Posted by Robert G. Frie (63.23.86.41) on March 06, 2001 at 21:07:24:
In Reply to: this is my final word on this subject posted by jonny on March 06, 2001 at 20:03:56:
Here is a copy of my E-Mail of 11-29-00 to Dr Andrew Weil's Self-Healing Magazine ttna@csionline.net:
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Dear Dr. Weil:
I don't know what you may have had to say about this condition, but for what it's worth I have a few comments about my own experience with traditional medicine and self-treatment. Maybe alternative medicine can profit from that experience:
Possible Source of Infection
In late 1997, I may have gotten initial sinus infection in the San Pedro Elks Lodge swimming pool, which the County Health Dept later closed down for bacterial contamination.
Pretrigeminal Neuralgia (Cluster Headache)
Symptoms first appeared in Jan 1998: During a luncheon meeting at Paramount Studios, I suddenly found myself unable to focus on or read the menu. While driving back to my office on the freeway, I began experiencing flu-like symptoms, became nauseated and had to pull over to the side and park for awhile. The flu symtoms lasted about 6 weeks, with severe head cold and sinus blockage (right sinus and turbinates not draining). Vision problems persisted and grew worse. I used oral antihistamines and inhalers daily. I was sent to BayShores Medical Group by Dr. Consuelo Franco MD for CAT-Scan and MRI (nothing found). She prescribed the anti-allergenic Claritan. No improvement. She also perscribed Methylprednisolone (a steroid), and there was some improvement.
March 1998 Flu & head cold symptoms subsided, although vision problems remained.
March-April 1998 in Manila, the Philippines: Still using anatihistamines to clear my head. April 6: Experienced extreme vision and focus problems at a restaurant. Not only could I not read the menu at supper, but I could not even see the meal on my plate.
April 20: At Manila Airport, I noticed that the red LEDs in airport signs were blurred, but that I could read all other signs.
May 1998, back in California, the flu & head cold symptoms reoccured. Sinuses and turbinates not draining, the right side of my forehead and the orbit of my right eye aching badly. The pain increased daily. I consulted again with Dr. Franco, who sent me to an ENT Dr. Norman Cantor MD, and to Dr. Richard S. Gluckman MD. Dr. Gluckman, a neurologist, thought my problems were psychosomatic and that I wasn't getting enough sleep. He wanted me to take Dilantin and Prozac, which I did not do. Cantor diagnosed deviated septum from an MRI and from my complaint that I couldn't breathe through my nose (I knew from pushing a Q-Tip up my nose that, if I could breathe, the headache would go away), and sent me home wired for sleep studies. But I couldn't sleep with all the wires.
June 1998: Right facial pain kept increasing, and I found myself addicted to the antihistamines, which only gave me temporary relief anyhow. My forehead throbbed continuously, and the pain was unbearable. Right nasal passage had a continuous burning sensation.
July - Sept 1998: Aforesaid symptoms of headache and right facial pain all worsened.
Deviated Septum
Oct 1, 1998: Out-Patient surgery by Dr. Gregory J. Szal for deviated septum at Bellflower Medical Center. While in recovery, the entire right side of my scalp from front to rear (Ophthalmic branch) in extreme pain, and the upper right molars of the Maxillary branch of the Trigeminal nerve were aching severly. I returned to Dr. Szal, and he diagnosed Trigeminal Neuralgia. He told me to find a neurologist.
Pre-Trigeminal Neuralgia / Fifth Cranial Nerve Neuralgia (Cluster Headache)
I returned to Dr. Gluckman, and he refused to help me unless I took Dilantin and Prozac. I immediately gave up on him, then took to the Internet and found the Trigeminal Neuralgia Association and began a thorough reading of their literature and communicated extensively with the TNA support groups for assistance. They recommended Dr. Ronald Young MD (a Gamma Knife surgeon) of Good Samaritan Hospital in L.A., who referred me to Dr. Steven B. Graff-Radford DDS, the top man at the Cedars-Sinai Pain Center in L.A.
Dr. Graff-Radford started me off on 80 mg of Prednisone per day for 5 days, then to 60 for 2 days, etc. The pain stopped immediately. After this course of treatment, the pain returned, but was less severe than before. He then put me on Cafergot, and tried to put me on Sansert. I refused to take Sansert, however, because I knew it was bad news from the literature I was reading.
The TNA recommended that I go see an ENT working on Trigeminal neuralgia, Dr. Albert S. Goh MD of Tustin, Calif. I went to see him and described my condition. When I finished he had tears in his eyes, because he had had the same horrible symptoms. He had solved it with Gamma Knife surgery and hoped that it would never come back.
Apr 99: P-K-5, aspirin, and Ibuprofen used to control pain, but any effectiveness quickly abated. I began applying the topical analgesic creame Capsaicin-Zostrix .075 to my forehead 4 times daily. The strong burning sensation of the cream soon subsided, and the effect probably depleted substance P, preventing the nerve from getting pain signals. This reduced the pain symptoms This worked for awhile, but was not as effective as I wanted. So I went to food grade Capsaicin, that is pure Capsaicin, with a Scoville rating of 500,000. Also tried Oxygen and ice packs.
May 1999: Acetaminophen, Pseudoephedrine, and the other treatments seemed to work only temporarily.
May 23 1999: Began taking MSM -- Methylsulfonylmethane -- at 3000 mg per day. I awoke at midnight with throbbing facial pain. I continued with pure Capsaicin and Acetaminophen, and with intermittent doses of Prednisone.
June 12 1999: Started vitamin B-12 at 7000 mcg per day.
Jun - July 1999: Varied MSM from 4000 to 12000 mg per day. Cough caused considerable pain, but the overall pain levels were decreasing.
Back to Work
July 1999: Returned to work. No longer constantly needing rest or treatments, but continued regimen of MSM and Capsaicin, as above.
June 2000: Started once-weekly vitamin B-complex injections: B-1, B-6, and B-12. After Sept 2000, began twice-weekly injections: Noticed hair on head thicker and oilier now. Taking Capsaicin now only if an occasional flare up of pain (once-a-month).
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