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Spinal Myoclonus and Palatal Myoclonus???

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Old 08-15-2008, 07:36 PM   #1
Topsie
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Default Spinal Myoclonus and Palatal Myoclonus???

Hi I have both Palatal Myoclonus (only 1 in 2 million people have this) and Spinal Myoclonus (only 1 in 3 million people have this). I am searching and really hoping that there is someone else out there with these conditions with whom I can get some support and relate to about these difficult conditions. Please write! Thanks so much. Topsie
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Old 02-19-2009, 04:09 PM   #2
zoes_mom
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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, 05:06 PM   #3
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, 10:37 PM   #4
Topsie
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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, 08:04 PM   #5
angelrsd
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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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Old 03-02-2009, 07:12 AM   #6
blackcompe
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Quote:
Originally Posted by Topsie View Post
Hi I have both Palatal Myoclonus (only 1 in 2 million people have this) and Spinal Myoclonus (only 1 in 3 million people have this). I am searching and really hoping that there is someone else out there with these conditions with whom I can get some support and relate to about these difficult conditions. Please write! Thanks so much. Topsie
I was diagnosed with it last year. Basically, I get the crunching noises (rice krispies) in my middle ear and the plugged feeling that won't go away. Its extremely hard to treat. It started after my concussion in the Summer of 2005. I had a bit of luck with Effexor. My ear starting to unplug and stayed unplugged for a couple of hours after taking the medication, then it plugged up again. The medication hasn't worked since. I am hoping that it has something to do with migraines.
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Old 03-14-2009, 02:18 PM   #7
dlperkins
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Default palatal myoclonus

Hello,
I have Palatal myoclonus. I would like to chat with anyone who has it. I gave up on drugs. I'm not going to have surgery, so that leaves Botox injections. I've found someone who has given this in the tensor veli palatini muscle to relieve vibrations of palate, and therefore the ear clicking. I had one injection, which didn't work, but now they know a bit more where to put it, so I'm going to have another. Kind of working up the nerve to do it.

Diana
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Old 03-15-2009, 02:33 PM   #8
Sandel
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Default HI

I get a pop-pop-popping in my ears all the time, something betwen popping and clicking it drives me nuts.. I always assumed I have water or air pressure in my ears.. goes on most all day, my docs always "tisked" over it and ignored it or looked in my ears and said they look fine, also my left jaw locks and clicks.. gets very painful when that side of my face flares or I eat a steak.

I just tend to ignore it all and chalk it up to more inevitable ills since.. unless.. is there something that can be done for it?
Silence would be good.

be well,
Sandra
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Old 03-15-2009, 10:31 PM   #9
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Sandra, Have you talked to anyone about TMJ? Some of your symptoms sound a bit like that.
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Old 05-29-2009, 04:43 AM   #10
nays
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Quote:
Originally Posted by dlperkins View Post
Hello,
I have Palatal myoclonus. I would like to chat with anyone who has it. I gave up on drugs. I'm not going to have surgery, so that leaves Botox injections. I've found someone who has given this in the tensor veli palatini muscle to relieve vibrations of palate, and therefore the ear clicking. I had one injection, which didn't work, but now they know a bit more where to put it, so I'm going to have another. Kind of working up the nerve to do it.

Diana

Hi Diana,
I was diagnosed with palatal myoclonus 12yrs ago. I hav constant clicking in both ears, which can be heard by other people. I hav been on rivitrol, epilim and tegretol medication, none of which worked.
In the last few months the clicking has been painfull and therefore I am now looking inot more treatment options. Im considering the botox injections but am a little worried about the side affects. Is it true your speech changes??
Also do you know anything about the drug Trihexphenidyl?
Renee
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