Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-19-2009, 05:09 PM #1
zoes_mom zoes_mom is offline
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Default palatal myoclonus

Hi Topsie,
I also have palatal myoclonus and I have it for about 9 years now. It took me years to find out what was wrong with me and I still am working on finding a medicine to easy it up. I get frequent ear infections as well and the doctors seem to struggle to tell me why or if they are related. I found out today that they are not b/c i have also have TMJ. I am going back in 2 weeks to see what new medicine they are going to try me on. I understand exactly what you are going through. I am so glad that i know that someone else has it b/c i think sometimes people thought i was crazy when i told them i constantly hear a clicking noise. But i do constantly do hear the noise and i have been on numerous medicines, where some ease it up but nothing so far has made it stop.

Thanks,

zoes _mom
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Old 02-19-2009, 06:06 PM #2
buckwheat
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Hi Their,

Do you have a heart murmur?

Just a thought, have you had a strep throat infection in the last couple years or so???

I just hope you find an MD to get to the root of your problem. Much Love, Roz
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Old 02-19-2009, 11:37 PM #3
Topsie Topsie is offline
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HI Zoes mom
I am so glad to know that someone else has this condition. I have constant ear popping not clicking. My ears have been popping anywhere from 5 pops per minute to at the worst 61 pops per minute for the last 6 years. I have tried countless medications without success. I had botox shots in my palate and 1 of the 4 times was successful. I go to a nuerologist every month. I also have Spinal Myoclonus which causes the spasming of my neck, shoulders and arms. This has been devastating. Recently I have been trying Chinese herbal med drinks 2 times a day and very painful accupuncture 2 times a week. There is some relief in the popping with accupuncture. - When done correctly. The person needs to know the connection of the body with your palate and ears etc or it can be very bad- I had that experience as well. I don't suggest Neurontin as that only made me gain tons of weight. I am currently taking a small bit of Valium and Toporol at night for these myoclonus conditions. I hope you find this information helpful. I would really like to keep in contact so please feel free to write. Topsie


Quote:
Originally Posted by zoes_mom View Post
Hi Topsie,
I also have palatal myoclonus and I have it for about 9 years now. It took me years to find out what was wrong with me and I still am working on finding a medicine to easy it up. I get frequent ear infections as well and the doctors seem to struggle to tell me why or if they are related. I found out today that they are not b/c i have also have TMJ. I am going back in 2 weeks to see what new medicine they are going to try me on. I understand exactly what you are going through. I am so glad that i know that someone else has it b/c i think sometimes people thought i was crazy when i told them i constantly hear a clicking noise. But i do constantly do hear the noise and i have been on numerous medicines, where some ease it up but nothing so far has made it stop.

Thanks,

zoes _mom
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Old 02-20-2009, 09:04 PM #4
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hi topsie and welcome

i was reading about your conditions and i am so sorry for your pain . you are welcome here anytime
i have tmj on both sides so i kinda know about the popping for sure. i hope that you can find some relife

-carrie
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