I'm a retired civil servant living in HK, age 57, Chinese female.
I have Trigeminal Neurolgia for about 4 years, and have been seeing a neurologist. Tumour as cause of the illness was ruled out by taking MRI.
My case is rather special in that the pain occurs on different sides of my head/face in different years. At first it was on the right side. Later it was on the left side. Recently it changed back to the right side.
The situation was not too bad and could be kept under control by taking carbamazepine (at most 300 mg a day). Sometimes it was not even necessary to take the medicine; that's usually in summer.
Since middle of December 2008, the pain resumed and the medication seemed to have lost effect. I thought it was because of the cold weather in Hong Kong. I even took an "escape trip" to warm Bangkok but it didn't help.
I resisted taking more medicine because I know it's no good for the liver.
Since returning from Bangkok, the situation turned from bad to worse. I wonder if flying on planes was to be blamed, as there were strong air-conditioning in flights.
For a couple of weeks in January, severe pain occured even in the morning just after I woke up. That never happened before. A whole nerve from one side of the brain to the face ached. It was especially painful in a certain spot in the head, like someone drilling in the head. There was nothing I could do but to lie stiff in bed and waited for the pain to subside.
Throughout the rest of the day, the pain would occur again about ten times or so. Any slight motion might trigger it off, such as standing up, eating, brushing teeth or touching the nose accidentally. Speaking was a problem too.
Then I looked to traditional Chinese method for help. Although I grew up in a Chinese community, all my life I have trusted only western medicine because of my upbringing and education (I grew up in British colonial Hong Kong and graduated from the English-speaking University of Hong Kong). I never paid much attention to Chinese traditions of health care.
This time, under despair, I tried a traditional Chinese dietary method which is relatively well-known especially amongst aged Chinese women. The general Chinese belief is that one cause of headache is so-called "wind in the head". (I can't think of a better translation for it.) One way to remove the "wind" is to eat a dish: double-boil the head of “Big Head Carp fish” (commonly sold in Hong Kong markets) with a Chinese herb (called "Tin Mah" in Cantonese which is the dialect commonly used in Hong Kong, or “Tien Mah” in Mandarin/Putonghua which is the official language of mainland China) for about two hours. I took it and it worked miracle within a couple of days! My pain has been substantially reduced and I can resume normal daily activities happily. I still continue to eat that dish every other day. I think I can reduce it to once a week later on. At the same time, I continue to take 300 mg. of carbamezepine a day. (Before I tried the above-mentioned dietary method, I felt severe pain even though I had taken the same medication.) When I am sure that my condition has stablizied, I may experiment reducing the medication when the weather in Hong Kong gets even warmer.
I know the above may sound unbelievable to people in the west. But I wish to share it anyway because I know how dreadful TN is. I also understand that there may be different causes of TN, that the method I described above is probably only good for a special case: when the TN is caused by "wind in the head".
Looking back on the causes of my TN problem, I now have the following theory.
My pain started before my retirement. In my workplace, my seat was directly below an air-duct and I always felt a strong current (from air-conditioning) on my head. I often joked that I should wear a hat in the office but I never did. I had that seat in my office for about 8 years before the TN pain began. I now think that the strong air-conditioning current in the office was the underlying cause of my TN problem.
More recently, I took a sightseeing trip to Dubai in December 2008. One day I took an open-deck sightseeing bus and exposed myself to strong wind for hours. I think that was the recent cause for my severe pain after I returned to the cold weather in Hong Kong.
Now, I always wear a hat whenever I leave my house. This is to protect myself from the air-coniditoning which is everywhere (on subways, in shopping malls etc.) Also, I've given up my habit of washing my hair immediately before going to bed. According to traditional Chinese belief, washing your hair before bed can easily cause headache when one grows older; but I never bothered to follow that advice in the past. Also, remember to dry your hair as much as possible immediately after washing. (If blow dry, use hot air not cold air.) Don't leave your hair damp for lengthy periods of time.
I think the above recipe of "Head of Bighead Carp and Tin Mah" is not very helpful to people in the west unless I can also give the scientific names (or common names as used in the west) of the ingredients. I've searched the internet and found these names for Tin Mah, but I’m not sure of their correctness: “Tall Gastrodia Tuber”, “Rhizom Gastrodiae”. As for “Big Head Carp”, my impression is that western people do not eat that fish and it may not be available in western country. (Perhaps in Chinatown, I don't know.) The ingredients “hea of Big Head Carp” and “Tin Mah” are very easily available in Hong Kong and they are not expensive. To make a dish, the ingredients cost around US$8.
In subsequent posts on this blog, I'll give more information on how to cook this dish.