Palatal Myoclonus - Heard but not seen
last updated May 2021--PM frequently asked questions including treatment options
THE DISORDER
Imagine having a muscle in your hand, arm or leg moving involuntarily 100–150 times per minute. Envision the pain that could come from a muscle contracting that rapidly and repeatedly with no break—ever. Now imagine that muscle is in your ears. Along with those rapid muscle contractions, which are actually your Eustachian tubes opening and closing, an audible noise (or clicking) can be heard by you. The rapid clicking that happens in both ears can be so loud and violent that it can be heard by others across a quiet room. This is what was happening to my child. It sounded like he had swallowed a clock that was ticking way too fast. It was as if an explosion was imminent inside his head. And some days, it felt like an explosion with pressure beyond what any individual could possibly experience unless someone put their head in a vice and squeezed. This is palatal myoclonus. This was our nightmare.
There are many different kinds of myoclonus. Jacob was diagnosed with essential palatal myoclonus which is defined as involuntary, regular, rhythmic contractions of the soft palate. The movements are believed to be the result of an abnormal electrical discharge in the nervous system. The contractions result in a rhythmic clicking from the opening and closing of the Eustachian tubes in both of his ears that can be heard by others near him. These clicking noises can be very rapid, occurring up to 150 times per minute in each ear and also occur during sleep. Loud noise can exasperate this condition. For some people, Jacob included, these contractions are also accompanied by myoclonus in muscles of the face. Unfortunately, research has shown that palatal myoclonus can last indefinitely and can affect other parts of the body. For about four months in 2008, Jacob also experienced contractions of his bladder. That problem was resolved with medication. By mid-2010, Jacob was experiencing muscle contractions in his arms and wrists as well. By late 2013, Jacob was experiencing myoclonus of the diaphragm. In 2015, we may have found the cause that linked all of these things together, Lyme disease with co-infection of Babesia.
TREATMENT FOR THIS DISORDER & SIDE EFFECTS OF THE MEDICATIONS
DRUGS, DRUGS, MORE DRUGS, MORE TESTS, ALTERNATIVE MEDICINE, MORE DRUGS...CURE?
Treatment for myoclonus can be attempted by using a combination of drugs. These drugs may reduce symptoms, but not completely alleviate them. The dosing and results vary by individual and the process is slow and based on trial and error. Most had devastating side effects. It turned out that there was no good combination for our son so we opted for other avenues. (For a list of medications tried by numerous PM patients, please see the tab for PM Frequently Asked Questions under the Palatal Myoclonus tab.)
THE IMPACT OF THE DISORDER
Prior to this condition and prior to the use of these drugs to treat Jacob’s disorder, I would have described him as very studious, intelligent, incredibly focused on a task set before him, eager to please, a great listener, cooperative, polite, helpful, kind, and considerate of others.
Subsequent to dealing with this disorder and dealing with the side effects of these medications, Jacob had trouble focusing and completing tasks in school. We saw his wonderful personality diminish. He was no longer happy all the time. There were days when he could not cope with his problems, and he stopped functioning in school and at home. His sensitivity to sound would preclude him from participating in basketball, shows, movies, and assemblies at school. He had to be removed from the building for fire drills as the sound of the alarm caused excruciating pain that could last for days. Eventually, he couldn't attend school at all. He could no longer perform simple math operations. He could no longer read or write. He was completely debilitated from normal activities. As time went on, he had trouble eating without pain, trouble sleeping, and trouble finding purpose for staying alive.
Continue reading on the next tab, Neuralgias.
Links and introduction to my books documenting this journey:
Link to the Myoclonus Fact Sheet for the National Institute of Health
Due to the complexity of these conditions and the detailed nature of all the research I have done, I have chosen to document all of these facts in a book called Connecting the Dots. It includes alternative medical therapies, surgeries, and lists all avenues we pursued to find relief and answers. It includes navigating the medical community, and finding support in the least likely places.
Throughout all our hardship, I had a great need to know that I was not alone. I documented the bible verses that helped motivate us and promised us we would not be forsaken. Our journey from brain surgery to PM to tick-borne illness is shared in the book, Faith, Love & Laughter.
See also the tab under Palatal Myoclonus for PM Frequently Asked Questions
Imagine having a muscle in your hand, arm or leg moving involuntarily 100–150 times per minute. Envision the pain that could come from a muscle contracting that rapidly and repeatedly with no break—ever. Now imagine that muscle is in your ears. Along with those rapid muscle contractions, which are actually your Eustachian tubes opening and closing, an audible noise (or clicking) can be heard by you. The rapid clicking that happens in both ears can be so loud and violent that it can be heard by others across a quiet room. This is what was happening to my child. It sounded like he had swallowed a clock that was ticking way too fast. It was as if an explosion was imminent inside his head. And some days, it felt like an explosion with pressure beyond what any individual could possibly experience unless someone put their head in a vice and squeezed. This is palatal myoclonus. This was our nightmare.
There are many different kinds of myoclonus. Jacob was diagnosed with essential palatal myoclonus which is defined as involuntary, regular, rhythmic contractions of the soft palate. The movements are believed to be the result of an abnormal electrical discharge in the nervous system. The contractions result in a rhythmic clicking from the opening and closing of the Eustachian tubes in both of his ears that can be heard by others near him. These clicking noises can be very rapid, occurring up to 150 times per minute in each ear and also occur during sleep. Loud noise can exasperate this condition. For some people, Jacob included, these contractions are also accompanied by myoclonus in muscles of the face. Unfortunately, research has shown that palatal myoclonus can last indefinitely and can affect other parts of the body. For about four months in 2008, Jacob also experienced contractions of his bladder. That problem was resolved with medication. By mid-2010, Jacob was experiencing muscle contractions in his arms and wrists as well. By late 2013, Jacob was experiencing myoclonus of the diaphragm. In 2015, we may have found the cause that linked all of these things together, Lyme disease with co-infection of Babesia.
TREATMENT FOR THIS DISORDER & SIDE EFFECTS OF THE MEDICATIONS
DRUGS, DRUGS, MORE DRUGS, MORE TESTS, ALTERNATIVE MEDICINE, MORE DRUGS...CURE?
Treatment for myoclonus can be attempted by using a combination of drugs. These drugs may reduce symptoms, but not completely alleviate them. The dosing and results vary by individual and the process is slow and based on trial and error. Most had devastating side effects. It turned out that there was no good combination for our son so we opted for other avenues. (For a list of medications tried by numerous PM patients, please see the tab for PM Frequently Asked Questions under the Palatal Myoclonus tab.)
THE IMPACT OF THE DISORDER
Prior to this condition and prior to the use of these drugs to treat Jacob’s disorder, I would have described him as very studious, intelligent, incredibly focused on a task set before him, eager to please, a great listener, cooperative, polite, helpful, kind, and considerate of others.
Subsequent to dealing with this disorder and dealing with the side effects of these medications, Jacob had trouble focusing and completing tasks in school. We saw his wonderful personality diminish. He was no longer happy all the time. There were days when he could not cope with his problems, and he stopped functioning in school and at home. His sensitivity to sound would preclude him from participating in basketball, shows, movies, and assemblies at school. He had to be removed from the building for fire drills as the sound of the alarm caused excruciating pain that could last for days. Eventually, he couldn't attend school at all. He could no longer perform simple math operations. He could no longer read or write. He was completely debilitated from normal activities. As time went on, he had trouble eating without pain, trouble sleeping, and trouble finding purpose for staying alive.
Continue reading on the next tab, Neuralgias.
Links and introduction to my books documenting this journey:
Link to the Myoclonus Fact Sheet for the National Institute of Health
Due to the complexity of these conditions and the detailed nature of all the research I have done, I have chosen to document all of these facts in a book called Connecting the Dots. It includes alternative medical therapies, surgeries, and lists all avenues we pursued to find relief and answers. It includes navigating the medical community, and finding support in the least likely places.
Throughout all our hardship, I had a great need to know that I was not alone. I documented the bible verses that helped motivate us and promised us we would not be forsaken. Our journey from brain surgery to PM to tick-borne illness is shared in the book, Faith, Love & Laughter.
See also the tab under Palatal Myoclonus for PM Frequently Asked Questions