I have been having daily facial pain for the past 3-4 months. It started about 5 months ago, and gradually increased to daily pain. I have been to 3 doctors and 1 dentist now, and my curren doc seems to think it can't be Trigeminal Neuralgia, because I don't have a "trigger" point and because my pain is constant. My question is this: What about Atypical TN? Is that something that the doc should know about? Are my symptoms consistant with that? Should I do physical therepy on my jaw (because this doc thinks I am having muscle spasms)?
Here are my symptoms:
-facial pain only on one side of my face
-pain starts soon after I get up in the morning - rarely have pain at night
-pain is in front of ear down my jaw, and always ending at a certain point on my jaw- at the edge of my chin
-pain is buring, dull ache, to at times like a sharp knife is picking away at the inside of my ear
-pain also feels like a toothache - a really bad one
What should I ask my doctor? Should I ask for a referral to another specialist? I am currently being seen by and ENT doc. Or, can my symptoms be that of muscle spasms? Thank you!
Sorry to be so long in my reply to you. I also have Atypical or Type 2 TN, which unfortunately is harder to diagnose and harder to treat. I have spent a year trying to find the perfect cocktail of drugs to make life manageable as well as trying to avoid things that make it worse when possible. You say you dont have triggers, but maybe you do and don't realize it. When you are having a bad day, maybe look back and see what kinds of things went on that day and keep track. Busy day? Loud? Cold? Did you clean? Work out? Stress? Talk alot? Crunchy chewy food? Could be little things that add up or one big thing. Sometime there is just no darn reason and our face just hurts.
Here is some information I have, I wish I had live links but medhelp doesn't do that here.
This link explains ATN vs TN as well as diagrams to go with it.
Also go to www.fpa.org for general info, current research and resources by state. There is an excellent video from U of Michigan Dr.Ken Casey. You will have to register to see it, and it is long but worth it. There is so little out there on options for ATN. He explains drug and surgery options.
Stef's ATN Article 01/31/11
Posted by Gloria E. on January 31, 2011 at 4:29pm in Atypical Trigeminal Neuralgia
Atypical Trigaminal Neuralgia (ATN), or Type 2 Trigeminal Neuralgia , is a rare form of Trigeminal neuralgia, a disorder of the fifth cranial nerve. This may also be the most misdiagnosed form of neuralgia. The symptoms can be mistaken for migraines, dental problems such as TMJ, musculoskeletal issues, and hypochondriasis. ATN can have a wide range of symptoms and the pain can fluctuate in intensity from mild aching to a crushing or burning sensation, and also to the extreme pain experienced with the more common trigeminal neuralgia.
ATN pain can be described as heavy, aching, and burning. Suffers have a constant migraine-like headache and experience pain in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
Pain tends to worsen with talking, smiling, chewing, and, more rarely, certain sensations such as a cool breeze. The pain from ATN is usually less than that of typical trigeminal neuralgia, but is nearly continuous and periods of remission are rare. Unlike typical neuralgia, this form is more likely to be bilateral.
An effective way to demonstrate to others who are having a difficult time understanding or believing the pain you are in is to clip a large, black binder clip to your cheek on the good side. This is reported as being a very effective visual form of communicating to others the intensity and reality of ones pain. In one case this actually helped one person win their SS disability claim in getting the Administrative Law Judge understand what the applicant was experiencing.
ATN is an inflammation, demylination, and sensitivity of the trigeminal nerve. This may be caused by dental trauma, infection, demylinating diseases, or compression of the trigeminal nerve. An interesting aspect is that this form affects both men and women equally and can occur at any age, unlike typical trigeminal neuralgia, which is most commonly found in older women.
Treatment options include medicines, surgery, and complementary approaches. Opioid therapy such as Oxycontin, Methadone, [Duragesic]] and Morphine may be helpful when lesser medications do not provide enough relief.
High doses of anticonvulsant medicines—used to block nerve firing— and tricyclic antidepressants are generally effective in treating ATN. If medication fails to relieve pain or produces intolerable side effects, surgical treatment may be recommended.
Some degree of facial numbness is expected after most of these procedures, and TN might return despite the procedure’s initial success. Depending on the procedure, other surgical risks include hearing loss, balance problems, infection, and stroke. These surgeries include rhizotomies (which select nerve fibers are destroyed to block pain) and Microvascular decompression (the surgeon moves away the vessels that are compressing the nerve and places a soft cushion between the nerve and the vessels). Motor Cortex Stimulation can also provide some relief.
Some patients choose to manage TN using complementary techniques, usually in combination with drug treatment. These therapies offer varying degrees of success. Options include biofeedback, botox injections, vitamin therapy, nutritional therapy, hot-cold compact therapy, and electrical stimulation of the nerves.
It is often a combination of several differing therapies with various degrees of benefit which, when stacked together reach an acceptable degree of relief from the pain. One example includes: Duragesic patch, Delsum cough syrup (which helps opioid medications work better and reduce withdrawal symptoms as well), meditation, weekly acupuncture, daily relaxation routines, counseling, chiropractic care, physical therapy, counseling, a period of antidepressants to control depression, cuddling time with a cuddle buddy friend or partner, plenty of sleep, light physical activity, staying busy part of each day with an enjoyable hobby or activity that is rewarding, helping others and any other joy producing activity as increased joy works in direct opposition to the despair often part of chronic pain. Many patients report it is after they have "made friends" with the pain, often in the setting of pain clinic treatment, counseling and so forth, that the relief they seek is found.
Perhaps the most important part of treatment is to understand you must be a strong advocate for yourself. After becoming fully educated in the disease you must be prepared to work tirelessly until you find a set of treatments, both Western and Eastern that work for you. This is often reported to be a long frustrating experience. Those who report finding satisfactory relief fought hard until they found the relief they sought. Pain clinics are reported to be extremely helpful. Finding a doctor you can communicate well with and has knowledge about TN Type II is important.
Neuralgia usually goes undiagnosed or misdiagnosed for extended periods, leading to a great deal of pain and frustration on the part of the patient. This disease has earned the nickname "the suicide disease," due to the unfortunate and drastic steps some have taken when they have been unable to find relief. Patients exhibiting symptoms need to be persistent, and willing to try different doctors to find the help they need. Sleep deprivation and malnutrition have also been reported as byproducts of the pain. It is possible that there are other triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, stress, and poor diet are examples of additional stimuli that can contribute to the condition. The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition.
Depression is often involved as a result of the pain and the negative effect it has on one's life. Depression often makes the perception of pain even worse. Dealing with the depression should be considered equally important as finding relief from the pain.
What you describe is more compatible with stylohyoid syndrome or eagle syndrome. I can't examine you to confirm it, but you may ask your doctor to ask a doctor who will ask an other doc what it is and what to do.
Can you tell me more about stylohyoid syndrome or eagle syndrome? I have never come across this in any of the previous reading I have done nor had a doctor mention it before, yet my symptoms are almost identical to the above post. I did just now look it up and found it very interesting. I would like to hear more about it. What kind of doctor would one see to be examined for this possible diagnosis?
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