Palatal Myoclonus Sufferer

Discussion in 'Support' started by Tolga, Sep 14, 2015.

    1. Tolga

      Tolga Member

      Tinnitus Since:
      Hello. I am a palatal myoclonus sufferer for almost 6 years now but it has developed so gradually that I realized something was going wrong when I was 14. Doctors could diagnose my disease 4 years ago. I live in Turkey by the way. I researched everything about PM, went to lots of doctors but nothing worked to cure me. All the doctors say that they do not know the possible reason that cause my PM and there is no cure about it so I should forget it and try to focus on other things, according to them. I am sick of living desperately right now. I give up trying to search the treatment options and then I get hope again to be cured, I cry then I try to forget all those things. It is a vicious cycle for me. It is a shame for medicine that they could not even find a root cause of PM. They do not know anything. I wonder if anyone suffers from PM here? Anyone who got relief about PM? It would be great to hear some hopeful news.
    2. Kee

      Kee Member

      Hello Tolga you're not alone. I have been suffering with this for 2 years.

      The disorder itself is bad enough, but the lack of answers/information on it, make it even more unbearable. I suffer every day of my life. I cannot work because of this condition. It has effected all aspects of my life. Not only am I in physical agony 24 hours a day but it has also effected everything else in my life.

      I too, have desperately been trying to get help. I live in the United States, but it is the same thing here. I have been to 5 neurologists, 4 ENTS, TMJ doctors, chiropractors, etc etc and just nothing.

      Medications do absolutely nothing in my experience, except for numb me from what is actually going on. None actually address the problem.

      To explain to someone what it is like to have a 24 hour seizure in your mouth and throat muscles is beyond words. Do you experience many symptoms with yours? My symptoms are off the charts, which include INSANE pressure in the head, ears, clicking in the ears, tinnitus, sound sensitivity/autophony. It feels like a clamp in on my head at all times. There are many other symptoms I experience as well, and would be impossible to explain on here. I also have pretty bad anxiety and depression as a direct result of this condition.

      Have you tried botox? It gives me partial relief. It does stop the clicking, but it does nothing for any of the other symptoms I mentioned.

      Don't listen to doctors that tell you to "get on with your life" They just don't get it, and because they are not experiencing it as well, they never will get it. I have experienced the same thing. I swear, doctors need to be taught how to deal with people with rare disorders. Maybe they are in med school, but man, I have experienced some real ridiculous stuff with doctors. It's hard enough living with a physical condition that no one knows anything about..We are the type of people that need more support but I have experienced quite the opposite. Because doctors do not understand it many are quick to shoe me away or make comments like the one you mentioned.

      Anyways, Tolga are you on Facebook? I am not at the moment but will be back soon. If you are, there is a couple of groups on there for palatal myoclonus. Join the group that has Stella as the Group Leader. There are people from all over the world on there that also have PM. Also, feel free to add me as a friend on here.

      One last thing you'll notice if you join that group: Most on there have essential PM (no brainstem lesion found), and you'll notice that although we all have PM, we all have different versions of this horrible disorder. Every case seems to be a little different. So what works for you, might not work for someone else and vice versa.

      Good luck Tolga. Sending you some positive vibrations. I know first-hand how hard it is to live like this..

      As far as hopeful news: I keep hanging on to dystonia research as I believe that can possibly help us. Because that condition is more common there is more research being done on it.

      Also, some people in the facebook group HAVE gotten relief. Finding the CAUSE is very important though..

      Have a good day. Thinking of you.

    3. AUTHOR

      Tolga Member

      Tinnitus Since:
      Kee thanks for your reply first of all. It is really good to know that I am not alone with this. There are lots of things that I can talk about, seriously. You can guess the difficulties I experience. They are not very different from yours. However I am sick of complaining. My logic just don't get it. Many doctors try to reduce the effects of symptoms. It is ridicilous. Go and find a REAL CAUSE of this problem. Don't waste our time telling the things that we have already known. Really, sometimes I want to punch them lol. Dude, I don't want to be hopeless you know. Yes I have anxiety and depression as well, and yes I used the antidepressant drugs for last year. We know what we live with and just we understand each other. I say that we should not be angry at ourselves. This disease will be cured in future anyway. Until that day we should not give up trying to get relief, even if there is a possibility that we won't be cured. It is worth trying isn't it? You get what I say I know. We should keep in touch man. I am very glad to know you. Thanks for your attention.

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