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Originally Posted by americaninberlin88
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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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.