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 away....no 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!) ...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 head...it 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!