Posted by sailpappy (205.160.191.178) on April 11, 2000 at 09:51:16:
This is from the letter I wrote to my newest nuerologist before I started treatment through his office,
I wrote a fax to the doctor to let him have advanced information so he could utilize our time to the best advantage, He hadn't been given it and I had to sit and let him read the whole fax was 4 pages.
I hope this is CH related enough? Sailpappy
I will now list the Drugs that I have received to date, to the best of my ability.
My original diagnosis was Sphenopalatine Ganglion Neuralgia.
I.V. Histamine PO4 3hrs. x 3days---set off headache but didn’t help at all.
Tegratol---- I was on this a few weeks and it turned me in to a “Raving Madman” Never slowed the attacks
Sansert—Shrank the veins in my body down to almost nothing and never slowed the attacks. I was way over prescribed this one and worry about the Fibrosis of the Kidney side affect.
Elavil—never slowed the attacks
Prednisone theraphy—Many times and was way over prescribed this on too! I developed steroid acne and gained lots of weight but never really helped the attacks
I.V. Histamine P.O.4-- I had this 3 more times and it never helped
Thorazine—didn’t help the headaches just knocked me out and when I came to I had rebound headaches
Caffergot—seemed to help abate the attacks but didn’t work for long
Sublingual Ergotamine—helped at first but didn’t last long
Valium—Helped some but I was worried about addiction with this drug
Verapamil—Slowed the attacks to around 3 a day for about 2 years on the first go round, on the second it never helped at all
Demerol/Vistaril—100mg/25mg would put me out for an hour sometimes a little longer then rebound headaches
Demerol/Phenagrin-- same as above
Indomethacin-- never helped
DHE-45—Never helped
Talwin—helped but never stopped the pain-just took the edge off
Indocin—never helped
Periactin---never helped
Inderal—never helped
Cardizem—never helped
Methadon—almost killed me
Nubain—helped on the first few injections but developed an allergy to it
Procardia—almost killed me
Clonidine helped but 8 days into it my BP dropped out on me and I had to stop taking it.
I was then prescribed Depakote whic I didn't take because of the Hepatic risk- I have Advanced Hep C.
I still have an unopened script for Nuerontin that I won't open and try until the next heavy cycle within my cycle (I'm Severe Chronic-Avg. 7 attacks a day for over 31 yrs.)
Sumatriptan—didn’t help, caused sever angina! I waited 10 years for Glaxo to get this one approved and on the market-what a disappointment!
This is about all I can remember off hand and I have scanned through the records I have to verify all of these.