There has been a lot of interesting materials brought out lately especially involving cervicogenic causes of TN, but in reading a lot of personal stories, it occurred to me that a common theme among them is very consistent with Sjogrens Syndrome. As many of you may know, Sjögren syndrome (SS) is a chronic, inflammatory, autoimmune disease characterized by lymphocytic infiltration of exocrine glands, leading to dry mouth and dry eyes.. Peripheral nervous system disease, manifesting commonly as peripheral sensory neuropathy approximately a quarter of the patients. Less frequently, cranial neuropathy can also occur, which is especially likely to involve the trigeminal nerve.
There was a fairly recent (and overlooked) study done establishing that link.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2812738/
More recently Johns Hopkins has been looking into it and in a recent article stated:
"Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.
Medicines which may help alleviate symptoms in small-fiber neuropathy may also have efficacy in trigeminal neuralgia. Such medications may include a class of agents which are typically used to treat seizures, and include gabapentin, topiramate, andpregabalin. In seizure disorders, paroxysmal and irregular bursts of electrical activity in brain nerves may lead to propagation of seizures. Similarly, in Sjögren’s neuropathy, irritative electrical signals produced by nerves in the skin instead of the brain, may similarly contribute to pain. Just as anti-seizure medicines can dampen electrical activity of brain cells, the dampening of electrical activity produced by pain-fibers may ameliorate burning pain. It is important to note that use of these symptomatic medications does not target the neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered."
This doesn't mean DIFFERENT treatment just additional treatment. Which may mitigate a number of other complaints of fatique, general pain during a flair etc. (not to mention give credence to others such as "dental pain") I'm curious how many here have had that discussion, been diagnosed with SS, or for that matter ever had biopsies done for "small fiber neuropathy" It also explains why so many are getting relief from the Sodium Channel blockers. It also explains why opiates make symptoms WORSE for so many
There are blood tests for Sjogrens but a negative doesn't mean you don't have it. It may be worth a look for many of us. If we can eliminate one more cause (or treat it if it is) we can at the very least improve chances of a surgical approach (or avoid an unsuccessful outcome)