Thank you Colleen, for the link to the subgroups of Myoclonus. There are more types than I read of in the NIH . Very interesting.
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@bill54321 Bill I am sorry you are dealing with so much. At the same time, you and I are both in the medical field. I am a nurse of 26 years. I realize that medicine has not come anywhere near being perfected, and millions of conditions are still a mystery to doctors. I know that can be frustrating as a patient, but we do have to remember that doctors and research don't know everything. But this is a condition that, though limited, has medications that may help, and even some cases even Deep Brain Stimulation Surgery can help.
@bill54321 Hi Bill, I developed Exaggerated Sleep Myoclonus 10 years ago, as a reaction to a drug called Reglan. My jerks are mainly when falling asleep and waking, feeling like electric shocks. They happen in all my extremities and body-even my diaphragm/belly. I do have mild ones here and there while awake. I have been on Depakote and Klonopin, but in the last couple of years with very good control. I also realized many of my triggers were caffeine, stress, and lack of sleep. I know we can't get rid of these things in our life (I still like my coffee 🙂 ), but it helps to prepare you to know when you might have flare-ups. I was able to wean off of Depakote, and taper my Klonopin down to 3/4 of the dose and doing well. Jerks are still there but not any worse. I can honestly say I have gotten used to them, and I don't allow them to bother me anymore, and go on with life. Also, there are 8 different types of Myoclonus, you can find on National Institute of Neurological Disorders. But a neurologist is best suited to decide which one you have. Hang in there Bill! It will be ok! –Prayers for you.
Hi, I do have Myoclonus/Myoclonic jerks. Sounds just like what you are experiencing, but can't say for sure that's what you are having. It feels just like an electric shock going from my head then through my body, and either an extremity or my head my jerk quickly, like a tic. Happens mostly at rest or trying to sleep. I take medication for this, as it was a reaction to a medication I was on called Reglan. I would definitely ask if myoclonus/myoclonic jerks are what you are experiencing. Good luck, and if they continue laughing or don't take you seriously, then seriously look for another doctor. Prayers for you dear.
Thanks Jake! I take clonazepam for Exaggerated Sleep Myoclonus-.a reaction to a medication called Reglan. When I found out after all these years that a side effect or tolerance effect of Klonopin was……. myoclonic jerks, I realized it was time to try weaning off and see if was Klonopin or my body causing the jerking. Glad I did. It's starting to look like the original Myoclonus has resolved after all this time.
Hi @sears ,
I have been tapering from 1.25mg since September of last year. I decided to taper slower than the different tapers usually recommend. I have done great! I have had very minor symptoms, such as mild muscle spasms off and on, and some jerky movements (myoclonic jerks). But nothing that has changed my life. I am down to almost 0.25 where you are. Wonderful looking back that I am off 1mg! I am hopeful that I will continue to do well, but I will slow down a little more as I get close to the end. Praying you and everyone here does well!
@mamacita well said. I know many people truly feel they are helping, by recommending their ideas of how to cure someone with autism, without realizing they may be dangerous. After 14 yrs of living with an autistic son, I am thankful I didn't listen to all the ideas everyone wanted me to try on him. Autistic people are not guinea pigs, and I would not chance experimenting on anyone's child with the next "natural cure-all" Of course there are awesome therapies and some medications out there to help anyone on the spectrum, or any disability to achieve their potential. Speech therapy, occupational therapy, and ABA have helped our little guy progress so much, and at the same time, teach parents to always gently push them out of their comfort zone. I've also learned not to take silly comments, that we all hear over and over, about what we did to cause Autism, try this, try that etc, etc… to fall like water off a duck's back. Life's much better that way. 🙂