Palatal myoclonus is a rare movement disorder with rapid spasms of the soft palate muscles, which results in clicking or popping in the ear. The movements of the palate vary in rate between 40 and 200 beats per minute. Uniquely, the clicking noise does not subside when the patient sleeps. The frequency of the tremor is highly variable among different patients and may vary within a single individual, illustrating the atypical features of the tremor. When associated with eye movements, it is known as oculo-palatal myoclonus.
Here is a report of one patient's ongoing battle:
"During 2018 I developed severe and chronic muscle spasms throughout my orofacial region, which later progressed to my neck and upper airway.
These commenced during and following dental treatment by a practitioner in Northern Ireland.
I sought help from the following professionals ( I believe in chronological order )
- GP
- Dentist
- Specialist Prosthodontist
- Specialist Orthodontist
- Consultant Oral & Maxillofacial Surgeon
- Consultant Orthodontist and Professor local dental hospital
- Senior Oral Medicine consultant
- Consultant and Clinical Director Neurology
- ENT consultant Clinical Director
Prior to visiting Dr Amir in Dec 2020, I had the following medical conditions, listed in order of significance to myself:
This is a condensed list:
- Palatal myoclonus;
- Spasms and contractions of the muscles of the soft palate and upper airway;
- Orofacial Dystonia;
- Spasms and muscle contractions of numerous facial muscles;
- Spasms and contractions of the neck and suboccipital muscles;
- Spasms of the eye muscles;
- Myofascial pain;
- Head, neck, shoulders, lower back pain;
- Breathing difficulty;
- Neck instability and pain;
- Jaw clicking, popping, muscle spasm;
- Severe facial tension, pain talking, swallowing;
Many of the medical conditions listed commenced following dental work I had done during 2018. This is a succinct description of the medical professionals I have seen prior to seeing Dr Amir. In summary, I have been diagnosed with palatal myoclonus and Dystonia
- GP referral to a maxillofacial surgeon;
- Medication;
- Dentist;
- Splint, did not help;
- Specialist Prosthodontist - Splint in the retruded contact position. Did not help and made some eye and facial spasms worse. He, however, acknowledged that there was a discrepancy between occlusion and muscles of mastication;
- Specialist Orthodontist - He acknowledged occlusion had been left in a very poor state but stepped aside once the dental hospital got involved;
- Maxillofacial surgeon who referred me to a dental hospital where I was prescribed medication;
- Consultant orthodontist / Professor Dental hospital who referred me to oral medicine where I was again prescribed medication;
Neurology referral - The neurologist acknowledged on several occasions he had seen similar symptoms with older patients on receiving ill-fitting dentures but referred me on to movement disorder in a local hospital. ( I have not followed through on this )
- ENT - To liaise with neurology. No cause found for severe breathing difficulty;
- Neuromuscular dentist - custom splint following upper body tens machine stimulation. I found some relief with both Palatal myoclonus and Dystonia symptoms. However, many other symptoms like neck, breathing, pain etc still existed.
Here are some links to published literature that shows a link between Palatal myoclonus and dental treatment:
Essential palatal myoclonus following dental surgery
A case report.
Palatal Myoclonus Associated with Orofacial Buccal Dystonia
I analysed many peer-reviewed publications and more importantly, I spoke to many people with Dystonia, whose symptoms were being relieved and cured with dental work and custom orthotics. Specifically to reposition the jaw. Unfortunately, I could find no real long term cure for the palatal myoclonus, from speaking personally to many folks inflicted with this condition.
I found Dr Amir’s site online and impressed with many of the patient reviews decided to fly over for a consultation. During the consultation, it became apparent Dr Amir was extremely knowledgeable in treating TMD and had many years of experience.
He outlined many aspects of my oral health and indicated that he believed both my jaws were mispositioned. He positioned my lower jaw and indicated that the occlusion should in fact be in a different position. In fact, he had exactly positioned me into more or less the same position which the neuromuscular dentist had. This was a significantly different jaw relationship to which my occlusion provided but yet gave some symptomatic relief. In the consultation I also noticed my breathing improved in this jaw relationship.
Dr Amir, did not commit to providing treatment at this stage, but rather, put together a comprehensive report on what dental treatment would be needed. He indicated he may be able to get my TMD symptoms stable, but indicated that he could not commit to resolving any of the other neuromuscular issues.
A week later I returned to Dr Amir with the desire to commence treatment for stabilising my jaw and TMD. A functional appliance was fitted and I returned home.
One month into treatment my palatal myoclonus is significantly reduced. My upper airway spasms are reduced. My breathing has noticeably improved.
Two months into treatment my palatal myoclonus is still significantly reduced. Note - I have spoken to many people with this condition and no one has found a cure. Many are in a cycle of botox, which in many cases ( personal experiences shared ) resulted in severe swallowing difficulty for weeks on end.
After two months I have found the following improvements:
- Neck instability is significantly reduced. Cervical Pain and cracking are almost forgotten.
- Breathing is improving but still not normal.
- Palatal Myoclonus reduced
- Dystonia of the fascial muscles improving. I have had several days where this has vanished. It is now intermittent but still present.
- Head and neck tension and pain are reducing.
In summary, I feel very lucky to know finally that I will be seeing some improvement in the many debilitating chronic symptoms I have. My family and I are very grateful to have found Dr Amir."
Note: Further submissions will be added as the patients treatment progresses.
Myoclonus is an alarmingly distressing symptom. An ocular connection is present but I have also come across an auricular version where the ear visibly twitched rhythmically and continuously. This had been successfully treated.
When a patient presents with a symptom that I have never even come across before, I do not initially give the patient any hope nor do I discuss the symptom at length.
On reading the questionnaire submissions and his initial email narrative I noted that the symptom had been caused during a dental intervention and subsequently he had received some respite with another dental intervention. I was therefore optimistic that I could possibly help this patient.
The patient is in a distressed state and my experiences show that there is only one way to fix any such problem which is a complex intervention as the patient had multiple anomalies. The patient was given a written report with all the complexities involved which he accepted.
The dictate of the dental governing body, probably formulated upon the advice of multiple experts such as the ones this patient unsuccessfully consulted with, is that I initially offer the patient simpler solutions to their jaw problem namely:
a) Advise the patients to eat soft foods;
b) Undertake jaw exercises;
c) Undertake physiotherapy;
d) Undertake Cognitive Behavioural Therapy;
e) Prescribe a bite raising splint.
If I offered such Mickey Mouse treatments to patients such as this patient, I would not make a 1% difference in their condition. I would actually multiply their problems for a number of reasons:
a) All the symptoms deteriorate and additional symptoms start when proper intervention is delayed.
b) Directing patients to eat soft food or undertake jaw exercises or physiotherapy is an opt-out for the practitioner and gives absolutely no comfort or relief to the patients' symptoms.
c) Directing patients towards CBT is almost telling them that their problem is a mental issue insulting their intelligence.
d) Splints always make patients worse by depressing their teeth deeper in the bone causing further deterioration of the jaw joint. A month down the road and the patient soon notices that they have more pain than they started with.
It is possible to get away with these kinds of first-line treatments and make a fat fee literally swindling the patients. However, patients arriving here have usually considered and tried most of these and many different modalities of care. Some have spent a 100K on their treatment and gotten only worse. Others have been on such merry go rounds for thirty years and still as desperate if not more so, as the day they first set out to get some relief from their symptoms.
Our office and other like-minded practitioners around the world, are usually the patients' last port of call. We cannot continue to give them treatments which have never made one iota of difference to patient symptomatology.
