My Myoclonus...

I am not sure how to begin my story...

First I am 33 years old and have been battling Myoclonus since I was 24.

In the spring of 1998 I got very sick and had a lot of the symptoms of Lyme disease but was never diagnosed with it. Even though I did find a dead tick on my scalp a short time after the illness started. I had just had a baby and it was shrugged off as fatigue.

About 3 months after that I tried marijuana for the first time (after a particularly terrible month…I know it was stupid but you live and you learn!) and that is when I had my first major myoclonic attack. My entire body contracted into the fetal position (talk about a buzz kill!) and took about 20 minutes to relax. After that the tremors and stuttering started. I assumed it was a reaction to the pot and figured it would go more pot for me, problem solved.

Welllllllll…Not quite! After 2 days of constant tremors and stuttering, I went to my GP and was told it was a reaction to the Prozac I was taking for manic depression. Maybe I had unknowingly OD-ed on it (WHATEVER !! I know how much I take and when I take it!) would go away after a few days. My first "shrug off".

After a month of this I went to a neurologist who must have been a total idiot. He did no testing at all, just asked a few questions and prescribed Klonopin…developed hives. No help, "shrug off" number 2.

Month 2 rolls by so I go to another neuro and was told it was all in my was psychological...I was making this up??? Gimme a freakin’ break!!! "Shrug off" number 3.

After 5 months I went to a specialist/neuro on movement disorders. Finally someone believed me…believed I had not overdosed and believed I was not making it up!!!

First all the testing started. You all know what I am talking about. It all took a while but FINALLY I knew what I had.

It was Myoclonus...

Myo-WHAT???? WTH is this? Why me? What happened??????

We are not completely sure what caused it and I really don’t want more poking and prodding to figure it out. I just want it better…fast!!!

I started drug therapy and have run the gamut of them all. Depekote--hair loss...5-HTP--puking my guts out...benzodiazepines--hives....the list goes on and on…

I am now taking 450 mg of Effexor XR, a multivitamin, Vitamin E, and 2400 mg (600 mg 4x daily) of Neurontin and the attacks are somewhat better. I still have a couple a week but they aren’t as severe as they were before. The feet are still cold and the extremities still tingle.

I think the worst part has been the weight gain. It seems every drug you try has weight gain as a side effect. Has anyone else experienced this? I have consulted my specialist and he told me I have pretty much done all I can as far as diet and exercise. I watch my carbs and force myself to walk 2-3 times a week for about 20 minutes. Some days I can do more and some days I do less. It’s either tremor and contract or get as big as a house. It’s a total double edged sword.

I miss driving, working and doing the things I used to do with my children. I can’t do a lot of walking so if we go somewhere like an amusement park or fair…etc; I use a wheel chair and a cane. I try to push myself to the limit on days I feel good but I pay for it in the end. Everything is a struggle when I am in the throws of an attack….eating, cleaning, bathing…and it seems no one understands. It’s so embarrassing to be at a restaurant and be shaking so bad, my husband has to help me eat.

Just because I look healthy on the outside, they think nothing is wrong with me. It is an embarrassing disability for me. Would it be better if I drooled, was pale and gaunt and looked like walking death?

Anything can set it off! A thunderstorm, someone scaring me, stress, the phone ringing, a car back firing…I just never know. I can feel one happening but haven’t mastered stopping it. Boy won’t that be great when I do. I feel everything start to tremor…my outsides and my insides!

I do have a very hard time sleeping and sometimes go a couple of days without sleep. Does anyone else have this problem? I took Remeron for awhile but it didn’t help much. I have also been diagnosed with sleep apnea and use a C-PAP machine but it’s still hard to sleep.

My attacks are pretty scary looking…it starts off with the contractions of all my muscles. My toes curl under, my legs contract upward, my fingers curl into my palms…then the tremors take over. Once they start, I am totally paralyzed and lose control of my body. I am totally dependant on my husband to get me through it. If he isn’t there when it happens, it’s a nightmare and 10x times worse because I totally freak out. I have panic attacks and hyperventilate. Thank god my kids are in school and don’t have to see it. Once he calms me down by massaging my legs, arms, etc; rubbing me down with cold water, talking soothing to me, playing soft music…and all the muscles relax and the tremors subside, I fall into a comatose like state. I can hear him talking to me but can’t respond, I can’t focus my sight to find him, my breathing gets really shallow and I go limp as a noodle. Eventually I come back but it last about an hour from start to finish. It leaves me completely exhausted and I am down and out for the rest of the day. It does seem most of my worst occur in the middle of the night.

I feel robbed. It is depressing. I am tired of defending and explaining to people. I am mad as hell. I am tired of hurting. However, I am dealing with it and with the support of my wonderful husband, my kids and my doctor I will make it through. I just wonder what this will lead to in the future….It truly scares the hell out of me!

Thanks for letting me vent! LOL!

GoneCrazyBBL GoneCrazyBBL
31-35, F
10 Responses Oct 1, 2008

wowww its a true hell, i am here in this chat for ask you many things, i have myoclonus about 5 years, but is just when i go to bet, do you feel the same? or yours is wors? mine its frustration!! when iam starting sleep pum!!!! JERK

Wow! You really are going through hell! I am so sorry to hear what you are going through! I have the attacks of sudden muscle jerks: head, arms, legs, etc, making life very hard sometimes, too. I have been taking Seroquel for over 20 years, and I am sure that caused it. I hate my body sometimes! I cannot do much, without having to lie down on my bed and just jerk and jerk. It is so frustrating.

thank You for ur story....i am headed to my second neuro soon. i have a small tumor in base of my brain, but no one wants to entertain the idea that this may be the cause of my myoclonus. mine gets worse every day. the reactions to stimuli drives me nuts!! it is hard for my family to understand sometimes. when i have an "episode" it may take days to recup. i have even developed a bit of a verbal "tic". anyone else have that?? i just want my old life back.........................

I was jut diagnosed with this today. They are doing an EEG, and MRI on me next week, but my doctor seems to think it's "psychological." Does that mean I'm crazy? That it's all in my head, cause it sure don't feel like. I feel like walking death.

Get another doctor. The first neuro told my husband the same thing and referred us to a psychiatrist... and we went to see her. She did questionnaires and an intensive interview and did not find him to have any mental/personality/psychological issues. She said to see an infectious disease doc and get checked for lyme. Glad we saw the psychiatrist after all, she did her job well; she actually listened, unlike the neurologist.

I have been to many neurologists, and talked to my psychiatrists about it. All they do is say it's just in my head. It's their way of copping out; they don't have to do any thinking to figure out what we actually have if they say this. They can just say it's "psychological." Especially is we're women. But it is real! My head, arms, and legs jerk out of control, and not when I am upset, so it can't be "psychological."

I understand exactly how you're feeling. I am in the same spot, can't sleep, gaining weight, can't dance or do anything. I am thinking and praying for you.

I believe that my barely 42 yr. old daughter has unfortunately come down with Myoclonus ! Dr. ...Neuro. still has quite a lot of tests to be done on her, this might not ONLY be Myclonus, we'll know for sure when all tests are complete. I want all of you so afflicted with this disorder to know that I'm praying for all of you and even ones who has not responded on here ! I can surely recommend that you PRAY! PRAY! PRAY! God Bless all of you ! He knows what you're struggling with !

There is no such thing as "only myoclonus" because myoclonus is not a disease, it is a symptom of something else and can be caused by many things. When they don't know what that something is, they call it idopathic or psychological.

I understand your pain and embarrassment. I'm not even twenty yet and I've had myoclonus for almost three years. For a long time no one could figure out what the problem was and I was even told several times to 'stop faking it'. I have a hard time keeping a job because I'm so ashamed of the symptoms. Any time someone touches me it sets off an attack, because of this I am not able to keep a relationship with anyone and have lost almost all of my friends because they are 'too embarrassed to be seen with me'. I remember before this started, thinking that I have the rest of my life to live and thrive and I would be able to go to college and become a pastry chef like I've always wanted. I am not able to go to school and can't even properly control a piping bag, so there goes that career option. I'm sorry to hear that you also suffer from this, but I am also glad to know I am not the only one out here.

This is caused by antidepressants. It's little-known because nobody attributes it to antidepressants. It's called tardive myoclonus. It can start 6 or more years after apparently side effect-free antidepressant use.<br />
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Prozac caused it in me. I tried to quit but had horrendous withdrawal, went back on it, and in 3 weeks I started ******* all over the place. It's been 2 years and I still have it.<br />
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This is common. You can see that by searching for "*******" or "myoclonus" on this forum: paxilprogress (dot) org.

I just felt compelled to write you to let you know you are not alone .I to am dealing with this myoclynosus,and is no picnic you dont know when or where its going to effect you.Also when you said its hard to explain time after time I have tried to let people realize what im going through and because I appear to be healthy they assume it is no big deal.I only wish to those who think that could only be in my body for 1 day.Alltough I have back problems to and I am on viccaden and baclofen adn for some reason they seem to also help me with the spells to they dont take the pain and spasms completely away but they help reduce the severity of them.I was so happy yet so sad for you to know that there is other people out there. I could of written your letter mysef per batem.When my husband and I read it it made me cry to know I wasnt alone,nuts or anything else .The jolts I feel when loud booms or if I get scared suddenly send me off into a shocking sensation in my body which then results to muscle spasms and so on.I to have tried pot ,But I have realized that if you smoke it and go to bed right away you will sleep longer.Allthough here it is illegal so that is not a choice I can use.I wish you the best and thank you for sharing.

I have myoclonus and most of the "usual" anticonvulsants didn't work with me. Finally, I found Topamax, which worked for awhile and actually has a weight LOSS effect, but its side effects were so strong (in the negative sense) that the doctors encouraged me to try something else, so I switched to Zonegran, a sister drug. However, I'm so strongly effected by medications in general that the neurologist felt it would be better for me to just "ride out" my episodes instead of taking anything (my myoclonus tends to be somewhat milder in manifestation).<br />
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I also have a hard time sleeping now, but haven't found any solution for it yet..