Palatal Myoclonus Sufferer

[Tolga]

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 palatal myoclonus, 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 palatal myoclonus 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 palatal myoclonus. They do not know anything.

I wonder if anyone suffers from palatal myoclonus here? Anyone who got relief from palatal myoclonus? It would be great to hear some hopeful news.

 

[Kee]

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 ENT, 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.

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.

Have a good day. Thinking of you.

 

[Frédéric]

Management of palatal myoclonic tinnitus based on clinical characteristics: a large case series study

Abstract
Background: Palatal myoclonic tinnitus (PMT) is a rare otological condition caused by rhythmic contractions of soft palate muscles. Due to its rarity, only a few case series studies have been reported in the literature at the present time.

Aims: This large case series study reviews treatment outcomes of PMT patients over the past 15 years based on clinical characteristics.

Materials and methods: Between the year 2003 and 2018, 54 patients with a diagnosis of PMT were assessed. Clinical characteristics, audiological findings, psychological status, and other relevant medical history were thoroughly reviewed. Response to various treatment modalities were retrospectively analyzed.

Results: The mean age of enrolled patients was 29.0 ± 16.4 years, with female gender predominance. All of the patients complained of 'clicky' sounding tinnitus. Twenty-nine patients had comorbid tinnitus of other type. Reassurance and behavior therapy was sufficient for young patients. Medication was effective in 44.4% of the patients. Botulinum toxin injection in the palate led to complete resolution of symptoms in a majority of intractable PMT patients.

Conclusions and significance: Management of PMT should be customized according to the individual clinical characteristics of the patients. This study may provide insightful information to establish optimal treatment modalities for PMT.

Source: https://www.tandfonline.com/doi/abs/10.1080/00016489.2020.1749724

 

[athan86]

Around 2016 I developed palatal myoclonus symptom (soft palate tremors).

Could there be a relation between palatal myoclonus and tinnitus?