Posted by Laurence Longe on June 14, 1998 at 08:16:05:
I am in my third CH cycle. The first was in late Spring/early Summer 1991. The second, same time of year in 1995. And now it's started again begining of June 3 weeks ago.
The first time it took about six weeks (a week of my trying to believe it would go away before seeing the doctor - stiff upper lip approach; one week under the doctor - pain killers round the clock; then two weeks under the neurologist - cafergot and MRI scans etc; before a different neuro prescribed Lithium Carbonate 400 mg 3 times a day (this was built up over a couple of weeks starting with 2 a day.) I also continued to take strong painkillers (Co-proxamol Dextropropoxyphene and paracetomol 8 tablets) round the clock. This worked or at least seemed to work brilliantly. I continued to get many of the sensations of an attack - tingling in the forehead, sensations around and in my right eye, some slight level of pain towards the back of my head on the right side, throughout the days and weeks that followed but the demons never broke through. I tailed off the medication and stopped everything by about November 1991.
Second time round, my doctor who suffered from migraine suggested I try "Immigran 50" tablets instead of nasty old Lithium. The Immigran had a remarkable and extremely painful effect on the attacks. Each attack occured almost exactly 4 hours after taking the Immigran tablet and the pain accompanying each attack was almost unbearable. After 4 weeks or so of hell, the doctor accepted that CH was not the same thing as migraine and put me back on Lithium and Co-proxamol tablets. Again, joy of joys! Relief from pain and just peculiar head sensations for several months.
The monster returned 3 weeks ago. I went straight round to the doctor, asked for and got Lithium and Co-proxamol tablets. They are having some effect, but the beast is breaking through at least once a day in the late evening (say 9.30 pm)after I have had a cat nap, or at about 1.30 am after I have been asleep for about an hour.
Last evening at 9.30 pm was hell. After the usual warning signs, I got up and went outside to walk (pace up and down) in my garden. It was raining but I didn't care about it. By about half an hour in, I could hardly stand up anymore. My right eye was so swollen it was almost closed. The pain was crashing through in wave after wave. My wife was getting very anxious because she wanted to help in some way but couldn't. If she had stayed with me, I think I would almost have broken down in tears. I just kept trying to put one foot in front of the other and reminding myself that it would soon end. After 45 minutes it started to lift. I went inside feeling bruised but relieved and then horror, after 15 minutes it came back with a vengeance. I was rocking back and forth - anything to try and distract me from the pain. It finally began to lift at about midnight. The only good news is that I slept well. This morning, I feel as if I have been several rounds in the ring with a heavyweight. I just hope tonight is not so bad.
Anyway, back to the question. I'm off to see a neurologist next week and I intend to ask him about Oxygen which many CH sufferers seemed to have tried with a lot of success. I found the comments here about Diflucan extremely interesting, so I will try that this week before getting to the neuro (I think I would try almost anything!). Any other ideas?
Many thanks and sorry about the "war story".