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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).

Essential Palatal Tremor (also known as Essential Palatal Myoclonus)

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Unread 10-17-2012, 03:03 PM   #1
americaninberlin88
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Default Essential Palatal Tremor (also known as Essential Palatal Myoclonus)

Hi! I am new to the site and I joined because I have recently become aware that the clicking and crunching sounds I hear constantly are the result of a movement disorder related to my soft palate. My doctor thinks I have a palatal tremor. I was just wondering if anyone has any experience with either essential or symptomatic palatal tremor (formerly known as palatal myoclonus) and treatment for such. I also have Eustachian Tube Dysfunction and due to frequent air travel and recent ear drum rupture due to infection, I have ear tubes in my ears. These make the clicking caused by the tremor much worse and it drives me crazy! I am just looking to find other people who have this, as I understand that is quite rare.
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Unread 12-05-2012, 02:23 AM   #2
Myoklonie
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Default I am living in germany an d I have middle ear myoklonie and pallatal tremor

Quote:
Originally Posted by americaninberlin88 View Post
Hi! I am new to the site and I joined because I have recently become aware that the clicking and crunching sounds I hear constantly are the result of a movement disorder related to my soft palate. My doctor thinks I have a palatal tremor. I was just wondering if anyone has any experience with either essential or symptomatic palatal tremor (formerly known as palatal myoclonus) and treatment for such. I also have Eustachian Tube Dysfunction and due to frequent air travel and recent ear drum rupture due to infection, I have ear tubes in my ears. These make the clicking caused by the tremor much worse and it drives me crazy! I am just looking to find other people who have this, as I understand that is quite rare.
Hello,

I am sorry but my english grammar is not perfect.Im living in germany and I had middle ear myoklonie since 6 months . Both tendon are cut tympani and m. stapedius.
Now I get Botox in my soft palat because of pallatal tremor.
I have a high frequent clicking in my right ear. And I have Autophonie
I get now Valproin Drugs 1000 mg a day
Please contact me
best regards
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Unread 12-30-2012, 11:57 PM   #3
americaninberlin88
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Default Deutsch?

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Originally Posted by Myoklonie View Post
Hello,

I am sorry but my english grammar is not perfect.Im living in germany and I had middle ear myoklonie since 6 months . Both tendon are cut tympani and m. stapedius.
Now I get Botox in my soft palat because of pallatal tremor.
I have a high frequent clicking in my right ear. And I have Autophonie
I get now Valproin Drugs 1000 mg a day
Please contact me
best regards
Sprechen Sie dann Deutsch? Wie ist Ihre Erfahrung mit Botox? Meine HNO-Arzt hat es mit angeboten, aber da ich Hobby-Sängerin bin und es meine Stimme stark verändern kann, habe ich dagegen entschieden. Wie ist Ihre Erfahrung mit Valproin? Wo in Deutschland wohnen Sie? Ich habe auch manchmal Autophonie, was von meiner starken Tubenfunktionsstörung kommt. Manchmal öffnen meine eustachische Röhre zu viel oder zu lange, was zu der Autophonie führt, aber meistens öffnen die nicht wenn die öffnen sollen, z.B. im Flugzeug. Deshalb habe ich seit August Luftröhrchen in beide Ohren. Haben Sie schon wegen der Gaumensegelmyoklonus ein MRT gehabt?
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Unread 12-31-2012, 12:57 AM   #4
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Quote:
Originally Posted by americaninberlin88 View Post
Sprechen Sie dann Deutsch?...
No sorry! I have used Google Translate service to put your post into English for others to read because I'm not sure that many of our members here speak German. If you don't speak English, maybe you could use a translation service such as Google Translate yourself before posting to make it easier tor others to understand.

Then speak German? What is your experience with Botox? My ENT doctor has to offer, but since I am a hobby singer and it can change my voice strong, I've decided against it. What is your experience with valproic? Where in Germany do you live? I also sometimes autophony what comes from my strong tube dysfunction. Sometimes open my Eustachian tube is too much or too long, leading to the autophony, but usually open not open if you want, for example, the plane. Therefore, I have since August air tubes in both ears. Have you had an MRI because of the Gaumensegelmyoklonus
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Unread 12-31-2012, 07:23 AM   #5
americaninberlin88
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Originally Posted by Koala77 View Post
No sorry! I have used Google Translate service to put your post into English for others to read because I'm not sure that many of our members here speak German. If you don't speak English, maybe you could use a translation service such as Google Translate yourself before posting to make it easier tor others to understand.

Then speak German? What is your experience with Botox? My ENT doctor has to offer, but since I am a hobby singer and it can change my voice strong, I've decided against it. What is your experience with valproic? Where in Germany do you live? I also sometimes autophony what comes from my strong tube dysfunction. Sometimes open my Eustachian tube is too much or too long, leading to the autophony, but usually open not open if you want, for example, the plane. Therefore, I have since August air tubes in both ears. Have you had an MRI because of the Gaumensegelmyoklonus
Actually, I am a native English speaker, and only posted in German to respond to the post from Myoklonie. Had I found a private message tool (which I am sure there is, but can't seem to locate), I would have sent the message in German to Myoklonie directly. Allow me to translate my original German message more accurately:

Then do you speak German? What is your experience with Botox? My ENT has offered ito me, but since I am a hobby singer and it could change my voice, I've decided against its. What is your experience with valproic? Where in Germany do you live? I also sometimes have autophony, which is a symptom of my extreme eustachian tube dysfunction. Sometimes, my Eustachian tubes open too much or for too long. leading to the auto phony, but usually they do not open when they need to, like on a plane. Therefore, I have had ear tubes in both ears since August. Have you had an MRI for the Palatal Tremor?
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Unread 12-31-2012, 09:04 AM   #6
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Thank you, AmericaninBerlin88, for helping myoclonie with her
post and language.

I am sure she feels less alone. And thank you for the English translation to help the others here understand.
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Unread 01-02-2013, 03:10 PM   #7
earmom
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Default palatal myoclonus

Quote:
Originally Posted by americaninberlin88 View Post
Hi! I am new to the site and I joined because I have recently become aware that the clicking and crunching sounds I hear constantly are the result of a movement disorder related to my soft palate. My doctor thinks I have a palatal tremor. I was just wondering if anyone has any experience with either essential or symptomatic palatal tremor (formerly known as palatal myoclonus) and treatment for such. I also have Eustachian Tube Dysfunction and due to frequent air travel and recent ear drum rupture due to infection, I have ear tubes in my ears. These make the clicking caused by the tremor much worse and it drives me crazy! I am just looking to find other people who have this, as I understand that is quite rare.
My son was diagnosed in 2010 and has suffered since 2009 with palatal myoclonus. After years of clicking, pain and occasional popping, we can see the temors on the roof of his mouth in the back just below the dimples on both sides. I need to use a flashlight to see it and he cannot see it on himself due to the location. We have seen multiple neurologists, ENT, tic specialists, movement specialists, & several acupuncture professionals. This is NOT a tic. We have tried numerous drugs, acupuncture and most recently surgical Botox of the soft palate. I will say that this is a debilitating disorder and my son has missed so much school in the past few years. Living in chronic pain is very difficult. We have gotten some relief from Clonazepam at very low doses (higher doses have side effects), acupuncture (very little relief to date), and the Botox (side effects include popping with pain, temporary speech impairment and liquids temporarily coming through his nose when drinking). We only did one side of the palate with Botox and this has given him more relief than anything to date, but it is not a perfect fix. The pain continues. We have also read about radio frequency ablation (which causes permanent destruction to the palate), neural therapy (only makes sense if you have had previous surgeries) and facial cranial reconstruction but have been advised against these by medical doctors. Currently he is also being seen by a professional who can help him with pain management. DISTRACTION seems to be the key to sanity for now. We still may try neural therapy as our next step because when you are in need, you can't give up!

It has been very hard educating those around us, especially those in the school system. We must advocate on behalf of our child that he is not crazy and does not suffer from anxiety. This is so rare that no one has ever heard of it. Stress, illness, loud noises, alarms and any change in ear pressure (blowing an instrument, cold weather outside or airplanes) make this disorder worse for my son. The clicking and pain are heart breaking. I would recommend the material on the National Institute of Health (NIH) website for purposes of educating others around you. It is a reputable organization providing details regarding all forms of myoclonus. I hope that my years of research benefit some of you out there. We will continue to search for a cure and I will continue to post as I get new information.
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Unread 02-24-2013, 02:37 PM   #8
Myoklonie
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Default Middle ear myoclonus and palatal tremor

Quote:
Originally Posted by americaninberlin88 View Post
Sprechen Sie dann Deutsch? Wie ist Ihre Erfahrung mit Botox? Meine HNO-Arzt hat es mit angeboten, aber da ich Hobby-Sängerin bin und es meine Stimme stark verändern kann, habe ich dagegen entschieden. Wie ist Ihre Erfahrung mit Valproin? Wo in Deutschland wohnen Sie? Ich habe auch manchmal Autophonie, was von meiner starken Tubenfunktionsstörung kommt. Manchmal öffnen meine eustachische Röhre zu viel oder zu lange, was zu der Autophonie führt, aber meistens öffnen die nicht wenn die öffnen sollen, z.B. im Flugzeug. Deshalb habe ich seit August Luftröhrchen in beide Ohren. Haben Sie schon wegen der Gaumensegelmyoklonus ein MRT gehabt?

Hallo,
entschuldigen Sie bitte, dass ich nicht auf ihre Fragen reagiert habe.
Ich habe diese Seite lange nicht besucht.
Ich bin zur Zeit im Krankenhaus und wir werden die Tubenmuskulatur entfernen.
Das Valproin hat eine leicht positive Wirkung gehabt.
Ich habe vor ca 6 Wochen 30 U Botox gespritzt bekommen.
Es hat das Geräusch tatsächlich viel leiser gemacht.
Das Botox sollte nur von einem erfahrenen Arzt gespritzt werden.
Fahren Sie nach Göttingen oder nach München Neurootologie.
Es gibt nur wenige Ärzte mit Erfahrung auf diesem Gebiet.
Die Autophonie ist immer mal mehr und mal weniger.
Ein MRT, Lumbalpunktion etc. habe ich gehabt.

Die Ursache wurde nicht gefunden.
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Unread 03-20-2013, 09:58 AM   #9
earmom
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update for PM: research FCR, functional cranial release. Dr. John Lieurance works on all movement disorders and he actually got the clicking to stop!!!!! My son still has pain and we are working on that but it is 100% better than before now that the clicking has subsided. He still gets clicking but only when he swallows, sneezes or yawns. No more constant over 100 clicks per minute in each ear. One LARGE step in the right direction. No drugs...please check it out. Also we recently became aware of a large group of PM suffers on FaceBook. Check it out.
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Unread 04-21-2013, 01:37 PM   #10
americaninberlin88
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Default Just seeing this now

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Originally Posted by earmom View Post
update for PM: research FCR, functional cranial release. Dr. John Lieurance works on all movement disorders and he actually got the clicking to stop!!!!! My son still has pain and we are working on that but it is 100% better than before now that the clicking has subsided. He still gets clicking but only when he swallows, sneezes or yawns. No more constant over 100 clicks per minute in each ear. One LARGE step in the right direction. No drugs...please check it out. Also we recently became aware of a large group of PM suffers on FaceBook. Check it out.
Hi earmom!
Thank you for sharing your story. I am so glad you found a treatment for the clicking, although I can't imagine how it would be to also have pain. I am lucky not to have anything but clicking and a feeling of movement in my mouth. I hope your son can find relief. I will definitely check out the Facebook group and the FCR and see if it will work for me.
- Alyson
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