Hello there,

My husband suffered Brainstem cell stroke located in the lower part of Cerebellum two years ago , he is 50 years old.
he was recovering, 3 months post his stroke while coming back from physio in hospital in his wheelchair, his mind /head "spun" for a fraction of a second and ever since then his health has been deterring.
He suffers from OCULO PALATAL MYOCLONUS, his eyes are closed all the time,he has double vision, central vertigo symtoms, tinnuts, internal body shacking, tremors, his body feels extremly heavy, no center of gravitation, double vision.
He is full of life and still exercises never mind the fact that each movement he makes his body sends very strong jolts/shocks .

I am looking for Chinese veteran of clinical and teachings of acupuncture.

Nothing is working in our favour.


Someone please if you know , please help us.

Thank you.

Hello Buttons,
My 18 years old niece has Myoclonus an we have an appointment for the botox injections in September. Did they help your wife at all? If its for a study could you please give me the details and I will make contact with the hospital. As you will no this is a very difficult situation and I sympathise with all of you. I can just imagine what you are going through.
I would love for you to respond.
Thanks Clare x

Like your wife, I too have myoclonus. Once I turned 31 I got essential Palatal Myoclonus. When I turned 35 I also got Spinal Myoclonus. They have no idea how or why I have this. I am now 36 with no sign of either disappearing. It is an aweful and very lonely condition to have. Only 1 in 2 million have Palatal Myoclonus and only 1 in 3 million have Spinal Myoclonus so it makes this burden even heavier for me. No meds have worked, but caused Nuerontin me to gain 30 lbs. The only thing that has worked like a God- sent are 2 things: Biofeedback and PT. The Physical Thereapist does cranical sayprial (spelling is wrong- sounds like that) work to slow my central nervous system. The root cause of myoclonus is the involuntary over firing of the neurons in your brain. Have your wife ask her doctor about these two things. Best wishes. Topsie

As I understand it, there are about 80 different drugs that can cause myoclonus....just for starters. I suspect that depending on where it is in the body it may have different aietiologies (causes and progressions).

Palatal myoclonus I am currently researching but have not had much luck contacting Topsie in this forum, who also seems to have it.

I understand that palatal myoclonus can be caused by some malfunction in the Guillain-Molleret triangle. The precipitating cause could be post infectious brainstem encephalitis. I have also read of a person having their palatal myoclonus cured after removal of adenoids...go figure!
Am still researching this.,

Walker its interesting you say your wife experienced this after epidural...since I recall my mother coming in to hospital to visit me after childbirth and noticing my entire body was shaking.. (BTW< my epidural only worked on half of my body and just prior to C-section incision and about to make the cut they checked if I could feel both sides, one side I couldnt ,the other I could ...then they must've topped it up. I swear I sensed an airbubble rising right up into my throat on the r side as they cut into me.

I think possibly injury, infection and medications all may play a role. Hope your wife finds some respite.
Topsie is correct that the cause involves overfiring of noeurons in the brain...but the reason could be because of some damage aeitrogenic/car accident/dental work & medications.

I had an accident last 06Sep03 in the Philippines which left me deaf and disabled, plus I suffer from what my first neurologist then termed it as Myoclonus from the brain trauma. My symptoms are:
I couldn't control my right hand
I couldn't control the tips of my fingers of my left hand (though I could control it)
I couldn't control my right toes
I'm sleep-deprived. => This is my primary concern now. I've read that it's symptom, not age, related. Most likely it has something to do with my accident. My current sleep now only averages 3 hours. I sleep at 8, then I wake up at 11. My target now is to normalize my sleep, for even if my eyes are really sore, I still couldn't fall asleep.
I feel if I'm prescribed the right muscle-disorder drug, I would regain control of my hands, and get adequate sleep.
Maybe a web can come up with a site where you can enumerate the symptoms, and the site can provide possible diagnoses, you print them out, and present it to your doctor.

I totally understand the lack of sleep. My ear popping - over the last 6 years and now my shoulder spasms over the last 2 years make sleeping difficult. I take a small bit of Valium and Toporol every night to sleep. ASK YOUR DOCTOR if these meds are right for you. This helps and my spasms are worse the next day if I don't take them. Neurontin is a horrible medicine! I was put on this for 4 years and it did NOT help! Best of luck. Topsie

Well, I know what worked for me. I discovered that it's the side effect of a muscular disorder drug.
That ear-popping must be agonizing. Glad to know you found some relief.

I am amazed to read this - I have myclonus and my neurologist tells me he doesn't know how it started - but I know - I had a fall that injured two disks and after that came the myclonus - I am sure of it. I take mirapex - sometimes it is gone for weeks thancomes back full force - the "jerks" are so powerful I almost fall out of bed. I am anxious to learn more about botox - I will do anything to relieve myself of this - it is ruining my life. I have no one to talk to who understands inclujding doctors.

After suffering a bad fall in April 2011 I kept complaining of a pinching feeling and loss of leg function. Although S1J's were identified as part of the issue, no one could tell me what it was. I was in alot of pain and nothing was helping with the inflammation.
On October 28 I had cortisone injections to both sides of my tail bone. It felt like they had hit a nerve but this was not the case. Within one week I was having violent jerking movements to my right side, mainly arm, torso and neck. The main base of the pain coming from the buttock area. Again, no one could make any sense of it and I was made to feel by one specialist that I was making it up.
I was put on large doses of morphine to combat the pain. It took 3 months to get in with a Neuro. It took him 5 minutes to identify spinal myoclonus as a direct result of the trauma from the fall. The cortisone was the catalyst, sending the nerves into complete hyperdrive.
He advised that all the codiene based meds I was taking were making the symptoms worse.
For two weeks now I have been morphine free and am on Clonozapam to control the tremors. The medication makes me very dopey and so far the jerking has been worse than ever lasting up to an hour. I am tired.
The neuro assures me that this will go away in time but cannot tell me how long. I am worried about being on these meds long term and am reading alot of stories of people who never really recover.
I feel really alone in this and it is made harder by peoples stares. My kids say I look like one of the Thunderbirds puppets!

HI Burnmyo
Thanks for your efforts. Sorry for the late reply, but for some reason when I try posting my posts don't send. Hope you get this one. I have had palatal myoclonus for almost 6 years and spinal myoclonus for 2 years. I have tried every type of medicine, botox etc you name it. My two suggestions for getting some type of relief are- biofeedback and accupuncture. But be VERY careful who you go to for accupuncture and be sure that he or she is VERY well trained in the authentic Chinese ways of accupuncture. Another thing- this is strange, but eating ginger - straight ginger- has been a little helpful and taking Slow Mag has also helped a little. Some times NOTHING helps and sometimes you get a tiny bit of relief. This condition has a total mind of its of own. I know what you are going through. I have been told there is "no cure" and "no cause", but I will NOT give up trying to help myself and others out there. Never give up! Best of luck. Please keep in touch. Topsie