Posted by Terrie on September 16, 1998 at 15:24:16:
Up date - my message got through to Oprah! Let us hope her staff pays attention.
**just reviewed my post - I seem to have written the great American novel here, so hope you have your reading glasses on - here goes**
Let me introduce myself. I am the wife of a chronic CH suffer. During the 20+ years of our marriage I have experienced it all [or thought I had] until I read some of these postings.
I do have some questions, comments and observations to share with you all. Let me begin by saying that I am genuinely impressed by how you all support one another. It is so true that very few people understand what CH suffers endure on a daily [or nightly] basis.
My husband is 43 years old and has suffered from migraines and Clusters for over 20 years [yes it is possible to suffer from both]. He has been to various neurologists, doctors, specialists’ etc. ‘Help’ from them has spanned the range from - “Oh, it’s just a tension headache {he cut ALL med's} - to “don’t self medicate with your codeine/fiortal at home - at the first sign of pain come in an get a Demerol shot!” This was just great advice - seeing that he doesn’t have a single day without a headache! Just what we needed, to have a Demerol addiction to add to his other problems! I have to be aggressive with our insurance company to get them to refill pain med.’s - thankfully, we have a doctor who helps us in our struggles. I even had one pharmacist out and out accuse me of wanting the pain drugs for myself to get High! I am not a wallflower by any means and I basically told him to get off - in none too polite terms!
Some of his headaches do start out as tension headaches but if he does not treat them aggressively from the VERY beginning they will ALWAYS develop into regular migraines. Clusters [we have dubbed them Monster Migraines] occur about once every 4 weeks or so and last 2-3 days at a time. Imitrex does help for both types, but the effect wears off after about 2 hours. Our doctor gave him a sample dosage of Migranol but it did not relieve the pain. Interestingly enough though when he couldn’t stand the pain any longer he took an Imitrex shot on top of it, and we don’t know if it was the combination or what - but his CH tapered off and did not return.
He has tried the oxygen, beta-blockers, calcium blockers, anti-depressants, erostant [sp] type med.’s, anti-convalescents, and so many others with little or no success. For now his arsenal consists of ice, codeine/fiortal, Imitrex, hot showers and shear guts. The Pednisone I have read about here is a new one to us, as well as the new Ritalin therapy - so we will look into them. The air-conditioning trick sounds promising as well. Thanks
Now a personal note of support to those of you who live with - but not “live” - the pain. The helplessness is the hardest part for me to bear. When he is in the throes of a CH he sometimes asks me to sit with him trough the worst of it (I know some of the suffers have to move around - but mine can’t get his head up off the pillow). I think he needs to feel the love at close range - or he would end his life rather than endure another minute, hour, or day of pain.
We also have a son who has lived this nightmare with us since his birth. Helping him cope was a daily lesson when he was younger. At first he was afraid that his father was going to die because of the pain
[and his request for a gun when I asked if there was anything I could get for him - within earshot of our son] didn’t help matters. Then he went through a stage of saying he had a headache to get attention. I told him over and over again that his headache were very different from Daddy’s and that he was tired or had eye strain [which was true - if there is a God in heaven my boy will NOT this curse!] and so on. He is 12 now and has learned to cope - in his own way. Maybe the hardest part for him is that his father is on edge all the time and thus makes him hard to live with. Come to think of it maybe that’s the hardest thing for me too! As an adult I know not to take the surliness personally - but it is so hard for my son, the rejection he feels when his father snaps at him is hard to watch. So as you can see the process is ongoing.
As for the physiological “causes” I think that is bunk. My husband was sent to a psychiatrist, and after interminable testing was told he was ‘mentally’ fine and if we had a doctor who would continue the med.'s, there was no reason to keep paying him the large fees! He said that the clinical depression was definitely a direct result of chemical changes within the body - induced by the chemically caused migraines. I also have no doubt that there is a strong genetic factor involved here. And my husband had the good luck[?] of having both parents as migraine suffers!
One last thing. Have any of you MEN noticed your beards grow faster right before a bout with Clusters? This is something we have observed in my husband - and wonder if he might have a hormonal trigger that could be identified. The timing of “monsters” monthly seems to support this theory. Have any of you had a work-up by an endocrinologist [sp], or hormone specialist?
Once again, thank you for “listening” and I will be a regular visitor here and hope I can be as helpful to others as you have.
Here’s to not letting the “monsters” win!
Terrie