Presence of myoclonus in your life

[Lisa]

After Replying to the above Poll can you please elaborate in regard to how often you suffer, your beliefs on What May Trigger it for you?

Thanks

Lisa

[Lexie]

I have been affect with this pounding from hell in my right ear since I was a kid (I am 44). It usually dogs me all night long. I have had several different suspicions of what causes this, including sinus problems, allergies, TMJ, neck problems and candida. Only recently I started wearing a plastic retainer (almost like a mounth guard)at night after having lower braces removed. I am shocked at the improvement I have had in the intensity and frequency of the nightly inner ear muscle spasms. I guess that would heavily suggest TMJ as being the main culprit. I think we probably just have a tendency to spaz and different things can contribute - even diet. I find sugar, wine, high carb diet all worsen the effect. Hopefully I'm on to something with the retainer and the TMJ.

[Lisa]

LEXIE, Congrats on finding something that works for you...

I myself am going to be off to the dentist in the next couple of weeks to have a retainer made for the TMJ to see it it helps.

Good Luck

Please Keep us UPDATED


Lisa

[Lisa]

Rico and I have been Discussing that long term exposure to noise may be a culprit in triggering the Stapedial Myoclonus Spasms,

Do any of you relate to this?

Lisa

[arthur]

I have never been exposed to lots of noise. Arthur

[Lisa]

Arthur, have you been exposed to noises such as louder ceiling fans, exhaust vents, loud computers? Loud car stereos during highschool? Because for me in retrospect, in 10th Grade, I was exposed to a loud stereo on the occasion, and recall it making me feel very nausiated, and dizzy... I don't have any idea if the two could be associated. But, its something that I do think about.
Does anyone recall a situation like this long before their symptoms became as problematic as they are today?


Lisa

[caroli]

Hi everyone! My name is Carol and I have been looking through your posts. I thought I would share my story as I"m sure many of you will relate. This is my first post so bear with.A year-and-a-half ago I was suddenly sticken with severe head and neck pain. I broke out in a rash(acne like) and my eyes and face were swollen. At times I was sick to my stomach, especially with all the high powered medicines they were giving me; even though they didn't know what they were treating. My ears were in so much pain it felt as if someone were sticking a hot poker in them. I also had pain in my back teeth. At one time, I lost the ability to swallow and could not walk.
I spent three months in and out of bed and going from doctor to doctor and er to er with no diagnosis. These are things they thought it might be. TMD,wisdom teeth impacted, a virus, stress, need tubes in my ears(even though I had no infection), internal shingles, arthritis of the TMJ, and herpes encephalitis. At the time, we were experiencing a high number of West Nile cases where I live.
My doctor (out of desperation) sent me to Mayo Clinic, who ran every blood test imaginable (except one). The tests showed I did have a herpes virus and my Lupus titer was slightly elevated(Hummm!)They said that meant I was just more susceptable to it. Not that I had it When I got back home I still was sick. I asked my doctor to run a West Nile test and a Lymme disease test. The West Nile came back positive but there is no way of teling if it was an old infection or recent.
After this , I was still having severe left ear pain, face and jaw pain, and down into my neck and traps. A TMD specialist made me a nine-hundred dollar mouth guard which has made only a slight improvement. The pain persisted. Every time I would swallow or talk or yawn I could hear crackling and popping in my ear. I was having bouts with dizziness. At times I could hear myself talking, like an echoing sound. It seemed that every sound was amplified and would cause more pain. When I had my hearing test at Mayo they said they I could hear a fly on the wall
I too, was diagnosed with fibromyalgia 6 years ago and thought it was related to that. I had injections in my neck muscles and temples which would take away the pain for a week or two. Thousands of dollars later I still did not have a diagnosis, nor did I feel better. Three weeks ago I was surfing for what could possibly be wrong with me when I came upon a neurology web site. It talked about stapedial and palatal myoclonus and I said I think that is what I have. I made an appointment at the University's Medical Center )3 1/2 hours away. My appointment was last Friday. I told the doctor my symptoms and eveything I had been through. He put his ear up to mine and told me to open and close my mouth. He could hear the popping. Then he told me to open my mouth, shined a flash light on the roof of my mouth and he could see my palate in a seizure. He said this is very rare. I'm the second person in his 17 years he's seen it with. He is investigating into what might have caused it. Possibly the West Nile or Herpes Virus. Both can cause left-over neurological problems. I had an MRI on Wednesday and still awaiting those results.
I found Cathy's post to be quite interesting, especially when she said she had Lupus and Fibro. The other thing I find strikingly similar, is when she talked about the possibilty of a drug causing this. I see she takes Xanax. This was the only thing I had been taking at the time this began. After it began, they had me on different steroid nasal sprays and prednisone??? Don't know if maybe there is a connection there.
My neuro has put me on the seizure med Dilantin. This is my 5th day and it usually takes 7-10 days to get good effects.(300mg) I am hoping and praying the medicine works for me. Good luck to all who are fighting this!