Michelle has suffered with SUNCT, Migraine and many other symptoms of TMD. This is her story:
Fairly long and detailed!
Mid-August of 2006, I scheduled my routine dental check-up which resulted with having a cavity filled the next week. After having the cavity repaired, my tooth was hurting more and more. Early Sunday morning I was awakened by the worst pain I had ever experienced. It felt like my head was going to explode, my right eye was droopy, my vision was blurred, and I had an odd sensation on the right side of my head to my arm. I knew I should go to the hospital, but I resisted. My vision continued to vary in my right eye. The following day, my head was better, but still in pain. My tooth pain was also increasing. My doctor was out of town, so I went to a local doctor whom ordered an MRI. Following the MRI, I returned to my dentist because my tooth pain continued to rise. My dentist explained that the actual tooth hurting was not the tooth that had been filled, and if the tooth didnâ€™t quit hurting, I may need to have a root canal. When the MRI results came in, I followed up with my regular physician. He explained that no abnormalities were noted. By this point, the tooth pain had expanded to facial painâ€¦shooting, stabbing, etc. Based on my presentation of symptoms, my family doctor felt that I probably had trigeminal neuralgia and migraines; I was started on Tegretol and prednisone. I experienced minimal improvement while on the medication, so my physician referred me to a neurologist.
October, 2006, my neurologist stated that he felt I had trigeminal nerve pain, but not classic trigeminal neuralgia. I was placed on Neurontin to assist with the facial/eye pain, and later Topamax due to the increase in frequency and intensity of migraines. As time passed, my headaches, eye pain, and facial pain increased. Cold, wind, and touch set my face off in pain. I had increasing pain in and around my right eye. I experienced facial spasms, in which my jaw would draw to the side for hours. Jaw joint pain and facial spasms increased. Due to the presentation of symptoms, my neurologist suspected I had a disorder of the jaw joint and referred me to an oral surgeon in Feb/March of 2007. Due to my training as a speech/language pathologist, I also believed I had a disorder of the jaw joint. I knew my presentation of symptoms was not typical for trigeminal neuralgia or migraines. The oral surgeon disagreed; he stated I was at risk for jaw joint problems due to my closed bite, but at the time I did not have any problems and referred me to an orthodontist to be fitted for a splint to wear at night to help reduce pain. The orthodontist determined that he didnâ€™t know what was contributing to the facial/jaw joint pain, but that a splint would not provide me with the pain relief I was searching for. Upon discussing these findings with my neurologist, he determined that I needed to be referred to a different neurologist; if it wasnâ€™t a jaw joint disorder, he was unsure what it was. He expressed that I was experiencing blepharospasms and possibly a type of facial dystonia, due to the eye and facial spasms, but that would need to be further evaluated. I questioned having my facial muscle and nerves evaluated. I was told that he was unsure of where that could be done, but possibly at the Mayo Clinic.
My neurologist attempted to get me into the Mayo Clinic, but was unsuccessful. So, I was referred to a neurologist in Kansas City. My second neurologist immediately diagnosed me with SUNCT Syndrome (Short-Lasting Neuralgia Form Headaches with Conjunctival Injection and Tearing) and migraines. He was confident that the shooting, stabbing, and electrical pains in my face, eye, head, and temple were due to the SUNCT. He also felt that the eye spasms and drooping were the result of SUNCT. As time passed I was placed on a multitude of medicationsâ€¦neorontin, lyrica, anti-convulsion medications, blood pressure medications, anti-depression medications, etc. with little success. As the months passed, the facial spasms, pain, head, and then neck pain increased. I questioned my neurologist if something else could be occurring. I again asked about the possibility of jaw joint issues. I also questioned having nerve and muscle functioning testing completed on my face. He was adamant that that did not need to be done and that I was experiencing atypical facial pain, migraines, that was it, and to continue his protocol of treatment. He expressed that I needed to understand that some people are disabled by migraines and to continue his trial of medications. I was not going to accept that I was going to be disabled at the age 30. And, by this point (June, 2007), I did feel nearly disabled. I was homebound, with not being able to walk outside or up/down my stairs in my own home. For most of the summer I was too ill to care for my own children, unable to get out of bed for days at a time due to the pain, and equilibrium problems. I would stumble and was unable to walk upright when the pain was flared. I didnâ€™t know how I would be able to start work again after summer break. Searching on the internet, I found a TMJ specialist out of state. I read information on the website, read the doctorâ€™s research, and felt it would be beneficial to be evaluated by him.
Upon evaluation by the TMJ specialist (September, 2007), my jaw was dislocated and locked. The specialist was able to successfully unlock my jaw. I was fitted with a splint to wear around the clock for 2 months and then at night to assist with keeping my jaw from dislocating. It continued to dislocate frequently, but not to the extent it was initially. Later, the specialist diagnosed me with splenius capitis muscle syndrome and temporal tendonitis. I had radiofrequency procedures completed to assist with pain reduction and healing of the nerves. The splenius capitis procedure immediately eliminated the constant pain I was feeling in the parietal area. This was such a relief; I felt like I would somehow now be able to manage. My facial and jaw joint pain, however, continued to increase. An MRI of the jaw joints was later ordered due to the continued increase in pain; however, the results indicated no jaw joint abnormalities.
Throughout this experience I trialed chiropractic treatment, acupuncture, and myofascial release therapies. I do believe that I benefited from the acupuncture. The relief, although, was not long lasting.
Later, I followed up and shared the TMJ information with now my third neurologist (January, 2008). The neurologist agreed that I had SUNCT syndrome. I continued on Topamax and trialed other medications. Again, I experienced limited success with pain reduction/migraine frequency. As time passed, my eye/temple pain and eye spasms increased. My neurologist referred me to a neurologist whom specialized in dystonia. I believe this was one of my most frustrating experiences. He asked me a variety of questions, and everytime I talked about â€œpainâ€, he informed me that my regular neurologist would address that. I did not realize as a diagnostician, it was acceptable to pick and choose what symptoms you would listen to. Pain was the major factor in my presentation of symptoms. Well, I was informed my regular neurologist would take care of my pain and headaches and he would address the â€œotherâ€ issues. Given that he was ignoring pertinent information, he proceeded to diagnose me with possibly Touretteâ€™s Syndrome; stating that I didnâ€™t present with the psychological factors common for that identification, or that I presented with an uncommon form of dystonia. He said he would need to see me again to make up his mindâ€¦.. Desperate for pain relief, I took the clonadin prescribed. I did sleep better than I had for months, but quickly began experiencing bizarre side effects. My face started pulling to the side, and eyes started rolling back. This wouldnâ€™t last long, but it did startle me. I called and discussed this with the prescribing neurologistâ€™s nurse. I was told to increase the medication. By the end of that week, I was admitted to the hospital for six days due to seizures, which consequently stopped after all of the medications were ceased. I again questioned having the facial muscle and nerve functioning assessed. I was told they might do that type of testing at KU, but he didnâ€™t know. He insisted that I needed to accept the diagnosis of migraines and quit searching for a cause.
Once I was feeling better, I felt I needed a follow-up with my TMJ specialist out of state (September, 2008). I traveled to have an evaluation completed which resulted with being told that he was unable to offer any further assistance. He recommended that I follow up with a specialist regarding my neck pain and back pain, and an ENT. So, once home I scheduled an appointment with an orthopedist. I was told by that doctor that everything was structurally acceptable and I may want to see a physical therapist for the pain. I was also seen by an ENT, whom, was unsure of what was contributing to my facial, throat, and ear pain. Soon, my family doctor referred me to a pain clinic due to the severity of my pain, which by that time was impacting my whole body. The pain specialist trialed various injections in my neck, shoulder, and head. The injections in the occipital nerve did help with the pain on the back and side of my head, as well as, the eye pain.
Despite doctors insisting that nothing else could be done other that trialing various medications, I continued to search for assistance and relief. In October of 2008, I discovered Dr. Ramanâ€™s website. I read the information and saw that he performs the facial muscle and nerve testing in his office. I was astounded to find out that the testing, that I had requested was actually available nearby. On my way home from a visit at the pain clinic, I stopped in his office to see if I would be a candidate for treatment. An evaluation was scheduled for the next week. Results of the testing indicated significant problems with the jaw joints and that yes, the muscle and nerve functioning was impacted, too. Dr. Raman explained that the MRI is commonly used to assess the jaw joints, but that it is not sensitive to measuring that structure. The CAT scan performed in his office revealed significant damage. At a follow-up appointment I was fitted with a fixed orthotic over my mandibular teeth to hold my jaw in the correct position. I found immediate relief once the orthotic was placed. I experienced a dramatic decrease in migraines and my other neuralgia pain, face, and jaw joint pain began to decrease, also. In addition, I was referred for physical therapy to address my neck and back functioning.
Due to the progress and reduction in jaw joint, facial, throat, ear pain, and headaches during a three-month period, we determined to progress on to the next level of treatment which is orthodontics to permanently adjust my bite to its proper positioning. I have had braces for nearly one year. Although I am not 100% pain-free, I have experienced an 80-90% reduction in the pain I was once experiencing. I know that I can have a bad day or two and that it wonâ€™t turn into a bad couple of months or even longer. I have my life back. I no longer wake each day thinking not if it is going to be a good day, but how much pain will today bringâ€¦.will it be manageable, or debilitatingâ€¦.will I be able to care for my children, or will I have to send them awayâ€¦. I am able to enjoy living, my children, my husband, my family, my friends, my careerâ€¦. I am so thankful for having the ability to live again, to care for my children, and the ability to give my family the mother they deserve.