Myoclonic seizure activity.

[xxRinxx]

I've only recently discovered that I have Myoclonic jerks due to a discussion on a Dysautonomia forum. For a long time I always thought I was just..twitchy. My parents thought as much too. I had been doing the Myoclonic jerks since even before I became direly sick.

Does anyone else experience Myoclonic, or perhaps other seizure activity? I had the flashy EEG done, and while I didn't have a seizure during the test I definitely had an adverse reaction and the test had to be stopped. Doctors really didn't address it though, which was annoying.

Like most with Myoclonic jerks I only get them when I am very tired, or waking up/going to sleep(also i have noticed over-caffeinating triggers some too). I don't have them enough to warrant medications, but it is something I found interesting enough to see if any others experienced these.

 

[Fuzzyhead]

Yes i get these but usually when i am having a bad spell or over tired. Just as i am nodding off my arm or leg jerks right up. It does this alot until i eventually fall asleep.

 

[Valentijn]

Myoclonic jerks usually don't involve seizures, unless abnormal brain waves are happening during the jerking.

 

[physicsstudent13]

it can be a sleep disorder which causes brain damage

 

[melamine]

I occasionally get them - at the waist - as I am dropping off to sleep. They first appeared during a very serious infection that lasted many months. It was during that time that they were quite frequent.

 

[physicsstudent13]

I really wish that this could be cured with antibiotics?? I thought I had a stroke I was so brain damaged and foggy and couldn't speak and my brain was so slow
Yes it's really bizarre right when I'm falling asleep I start twitching and wake up. is there any treatment for the seizures? I don't know if it causes my desaturations and hypoxia though. I'm trying zinc and klonopin/gabapentin.... these are 2 seizure medications and I feel so much better and clearer today. gabapentin increases slow wave sleep. caffeine decreases oxygen to the brain

so hypothetically the seizures could be caused by an infection of the brain?
I tried rocephin and that seemed to help

 

[melamine]

is there any treatment for the seizures?

@physicsstudent13 - @Valentijn said that they are not seizures. Although this description mentions some forms of epilepsy," it is not a cause of most.

"Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis, Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension." http://en.wikipedia.org/wiki/Myoclonus

If you follow the link to "serotonin toxicity" and similar neurotransmitter toxicities, you will see symptoms that sound familiar. It may be possible that those of us whose metabolism tests normal in most or every respect are experiencing toxic levels of neurotransmitters either transiently or functionally in a chronic way as a result of some kind of "gating" abnormality, but that is sheer speculation on my part.

I've read that Klonopin is prescribed for seizures and panic disorder, but some people have found it to be helpful for stress-related symptoms - stress meaning physical, mental, psychological.

 

[justy]

I have this myoclonus, but mine is not sleep related - it happens when I am awake and is large body jerks. Happens more when I am more ill and less when I am more rested. It is usually always on the left side of my body and involves my leg and or arm jerking up. My mum says it looks like I am waving at someone in the distance.

Sometimes it happens repeatedly, many times a day and some days I don't get it at all. I also have weird feeling in my brain and short absences - but not always at the same time as the jerks. When I discussed this with KDM last year he felt that I may be having seizures - many small ones a day - and felt it was linked to brain inflammation from the bacterial infections I have.

I have also recently developed a lot of shaking in my hands and sometimes my head shakes a bit too. Was able to go out to lunch today with my husband and I couldn't get the peas to my mouth without them all being shaken off the fork. I had to concentrate on the plate and my fork and the peas really hard to control the shake and get the peas in my mouth. The waiter was watching me and came over to see if everything was all right with my food!

Last month my GP noticed it for the first time and asked me if I wanted to see a neurologist as she didn't believe they were an M.E symptom

 

[Marco]

As well,as when lying down I frequently get these while sitting at the computer. It feels as if I was about to fall off the chair and the jerk pulls me back. Maybe as per @justy - short absences?

 

[melamine]

it happens when I am awake and is large body jerks

@justy - Mine happen when I'm awake but just as I am dropping off to sleep. Huge jerk at waist.

I have also recently developed a lot of shaking in my hands and sometimes my head shakes a bit too

I get tremors also. If they begin at any time after starting new meds, it can be an indication of a toxicity/dosing-related problem.

Last month my GP noticed it for the first time and asked me if I wanted to see a neurologist as she didn't believe they were an M.E symptom

I wouldn't say tremors are not a symptom of ME for those of us neurologically affected. It is definitely on the spectrum of other neuropathic symptoms that in my experience, seem to respond to whatever helps the condition in general at the time. One thing that can trigger mine is electromagnetic exposure. One of my early triggers was high concentrations of antioxidant supplements, before I learned to avoid it.

 

[justy]

Mine are definitely not hypnic jerks - I am fully aware and awake, not overly relaxed when they happen. My whole arm flings up in the air and my leg goes up at the knee. Occasionally an involuntary sound comes out f me at the same time.

 

[PNR2008]

I have head tremors that get worse with stress and caffeine. Since I go to a movement disorder neurologist for botox for migraines, we have tried it for the tremor. It stops the movement but getting Botox in the neck is tricky and it's taken 3-4 times before we got it right.

Getting shots in the neck can constrict muscles in the throat which makes it difficult to swallow and feels like choking. This is not good and very scary. Lately I've been jerking almost like an involuntary movement.

My brain scans show epileptic spikes but I have never had a seizure. Of course migraine headaches with aura are seizure-like and I do have ischemic changes on MRI due to migraines.

Oh the joys of having ME for 27 years. I for one am pretty disgusted.

 

[physicsstudent13]

@physicsstudent13 - @Valentijn said that they are not seizures. Although this description mentions some forms of epilepsy," it is not a cause of most.

"Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis, Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension." http://en.wikipedia.org/wiki/Myoclonus

If you follow the link to "serotonin toxicity" and similar neurotransmitter toxicities, you will see symptoms that sound familiar. It may be possible that those of us whose metabolism tests normal in most or every respect are experiencing toxic levels of neurotransmitters either transiently or functionally in a chronic way as a result of some kind of "gating" abnormality, but that is sheer speculation on my part.

I've read that Klonopin is prescribed for seizures and panic disorder, but some people have found it to be helpful for stress-related symptoms - stress meaning physical, mental, psychological.

I had really good clarity on gabapentin+klonopin on the first day I restarted the medications with the asv machine. But I don't think the sleep was deep and I didn't feel really energetic throughout the day but I could stay up.
But on day 2 of the combo I couldn't sleep on the machine and I woke up really spacy and cognitively impaired on 600mg of gabapentin, so maybe I should go with 150mg? I didn't have really deep sleep though maybe because of the klonopin erasing my stage 3 sleep.
when I take trazodone I seem to have deeper sleep and wake up kind of breathless like my lungs had worked a lot after exercising

 

[melamine]

@physicsstudent13 - It will be a matter of trial and error since everyone's metabolism and biological terrain is different. Researching other peoples' experiences with each of the drugs often helps and you may want to experiment with different dosing schedules as well as doses of whatever you decide to continue with.

You said you got a good effect initially from Klonopin + gabapentin, but the symptoms you experienced the second day you took them seemed to be those of gabapentin. I myself have experienced a very good effect initially from something that turned out to be harmful when I took it after that. One that comes to mind was a combination supplement: it contained some things that I believe were good for me and one thing that was not good at all. From your description I would question whether gabapentin would be useful at any dose.

The topic of this thread is myoclonus. You might want to post your medication and sleep questions on another thread where they will be found by those with similar questions and experiences with those drugs. I don't mind answering any follow-up questions but I lack experience with the drugs in question except for a bad experience with gabapentin.

 

[CantThink]

I suffer with myoclonus during sleep. I didn't know until I shared a bed with my mum. Mine is not as I fall asleep - I occasionally get the normal random jerk then. I used to sometimes share a bed until 2009, and no comment about it then, so this seems to have developed more recently (was noticed in 2013).

Since this myoclonus, I've developed what appears to be simple partial seizures during waking hours, but that's another topic. As yet I haven't seen a doctor about either issue. Like PNR2008, I've had M.E. a long time (25 years), and the daytime seizures has only become an issue in the last 6 months, so for me both the myoclonus and seizures seems to have been a progression/worsening.

 

[melamine]

Since this myoclonus, I've developed what appears to be simple partial seizures during waking hours, but that's another topic.

@CantThink - I also experience simple partial seizures of the kind that cause primarily psychic symptoms of a jamais-vu/deja-vu/future-vu feeling all at once, plus a mild sensation of weakness or near nausea. They're a little disorienting but don't last longer than 10 seconds or so. Maybe we've stumbled on something here!

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

Who is at risk for simple partial seizures?
"Anybody can get them. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumor but most of the time the cause is unknown."

I tend to experience a simple partial seizure not more than 3 times a year and have not found them to occur at the same time as the myoclonus (at the waist).

I have never tried to get mine diagnosed because they're impossible to diagnose because of their unpredictability, and because nothing can or needs to be done about them.

 

[CantThink]

@melamine

That's interesting that you get both too.

My simple partials are longer and more frequent. I had 2 last week, one the day after the other. I'm keeping a seizure diary in case I need to pursue help, although so far I'm just riding them out.

They originally started as 30-ish second deja vu, and would leave me feeling quite odd afterwards. This has now progressed to starting with the déjà vu where right at the beginning I can sense I am going into a seizure (I guess this sensation is part of an aura or something). Once that passes I get this weird feeling that I can't describe (maybe like a feeling of everything slowing down, a bit tunnel like). I'm stuck in this thought or action - so words spoken, action done, scene of a programme on TV - I feel so strongly that it's all happened before, except I've never seen the scene before or whatever. So it seems so familar and I can't escape the focus of my brain on that it's all happened before. It's like my brain stops/gets stuck.

Then a tingling sensation occurs in my body, primarily in the top of my head. I can't seem to unfocus off the deja vu/remembering and I'm focused on that... At the time it all seems so clear, but once it's all over I can't remember a thing about it. Instead I feel very confused and keep trying to remember but can't. It sounds ridiculous, but it almost hurts that I can't remember as sometimes the deja vu feels so euphoric and nice I'm desperate to understand it.

The two last week were a minute or more each. In one my mum was around and she started talking to me, asking me something and while I could hear/see/feel her I couldn't speak to respond. I have read of a few others who cannot speak during it. After the second one I felt so exhausted it took me a good 12-24 hours to recover.

Interestingly I was concussed 3 separate times a child. Were you ever concussed?

I seem to have triggers - sleep deprivation, stress, my laptop and the TV. I think hormones might play a part too but I need to observe more as they may be occurring more just before my period. Do you have triggers or yours are all totally random? I think if they sleep deprived me I'd probably be more likely to have one if I were ever tested.

 

[melamine]

Once that passes I get this weird feeling that I can't describe (maybe like a feeling of everything slowing down, a bit tunnel like). I'm stuck in this thought or action - so words spoken, action done, scene of a programme on TV - I feel so strongly that it's all happened before, except I've never seen the scene before or whatever. So it seems so familar and I can't escape the focus of my brain on that it's all happened before. It's like my brain stops/gets stuck.

This entirely describes my experience! Sometimes a radio will be on and whatever is being said will be incorporated into the experience (I remember hearing that/being there before - but I couldn't have)

My simple partials are longer and more frequent. I had 2 last week, one the day after the other. I'm keeping a seizure diary in case I need to pursue help, although so far I'm just riding them out.

I have noticed a tendency sometimes to not have any for months, then have 2 within a week or two but have not noticed more frequency. I should start keeping a diary. I had started marking them on a calendar but then forgot about it.

At the time it all seems so clear, but once it's all over I can't remember a thing about it. Instead I feel very confused and keep trying to remember but can't.

I find it impossible to remember the details that I'd like to recall, but I remember the general sense. It is very hard to describe but you've described it well. Mine are "interesting" but because they make me feel slightly nauseous and out of this world, I am glad when it completely passes. I always find myself sitting for a few extra minutes to recover and then still feeling a little removed. I have a tendency to space out frequently - not in a way that I have no control over. It's just that my brain tends to be pulled into this decidedly unfocused, yet not unaware state of mind that takes effort to remove itself from.

QUOTE="CantThink, post: 552880, member: 12715"]Interestingly I was concussed 3 separate times a child. Were you ever concussed?[/QUOTE]

The only concussion I've had was last year, but I have had a couple of very bad infections where I experienced unmistakable symptoms of brain inflammation. One was in 1979 and the other was in 2007. I don't remember when the SPSs began but it's been years.

I seem to have triggers - sleep deprivation, stress, my laptop and the TV. I think hormones might play a part too but I need to observe more as they may be occurring more just before my period. Do you have triggers or yours are all totally random? I think if they sleep deprived me I'd probably be more likely to have one if I were ever tested.

I have them so infrequently that I have not had the opportunity to notice any potential triggers. It's possible I am experiencing a milder form of the same kind of brain activity in a way that's become part of the fabric of my existence and would be difficult to identify.

 

[CantThink]

I have noticed a tendency sometimes to not have any for months, then have 2 within a week or two but have not noticed more frequency. I should start keeping a diary. I had started marking them on a calendar but then forgot about it.



I find it impossible to remember the details that I'd like to recall, but I remember the general sense. It is very hard to describe but you've described it well. Mine are "interesting" but because they make me feel slightly nauseous and out of this world, I am glad when it completely passes. I always find myself sitting for a few extra minutes to recover and then still feeling a little removed. I have a tendency to space out frequently - not in a way that I have no control over. It's just that my brain tends to be pulled into this decidedly unfocused, yet not unaware state of mind that takes effort to remove itself from.

The only concussion I've had was last year, but I have had a couple of very bad infections where I experienced unmistakable symptoms of brain inflammation. One was in 1979 and the other was in 2007. I don't remember when the SPSs began but it's been years.

Oops just pressed send reply by mistake!

So I was going to say:

If you have a phone or tablet you could download a seizure diary app. That's what I have done. It's useful as it asks all the questions you want to remember the answers to like length of seizure, what were you doing/triggers, certain other things. I think it will be helpful for me to track their patterns and triggers - if there are patterns. I do also note 'seizure' in my physical paper diary too.

Do you think the space out could be absences? I have the same check out - mine comes with a stare - and they are brief maybe 10 seconds. I find it difficult to respond during them, but can if I make a massive effort to pull myself out and as they are brief this seems possible, whereas when I have a SPS I am totally stuck as it takes its course.

So like you said, about how they can be unpleasant and you are glad when it's over. The last one when my mum was asking me something and I couldn't respond, that was horrid and left me feeling vulnerable and out of sorts after. She realised I was seizing and was trying to get me to respond but I was effectively verbally paralysed, which was scary even though I was at home and she was reassuring me. Also before that one started I knew it was coming and I actually felt dread then.

Do you feel as if you are staring during SPS? I seem to be stuck in the 'tunnel', staring straight ahead. If I get another one where my mum is around I'm going to tell her to look into my eyes and see if there's anyone home as I don't know if it would look like I'm conscious (I am) or not. One of the reasons I am loathe to consult the GP is because I think describing them is so hard and they sound a bit ridiculous - I have had normal deja vu before and it was nothing like this.

It is really interesting though. How long have you had M.E.? Is your illness progressive? It seems good that although you've had the horrible seizures for such a long time, yours are staying infrequent and not getting worse.

 

[physicsstudent13]

I only get PLMD during my sleep or right before. So a high dose of gabapentin could damage your cognitive functioning? and how?
I was taking it at 600mg a day to increase the slow wave sleep but about 9 months later I realized it was causing these cognitive problems, feeling really spacy and kind of wired. I read one forum poster say that it turned him into a 'goldfish'. Has anyone been damaged by the drug?