Posted by LarryB (216.196.148.219) on January 02, 2001 at 14:07:09:
Hi,
I've had CH's for 25 years and I'm 6 weeks into a new cycle. I just found your web site and next to O2, some compassionate understanding is the next best thing. I've never known another CH sufferer and even though friends and family are sympathetic, they just don’t know what it’s like. Calling this a headache is like calling a hot poker to the abdomen a tummy ache.
I’m now in the point of the cycle where it’s all I think about and I hate it. I hate having to arrange my life around this.
I’ve been going through the archives looking for new ideas and found a few I hadn’t heard of. Water, water, water is one I started yesterday. O2 works best for me except for the worst ones, and nothing seems to work for those. I try to avoid the meds for aborting the CH’s for fear of long terms side effects and they really don’t work for me anyway. I don’t use Imotrex injections because I have high blood pressure and I’m afraid that the spike in blood pressure could cause me to stroke out. If I were a chronic sufferer, I’m sure I would think differently.
Years ago, for the first cycles, I was given sansert, which did nothing and was very nasty. I pretty much went through that cycle untreated, which lasted 6 months. The next cycle I went to a neurologist and he treated me with prednisone, 60 mg/day-a week on and a week off. That was pretty nasty too (I gained 40 pounds) but it worked. I hit my limit with it, and the Doc wouldn’t give me anymore, but I was on the downside of the cycle so the worst of it was over.
The last time, 4 years ago, I went to some cold hearted neurologist who was the biggest a**hole I had ever met. He prescribed Imotrex injections (even though my blood pressure was through the roof) and told me to come back in a month. I asked a nurse friend to show me how to do the injections and she said with my BP so high, it would be very risky to use the injections. She suggested a pain clinic at the University hospital. I liked their concept of treating the whole person. They use an M.D., a physical therapist and a psychologist to help cope with the pain. The M.D. was very compassionate, which was totally different than anyone that had treated me before. He started me on Imotrex pills, but they took too long to work. He then tried verapomil and O2. That helped, but not as much once I went into the peak of the cycle. He added doxepin and melatonin to block the re-uptake of seratonin, because I was going days without sleeping for more than 45 minutes at a time.
The physical therapist didn’t help much. He tried to massage the pain away, but it made it worse. I’m one of those that doesn’t want any sensory input during a CH. The first psychologist didn’t work out because he was trying to convince me that I was imagining the pain. I don’t know what that was about. I don’t know how a person can imagine pain that you didn’t know existed. The M.D. sent me to another psychologist on staff that helped a lot to cope with the obsession of pain. She started having me do some relaxation exercises and trying to do physical exercise everyday. One thing that seemed to help was taking the dog for a couple of 30-60 minute walks everyday. It really seemed to help clear the mind and I found that when I did get upset about something, my first thought was to walk it off.
Anyway, I glad to have found this group and I’ll have many questions to ask about your experiences. I’ll ask them one at a time so I don’t start a confusing thread. Here’s the first one: Can anyone point me to some info on food triggers. I’ve seen some info for migraine triggers, but I don’t know if they are the same for CH’s. When I am having a CH, I go through the cause and effect obsession of what may have started this one, but I don’t come up with anything consistent. Is chocolate, cheese, nuts, etc. a trigger for anyone else?
Thanks for being there,
LarryB