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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS). |
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10-17-2012, 03:03 PM | #1 | ||
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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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12-05-2012, 02:23 AM | #2 | ||
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New Member
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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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12-30-2012, 11:57 PM | #3 | ||
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Junior Member
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12-31-2012, 12:57 AM | #4 | |||
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Legendary
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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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12-31-2012, 07:23 AM | #5 | ||
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Junior Member
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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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12-31-2012, 09:04 AM | #6 | |||
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Wisest Elder Ever
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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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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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01-02-2013, 03:10 PM | #7 | ||
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Junior Member
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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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"Thanks for this!" says: | waves (01-13-2013) |
02-24-2013, 02:37 PM | #8 | ||
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New Member
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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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03-20-2013, 09:58 AM | #9 | ||
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Junior Member
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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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04-21-2013, 01:37 PM | #10 | ||
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Junior Member
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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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