A Journey Through TMJ

Early Days

Recently I was standing upon a pier in Petoskey, Michigan, taking in the beautiful view of Little Traverse Bay, and thinking to myself that my new purpose in life was going to involve informing others about the condition known as Temporal Mandibular Joint (TMJ) disease (and the related condition called Dental Distress Syndrome). For years, I had been an unknowing victim of this debilitating and often confusing condition, which often is misdiagnosed by the general medical community.

December 2, 1998: a day that changed my life dramatically and forever. I awoke feeling as always, preparing breakfast and getting my three small children fed and clothed. However, by midmorning I was suddenly experiencing an acute bout of dizziness/inbalance, plus a periodic electrical shock sensation and feeling very much as if I were going to pass out. For a couple of hours I tried to shake these feelings off, but after calling and conferring with my husband who works a long commute away, I decided to call 911 (no neighbors were around and I could not drive with the dizziness). Within a short time the EMTs arrived and began taking vitals, which were mostly close to normal. However, to be safe they did transport me (and the kids) to the local hospital, where more tests were administered. I was released later in the day with a generally clean bill of health, although a prescription was given to me for the dizziness, suspected to be due to an inner ear virus. The prescription does little to alleviate the dizziness in the coming days and another new feeling like it was "raining" in my head occurs for most of the night.

Dark Times

Over the days, months, and years which followed that December, the original symptoms continued and new ones appeared periodically. During this horrible period, I was living my life as a shell of myself, always dizzy and dealing with a myriad of strange and often seemingly unrelated new symptoms: episodes of visual distortion, increasing despair and anxiety, head and neck pain, heart palpitations, digestive problems (including rectal bleeding) and constant ear pressure. The anxiety attacks were often "out of the blue", unlike anything I had experienced previously. I was becoming more and more disenchanted and cynical, angry that no one seemed to have an answer or could properly understand. I visited a series of general physicians, psychiatrists, psychologists, and specialists (ENTs, GYNs, cardiac, neurological, and gastroenterological) during this time, which preceded (and even followed) the initial TMJ treatment, who ordered many types of diagnostic tests in attempts to isolate the source of my problems. These tests included the following: an echocardiogram, 2 ENT workups, CAT scan of the sinus/face, MRI of the head, colonoscopy, endoscopy, neurological tests, and a 24-hour heart monitor. None of these tests detected serious abnormalities (other than possibly Celiac Disease ), and all provided little help in uncovering the source of my gamut of health problems. The general attitude from the medical community which examined me was that I was suffering from a generalized anxiety disorder condition, and that drugs and learning to deal with the condition were the only means of substantial improvement. Comments which I received, perhaps well intentioned but not very helpful, included the following: "learn to deal with your dizziness after this last test" and "Ativan is more likely to kill you than anxiety". It seemed plausible that the anxiety tag was a convenient diagnosis, as no other clear cause could be given based on the diagnostic and clinical tests given to date.

Many drug combinations were experimented with, some of which included Ativan, Haldol, and Buspar at the same time. In addition, I later began taking various beta blocker drugs to control the benign yet very noticeable PACS (premature atrial contractions). It seemed that many of the drugs had a negative influence on me, causing side effects which made isolation of symptoms extremely difficult. Although I could function somewhat better in my daily life with some of these drugs, they were unable to alleviate the growing neck pain, feeling of right ear fullness, and intermittent migraine headaches I was experiencing. The Haldol would leave me feeling tired, listless, and apathetic. The Ativan, on the other hand, had an addictive effect on me and proved to be very difficult to get off of. I tried to wean off it completely while visiting Ruidoso, NM, one afternoon (I had an ENT test the next day that could only yield accurate results without the drug), and had a terrible reaction, becoming almost catatonic. During about the same time I was experimenting with different beta blockers, I began suffering from numerous digestive and sleep-related problems which were not present previously. Finally, inside of buildings (in particular) I began experiencing visual distortions, as if my eyes were behaving like a zoom control on a camera lens.

My life had become nothing more than a 24- hour health watch, with my mind and life energy consumed by it. I had to quit a number of jobs, one of which I really enjoyed as a store cashier. I was at wits end, angry, growing desperate, and praying to God constantly for an answer. Just in the nick of time, before my body and mind had worn completely down, hope arrived.

Hope out of the Darkness

Thank God that my husband and I came across some information about the TMJ disorder while sleuthing on the internet one evening. The symptoms described really sounded familiar, and I began to wonder seriously about a connection- there certainly was not much else to hang my hat on.

I quickly set up an appointment with my dentist, who upon hearing of my now chronic symptoms (I had never mentioned them to him previously) and looking closely at my mouth and jaw, became suspect of a possible TMJ disorder. He arranged to have me seen that day by a local orthodontist, one of two locally with TMJ expertise, who he believed could make a better determination. Excited and buoyed by this new discovery, I had great hope upon entering the orthodontist's office. Unfortunately, my high spirits were quickly dampened after a hasty exam, and a 2nd opinion that I probably did not have TMJ. He blamed my years of suffering on possible ear infections, but attempted to pacify me by doing a fitting for an expensive oral splint. Later on in this same day, completely disillusioned by the visit with the orthodontist, I returned to my dentist in tears. He immediately sat me down (even with three patients waiting), had the orthodontist called to place a hold on the splint, and explained to me that he still felt strongly about his original suspicion and would immediately set me up with a bite disorder specialist in Albuquerque (whose expertise is also with TMJ). My dentist (whose own wife is a TMJ sufferer) went on to say that he suspects I will experience at least a 50% reduction in symptoms by visiting the specialist. I leave the office feeling a little better, and once home am able to set up an appointment with the bite specialist in just 2 days! There is still hope.

A Discovery and A New Light

After making the 222 mile drive from Las Cruces to Albuquerque with my family, I arrived at the office of the TMJ and bite-disorder specialist, for what turns out to be the first of many visits. He proved to be very open minded and a good listener, and I immediately felt more comfortable in what was initially a very stressful encounter. I spent a great deal of time discussing my history, and quite frankly, "spilling my guts". I was almost desperate for him to confirm my suspicions of TMJ, since I was nearing complete physical and emotional exhaustion. After hearing my story and visually examining my mouth, he agreed that TMJ could be a major culprit of my maladies. After having me bite into a computerized bite plate several times, it was evident from the distribution of the stresses that my bite was severely canted, the majority of the force being carried on oneside. I had only one tooth that was touching down properly! This was consistent with the almost constant sensation of ear fullness and neck pain I was experiencing on the right side.

He then concentrated on the area around my left Temporal Mandibular Joint, palpitating it to see if it would produce pain or indicate fluid and swelling. Although some pain was experienced and a little fluid was present, his feeling was that the joint was not hopelessly atrophied and damaged, and that corrective measures could even my bite and restrengthen my joint. This was fortunate, because a complete destruction of the joint can possibly lead to more chronic pain syndromes, such as Fibromyalgia, and even hearing loss. The TMJ specialist also mentioned that my history and symptoms suggested the possibility of a controversial cousin to TMJ, called Dental Distress Syndrome (DDS), which is thought by some in the dental/medical community to be a Pandora's Box of symptoms and maladies due to force imbalances in the mouth which eventually force asymmetric stresses on other body parts and systems. Quite possibly, my disorder had its roots in orthodontal work (braces) performed during my teen years, before my mouth and jaw had finished developing anatomically.

After completing this initial visit, I agreed to undergo a longer term treatment aimed at gradually regrooving (equilibriating) my teeth, so that a balance of forces could with time be reestablished in my bite. I was also fitted with a mouth deprogrammer (splint) which was specially molded to my teeth/bite, in order to help my mouth muscles stay in their new pattern. Otherwise, a tendency would exist for the muscles to settle back into their old pattern. It was a significant out-of-pocket expense, not covered by our insurance, yet my husband and I both agreed it was worth a chance. All other avenues had mostly failed to date. I drove home with my family that evening, experiencing a newfound hope I had seriously doubted would ever appear again. Although my TMJ specialist said this would take a long time to correct, and would be subject to many periods of ups and downs, I felt that there was at least a light for me to follow.

Rollercoaster

Over the next several months, I visited my TMJ specialist in Albuquerque about every three weeks for equilibriations, mouth deprogrammer adjustments, and progress reviews. He stressed I would feel better at 6-8 months (which was so important for me to hear after 3 years of suffering), although there would exist a tendency to experience some "down" cycles for a long while.

At home, I was making sure to have the muscles in my neck, shoulder, and back massaged, palpitated, and manipulated several times a day ( from my husband, a chiropractor, and a licensed massage therapist). This became an additional expense for us to incur, since our insurance would only partially reimburse the chiropractic visits, and not at all in the case of the massage therapist. Well worth the investment, however, since within weeks the feelings of fullness in the right ear and pain behind the right side of the neck had all but disappeared for the first time in over a year. The massage therapist did comment that my back resembled that of a car accident victim, even several months after my initial visit! Thankfully, the constant dizziness and bouts of migraines were greatly subsiding. The pain and discomfort was definitely waning, a clear indication that the TMJ/DDS was the major culprit. The year was now 2002!

Unfortunately, my TMJ specialist's warning of a "rollercoaster" recovery was seemingly prophetic, although he was unable to prepare me for the exact form of down cycles that I would experience. As the physical symptoms of pain went away, other curious problems suddenly appeared at 1 to 7 months into the treatment: insomnia, inability to relax, continuous feelings of being "energized", renewed palpitations and digestive problems, constant awareness of my own breathing, and visual changes. According to my TMJ specialist, and to other DDS literature I had researched online, at least some of these new symptoms could be temporary and related to the rearrangement of the entire body posture (and associated distribution of body forces) via the new balancing of forces in my dentistry.

Although drugs were still being used for the palpitations, an experimentation with daily Magnesium powder almost immediately and completely got rid of them. Coincidently, the insomnia and "Energizer Bunny" feelings also relaxed and eventually went away after the introduction of the Magnesium powder. Over time, the digestive problems also disappeared. The eventual elimination of the Beta Blockers (with the consent of my Cardiologist) also seemed to help. The visual and breathing changes, however, have proven to be the most perplexing and troublesome post-treatment changes. These symptoms appeared later, after about the fifth month of recovery. In fact, during the fourth month after starting equilibriation work, I felt on top of the world. I had lost the physical pain, had no anxiety, and the initial set of post-treatment problems had mostly disappeared. I seemed to be completely "cured".

At about this time, on the way driving to visit my family in Michigan (June 2002), I suddenly developed a sensation that I was breathing and no air was getting in (although, of course, it was). I tried very hard to ignore this troublesome sensation, but it wouldn't go away and it began to slowly raise my anxiety again. It didn't make sense to me, but I couldn't make it disappear. About two months thereafter, I suddenly started "freezing" whenever I would get myself into a setting where I was isolated and out in a wide open expanse (not hard to do in New Mexico). My whole visual system seemed to be really hypersensitive, and in combination with the breathing sensation, had become a trigger for renewed and even worsened anxiety. I started to dread what were once easy tasks for the past ten years, such as driving over the 6000' San Augustin Pass to visit my husband at White Sands Missile Range.

A visit to the optometrist revealed a substantial degree of a light phobia (photophobia). These might at least partially explain the problems I was having with concentration and with extreme sensitivity to certain environmental surroundings (including people speaking right into my face). During this time, I was also continuing treatments with both my psychiatrist and psychologist, and was started on 10 mg of a drug called Lexapro. In their opinion, despite the TMJ, I still had other anxiety-related conditions that needed to be treated. My TMJ specialist offered the possibility that the TMJ treatment had altered the way I was breathing via my sinuses, and perhaps even the overall facial blood flow, thus lending a potential physical cause for the breathing and visual changes. He also mentioned that TMJ disorders tend to affect facial and neck muscles that are common triggers of anxiety attacks in many individuals. Without a doubt, anxiety had become noticeably worse for me since all of this started back in 1998.

Where I am today

I now wear glasses, and at about 2 years post-treatment, am still dealing some with the visual sensitivity problems. However, I am also doing most of the routine tasks again (although driving to White Sands Missile Range is still a a challenge), and have also done some major endeavors like driving to both Michigan and Florida with the family. I feel better and better each month, although doing too much in short succession will still wear me out. The pain and anxiety are now so much improved!! I am down to 4 mg of Lexapro a day, which does help with the "distance-related" visual problems and with my overall anxiety and patience. The higher dosage at 10 mg did not leave me feeling as well. About every 2-5 months, some of the severe migraines/neck pain and anxiety still return, at which point I revisit my TMJ specialist for readjustments (14 visits in last 32 months). Almost immediately thereafter, all of these symptoms go away. This cycle may continue for another year or so.

I have a lot more energy, and a renewed sense of purpose and drive. It is truly the highest point I have been at in a long time. The battle is certainly not over with TMJ/DDS, and may never be. However, I now feel that I have the upper hand and the knowledge to get me through whatever this condition may have in store for me down the road. If I am lucky (and my gut since the onset has felt that I would be), TMJ/DDS will eventually ride off into the New Mexico sunset.

Final thoughts

Mine is just one (but quite unusual a form) of thousands of TMJ/DDS cases that exist each year. All are different, and present many varying symptoms. Most seem to be the typical TMJ presentation: joint deterioration, loose teeth, tooth sensitivity, tooth grinding, tooth wear down/cracking, widening space between front teeth, early root canals, facial/neck pain, jaw clicking, migraines, bite abnormality, tinnitus, photophobia, and dizziness. My own case was more atypical, and more consistent with DDS. In fact, my TMJ specialist has used my case for presentation at professional dentistry workshops in New Mexico during 2003, and will do so in Boston, Massachusetts during March of 2005 . In any regard, many sufferers expend a frustratingly long time and a lot of money attempting to diagnose their condition through conventional channels. Although not unheard of in the general medical community, TMJ/DDS seems rarely considered as a potential cause unless brought to attention by someone in the dentistry community. In my case, seeking out the cause of dizziness and neck pain led to years of diagnostic testing, drug experimentation, etc. It is hoped that this account of my own personal story will allow general practitioners, specialists, and potential sufferers alike the opportunity to learn of TMJ/DDS and of its many (often seemingly unassociated) symptoms. As a side note to this, my TMJ specialist in Albuquerque has used my example as a case study at several professional presentations around NM. To date, he has presented my TMJ case example to nearly 50 dentists within the state, using it to help demonstrate how TMJ and bite disorders can progress from 10 years through 30 years. For those currently suffering chronically from similar symptoms as those discussed, or simply curious about more information, several sources of TMJ information are given below.

Backstage with musician
John Mayer: 2004

The TMJ Association, LTD; PO Box 26770, Milwaukee, WI, 53226: http://www.tmj.org

International Center for Nutritional Research; 1-800-272-2323: http://www.icnr.com/DentalDistressSyndrome/DentalDistressSyndrome.html

TMJ Head and Neck Pain Center: http://www.tmjheadneckpain.com/tmjandsymptons.html