Posted by James Fairhurst (65.33.20.132) on December 16, 2000 at 23:33:13:
Hello everybody,
How nice it is to find a place to 'meet' with fellow sufferers. I am sure that there are others worse off than me and others that are not as badly affected. I live in Florida, but am originally from the UK. I started having attacks when I was 19, back in 1983. I often wonder if they were triggered by my teenage experimentation with drugs (pot, coke, acid etc etc.) Anyway, for 8 years, I couldn't find out what was wrong with me. I went to neurologists who were unable to diagnose me. They tried treating me for migraines, unsucessfully. I tried alterantive therapies like acupuncture, reflexology, hypnotherapy, biochemic tissue salts and just about everything else you can think of. The only thing that brought any relief was an over the counter medication called Solpadeine, which is like Tylenol 3, except it is effervescent like Alka-Seltzer and is very fast acting. To this day, it is my primary weapon for attacks. In 1991 I moved to the USA and met the future mother of my children. She urged and arranged for me to go to the headache clinic in Orlando, where I saw the late, great Dr. Bernard Swerdlow. He instantly diagnosed my headaches as chronic clusters and put me on Depakote and Lithium. These reduced the intensity and frequency of the attacks. Since then I have had some severe bouts and tried oxygen. I have noticed that the attacks get worse as the seasons change.
In the last couple of weeks, I have started getting really horrendous attacks that can last 4 or 5 hours or more... and the ones that have you thrashing about wishing you would die. I went for an MRI a few days ago; normal. I went to another headache specialist 2 days ago. He took me off the Depakote as my blood pressure is getting high enough for concern and I have gained more weight than I should have done. He has put me on a new pill, I think it is called Indocin. And Imitrex nasal spray. I am having some of the worse attacks ever. 9's and 10's on the pain scale. Oxygen and pain-killers barely touching them. I take valium to knock myself out. Wish I could get injectable morphine to keep at home for these instances instead of having to call an ambulance. Strangely, I do find that sitting in front of an a/c outlet can help a bit.
Fortunately, I have an understanding boss, I even had one very bad attack at work in this latest cycle. Funny how they say "Go home!" and you try to explain that if you were able to drive home, you wouldn't be rolling around on the floor crying out in agony. Anyone else relate?
Well folks, thanks for reading this and letting me vent a little. I look forward to making some new friends here that understand, and I pray that one day there will be a 100% bulletproof cure for us. Please feel to email me with your experiences and thoughts.
Regards to all.
J.F.