berk, Trigeminal Neuralgia is the medical name for 'the suicide disease' which it is nicknamed, because some patients find the pain so intolerable that they say it makes them ponder suicide. However, it is not as rare as you might think. My sister has it, but not every day. She'll go through weeks of a flare up, then it slowly fades away for maybe a month, then reappears for a few weeks before fading away again. She also does not get the excruciating shock like jabs constantly, but maybe several per hour, and it disappears when she is sleeping.

My daughter and I get a very mild form of it. Ours only occurs a few times a year, and we get the jabs of 'electric shots' and extreme sensitivity if a wind blows on our face, or anything touches it. Eating, drinking, brushing teeth, washing face or applying anything on the face is too painful to do, during a flare up. But luckily, ours only lasts for several days, several times a year.

Some people find pain relief when a doctor injects Botox into the Trigeminal facial nerve. But the link I'm leaving tells about a doctor who suffered from Trigeminal Neuralgia himself, for more than 20 years, before someone found a treatment that worked. Maybe you could send this to your daughter and see if she will ask to be referred to a pain specialist. http://www.bbc.com/news/uk-wales-23181650

Trigeminal neuralgia is considered by medical experts to be one of the most painful conditions known to humankind

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002644/

Medical article with in depth discussion about diagnosis, medical treatment, and surgical treatment.

First attempts of treatment are pharmaceuticals with carbamazepine included.

"Surgical treatments are generally reserved for patients with debilitating pain refractory to an adequate trial of at least three drugs including CBZ in sufficient dosage. The decision to perform an invasive neurosurgical procedure or minimally invasive stereotactic radiotherapy procedure should be based on the clinical presentation and not primarily on neuroimaging findings [Cheshire, 2005]. Some patients may request surgical intervention despite nearly complete pain relief by medication, in fear of eventual return or progression of pain over time. "

Microvascular decompression and gamma knife are options for surgical treatment.

"In gamma knife surgery, a focused beam of radiation is aimed at the trigeminal root in the posterior fossa. One year after gamma knife surgery, 69% of patients are pain free without additional medication. At 3 years, 52% are still pain free. The development of pain relief can be delayed (mean 1 month). Side effects are sensory complications in 6% that may develop with a delay of up to 6 months, facial numbness in 9–37% which improves over time and paresthesias in 6–13% [Cruccu et al. 2008; Gronseth et al. 2008]. Quality of life improves by 88% [Zakrzewska et al. 1999]. The main disadvantage of gamma knife surgery is the treatment expense that limits widespread usage making it a reserve treatment option for patients that cannot undergo open surgery or have blood coagulation problems (e.g. are receiving warfarin).

Microvascular decompression achieves the most sustained pain relief with 90% of patients reporting initial pain relief and over 80% still pain free after 1 year, with 75% after 3 years and 73% after 5 years remaining pain free. It is, however, a major surgical procedure that entails craniotomy to reach the trigeminal nerve in the posterior fossa. The average mortality rate ranges from 0.2% to 0.5%, and up to 4% of patients suffer from major problems such as cerebrospinal fluid (CSF) leakage, infarcts or haematomas. The most common complications are aseptic meningitis (11%), sensory loss (7%) and hearing loss (10%) as long-term complications [Cruccu et al. 2008; Gronseth et al. 2008]."

A layman's question: is TN necessarily a hereditary condition? I saw that tic douloureux was mentioned in articles on TN, and recall that a friend of the family had this and had partial paralysis of his face when the nerve was severed. This was 50 years ago, but the surgery seemed to have worked for him.

Is there ever a viral factor with TN?

Thanks,

Rick