I have been suffering pain that begins with light touching in a region from my cheeks to just above my ears. The cheeks are the most sensitive areas. It leaves my face and quickly moves to my head and leads almost immediately to very severe headaches. The pain can be triggered by both sides of my face. The pain began with a small electrical explosion about a foot from my face. I have seen numerous doctors and they have said it is Trigeminal Neuralgia and have been sent to specialists who have said it is not TN. The main reason they have given is that it is bi-lateral. I do receive relief from oxcarbazepine (Trileptal) and lamotrigine (Lamictal),but they seem to be losing their impact. The pain and headache are so severe I can barely stand it. What could this be? Any thoughts on what to do?
Your symptoms certainly sound like TN other than the bilateral part of it. I do remember reading that bilateral can occur although rare. Don't quote me on that, I am by no means an expert, and everything you read on the internet is not always accurate. I searched the facial pain associatons latest research and could not find anything except a post surgical issue.
I assume you have had an MRI and thorough dental/tmj exam and ruled out any of those standard issues? Sometimes bone/joint deterioration can impact the TN nerves and cause pain which may explain it occurring on both sides.
A detailed MRI of the temporal mandible joint and an exam by a maxiofacial surgeon would be the next step in exploring this if your neurologist rules out typical TN. I have an old post regarding this I will try and find for you and send to you if I can.
Also, it's normal for the drugs to lose their impact. Ask them about alternatives or different combinations.
Good luck to you.
found it. it's long... but who knows. might be something of value in there.
TMJ or jaw joint dysfunction, is the major and usually the only cause of your suffering. Your doctors, including neurologist, have simply not received the dental training required to be able to diagnose TMJ problems and how they relate to your migraine or headache pain. Physicians just don't know enough about it. Furthermore, many dentists jump on the bandwagon thinking that they can cure these ailments, only to find that they lack the skill and experience to get the job done.
Once you find the right specialist, your recovery and elimination of pain is virtually assured!
Involvement of the Trigeminal nerve
The reason that the TMJ and your jaws cause migraines and other head pain problems is due to the fact that the trigeminal nerve is one of the most complex and powerful nerves in the human body. It is very closely associated to the TMJ and completely responsible for your jaw and tooth functions. It feeds sensation and function to your jaws, face, tongue, sinus, palate, eyes, teeth, and lips.
The trigeminal accounts for over 40% of the brain's processing. The trigeminal also has innervation and control over certain areas of the brain itself.
The trigeminal nerve is also "married" to the facial, hypoglossal, and vagus nerves. These nerves control sensation and function of almost all other muscles of your head, neck, and throat. The facial nerve is also intimately associated with the TMJ. Many branches of these nerves pass through or around the TMJ. "Upsetting" any of these 4 nerves usually ends up disturbing the other three.
Migraine: This could be undiagnosed TMJ compression and disk dislocation or the reasons could be complex. A long time ago this patient's jaw joint became dysfunctional. The natural, protective disk of the joint slowly resorbed over time and the jaw joint is now rubbing less than 1/16 of an inch away from the brain tissue. This jaw joint "bangs" on the underside of the brain over 5,000 times a day (every time she chews, swallows, yawns, laughs, eats, speaks, etc.) This patient usually has no signs of any TMJ pain or problems. The physician or dentist may do a quick TMJ exam and find absolutely nothing wrong. This patient may not have ever had any signs of TMJ popping, clicking, or pain. There may never have been any signs of jaw or jaw joint problems. However, upon reading a proper transcranial x-ray there is undeniable proof that the joint is damaged and responsible for mediating the migraine problem. It is like the story of the frog in the pot: put a frog in a lukewarm pot and bring it to boil slowly, the frog will boil to death. However, throw a frog into a boiling pot and the frog will jump out to save itself. Some patients may experience TMJ problems at one point or another, while other people are simply not aware of the problem happening in their own body. The body simply adapts to the problem due to the fact that the joint is used over 5,000 times a day. The joint becomes "numb" or "dumb", but the pain is relayed to other parts of the body.
In some patients, the joint itself may hurt or pop and click. This is normally seen during the early stages of some headache sufferers. After a while the noises and joint pain may go away, but the joint continues to undergo damage. It just becomes quiet and the pain gets transmitted to the other parts of the head. The patient who experiences once a month headaches, along with a poppin joint, eventually becomes the twice a week headache patient with no joint noises.
Vision: The trigeminal nerve is responding to a muscle and jaw joint compression by irritation of its maxillary/opthalmic division. The problem is not even close to the eye. It is usually found within a damaged jaw joint or an abnormal muscle/jaw function.
ENT: The jaw joint is less that 1/4 inch away from your ear. Over 5,000 times per day that joint "bangs" on your ear. Take away the protective disk, and there is not much left to keep your ears from hurting. The trigeminal and facial nerves have many branches that project into the ear. Even the slightest dysfunction can cause the ears to hurt.
The trigeminal nerve feeds the sinuses and palate. Improper function of this nerve, along with muscular dysfunction cause the sinuses to act problematically. The muscles of your jaws attach to your sinuses. Upset muscles cause sinus problems! Upset muscles cause nerve dysfunction, and vice versa.
Irritation to the trigeminal or facial nerve can cause symptoms in distant areas to the other nerves. It is not uncommon for patients with TMJ problems to have burning throats, difficulty swallowing, or other abnormalities of the throat.
Most medications for headaches try to cure symptoms instead of causes. The problem behind what physicians coin as "vascular headaches" is that they forget to find what causes the distension and the blood flow changes, to begin with. The simple explanation is found by reviewing the autonomic nervous system. The sympathetic nervous system is so overworked in headache patients that a common diagnosis we find is RSD (reflex sympathetic dystrophy). In other words the body is constantly on the accelerator, breaking down...because the parasympathetic system is not given a chance to work and bring balance to the body. This happens as a result of joint damage, stressful life, smoking, irritability, and other factors that contribute to a stressed body. The body is "on fire"! Treatment must be aimed at changing the lifestyle. If there is true joint damage, then treatment must also correct this, because the joint damage may be causing the stress.
In a patient with joint damage, the vascular changes are clearly evident and diagnosable.
Trauma: Car accidents, even at velocities as low as 9 mph, can result in whiplash which cause dislocation of the jaw joint. The dislocation may cause immediate signs and symptoms of TMJ pain, or it can take years for the problem to surface. Remember the boiling frog! Some people do not exhibit immediate signs of jaw joint dislocation, because it may take time for the protective disk to resorb and cause dysfunction of the jaw joint area. The disk slowly resorbs and the patient feels no pain. However, as the protective mechanism of the disk is lost, the jaw joint starts to rub on the skull bone/brain tissue and the body starts to exhibit signs of pain transmitted as migraines or headaches. Basically, the jaw joint remains symptomless because you use it so many times during the day (over 5,000 times) that your brain adapts to its underlying problem. Remember, the joint becomes "dumb." The nervous sytem, on the other hand, being mediated by the trigeminal and facial nerves, starts to make the body aware of the problem. That's when the headaches begin!
GERD: The vagus nerve and hypoglossal nerves are responsible for swallowing. The trigeminal is responsible for chewing. Take the nerves out of balance and your digestion system will eventually break down. Over 50% of your digestion starts and completes in the mouth. Improper nerve and muscle function of your jaws will eventually lead to other digestive problems. In some patients, we even see signs of respiratory problems develop. This may be due more to a component of the pain cycle, but it is obvious.
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