) but last night was pretty violent with all my muscle spasms and jerking when I tried to sleep now. I had my dad watch me in bed and he agreed that they are most likely myoclonic seizures (he's an RN in the hospital so I go to him for a lot of stuff).

My next question, if it is myoclonic seizures how do you fall asleep??? I'm waking up more tired and sore than when I went to sleep. I'm so sleepy after sleeping last night and napping today.

So what is the key to falling asleep?
 
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Mine eventually calm down enough that I fall asleep--those kinds usually stop during deep sleep cycles. But then I also have the other kind sometimes that I have all night during sleep and actually wake me. So when I'm having that seizure kind badly I don't get much sleep, at all, all night. You really should talk to your dr about it if you haven't--if they are seizures then your meds probably need to be adjusted--mine just went up as well. There are meds like clonazepam that make these stop for me--but these are addictive drugs and best not used for continual problems. If these really are seizures you would be best served to get them officially diagnosed and get your meds adjusted, changed, or added to to get them stopped.
 

Minkous

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Yea, I've been on clonozapam as well but it wasn't the golden ticket for me. I'm having like you, ones that they are lasting all night. And like you also said; I eventually fall asleep after a while but I am woken several times in the night by big tic. I literally broke down and was practically in tears last night cuz they wouldn't stop (and yes I'm admitting I cry). I'm going to emory epilepsy center next week, but I'm just trying to make it till then! I'm waking up in more pain and more worn out than wen I went to bed. Sorry I'm just rambling but im just so tired and want someone to just diagnose me and give me some kind of answer.
 

Zolt

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Hey Minkous,

I wonder if it happens to be from your med, the twitches? I remember having them regularly, once a day maybe, nothing major, just a twitch of a small muscle here or there for a little bit, or until it got to the point where i would have to will it to stop. But now i've haven't had them for a long time, and since you mentioned them, i just realized that fact. So i'm thinking for me it might of been one of the meds i was on that caused all that.

Hope you find your answers soon.


:piano: :pop:
 
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Yes I agree with Zolt--I just looked at your profile and see you are on Lamotrigine. I have two seizure syndromes (focal onset and generalized idiopathic epilepsy) and Lamotrigine can make generalized epilepsy like juvenile myoclonic E or any of the myoclonics worse. When I hit 600 mg of Lamotrigine (and when I was on Gabapentin, both of which can make myoclonus worse) I was jerking and seizing all night long until I went down and then off these drugs. DO NOT go off or down from this med without talking to your doctor but I do encourage you to call without waiting for your appointment. I know how you feel, I really, really do--I was in this myoclonus all night for nights on end on Lamotrigine and Gabapentin both, and most of last week as well as I am tapering off of Topamax. I get the tears. Please call and see if you can get guidance.
 
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One other thought--electrolyte issues can play a role as well in myoclonus, particularly magnesium and calcium. You never want to overdo supplmentation, but you may want to add a magnesium/calcium supplement before bed, or what has helped me is epsom salt bath for 20 minutes (magnesium sulfate). You actually absorb a fair amount of magnesium this way. Interestingly, magnesium sulfate is what they give you in the hospital after you have a baby if you are pre-eclamptic to keep you from having post-partum seizures (little factoid) :) Low levels of vitamin D can intefere with absorption of Calcium as well, and we tend to be low in D, so adding D3 is a good idea as well.
 

Minkous

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The doctor won't change my medicine because they will be taking me off all my medications cold turkey when I go in for my study at Emory, so I am just trying to make it one week. But today is rough, I'm having these episodes all thru out the day. AND worst of all, I feel just as sore as when I have a Tonic Clonic. I'm soooo tight thru my back and shoulders, and ESP my lower back.
 
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