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writer
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Various and Sundry
« on: Apr 9th, 2004, 10:15am » |
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Good morning, all -- I hate to admit how long I suffered from cluster headaches because I don't want to discourage you. (However, I've got some encouraging stuff to tell as well). The fact is, I had cluster headaches twice a year for seven week stretches for a little over 40 years. The last bout was about five years ago, so my fingers are crossed.
During that time I had little to no help. I tried Sansert for a while, but I hear it is no longer sold. (I can understand why--it's an extremely close chemical relative of LSD and has hideous side effects which made me give it up before long ) On one occasion when I was reduced (literally) to crawling around the floor, my sister took me to an ER. Some angelic nurse saw me pacing the busy waiting room dressed only in a nightgown and sweater, took pity on me, escorted me immediately to the back, turned off the lights, sat me in a chair and pumped in the Demerol. She said she knew immediately what I had, when she saw me.
I was a single parent raising a son during those years. I remember the agony of having to pretend to work while in the midst of an attack. OhmyGod. I would leave my desk and pace the huge halls of the municipal building, trying not to clutch my eye too noticeably. Nighttimes I won't mention--you all know the agony of waking up during REM sleep in unspeakable pain.
About a dozen or so years ago I was writing in my journal when suddenly I found myself writing stark memories of sex abuse as a very young child when I lived in a roominghouse with my employed widowed mother. While she was at work, I was sometimes abused by the very people who were allegedly caring for me.
When this happened I decided that in my case, that had to have a lot to do with the clusters. I also decided either I would be able to find help for myself, or I would end my life. Through a series of fortuitous events and with some input from God,
I'm sure, I ended up the psychotherapy patient of a woman expert in the field who cut her fee in half so I could see her. What an amazing blessing that has been.
I am not saying or even implying that any other sufferers were abused early in life and that is the cause of their clusters (although that's certainly a possibility). I am only describing my own case. I was surprised to find in the literature that early abuse as well as severe neglect can and do literally alter the neuronal structure and activity of the brain. However, fortunately, both can be favorably altered in later life through psychotherapy--although it's not an easy task. It's hard work as some of you may know.
My own experience has led me to the research trail. Speaking of which: under the aegis of NIH, there is a so-called Pain Research Consortium. Their most recent grants were to study things like low back pain. Now I suffer from that myself, but it seems to me the Pain Research consortium needs to study cluster headache more! I will get in touch with them and suggest that when I have time. Some of you might do the same.
Also in connection with research, I noticed that a new brain sciences center is planned to open in Leipzig, Germany, in 2006. Interestingly, it will combine the efforts of behavioral scientists and neuroscientists. It combines the Institute for Psychological Research in Munich and the Institute for Cognitive Neuroscience in Leipzig. The two groups are not happy about the coming combining of their efforts.
However, I saw an opportunity and wrote to the leaders of both scientific groups. Here's most of what I wrote: "It occurs to me that study of the etiology of the cluster headache would most happily and naturally unite both your main fields of interest and study, perhaps with highly useful results."
"Cluster headache is probably the strangest, least studied, most painful syndrome afflicting humans (as characterized by London neurologist Peter Goadsby). (Please see the clusterheadache web site.) Among other strange things, the condition is characterized by an amazing periodicity. I will continue to hope that its etiology may become something the new Center will take on, under the direction of both scientific groups. With best wishes,"
Chances of anything coming from this are, of course, slim. However, I am nothing if not a) curious and b) undaunted. I hope you will help with your own research and ideas. I tried to join OUCH this morning but didn't succeed in getting registered. I will keep trying.
A fellow sufferer with enormous hope,
Writer
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Superpain
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Re: Various and Sundry
« Reply #1 on: Apr 9th, 2004, 5:49pm » |
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I'm pretty sure your headaches aren't going to discourage anyone around here. 
Personally I'd be rather content with 7 week cycles even if they came 3 or 4 times a year.
There are chronics here that have them several times a day for decades without relief, and their stories coupled with the fact that they are able to survive are of course sad, but at the same time inspirational.
From all my research that has come mainly from this site and talking to others, I'm pretty sure I'm not alone in coming to the conclusion that there is no common cause derived from anything we have done or gone through in our lives. We are an infinitely diverse group of people with unique cultures, experiences, environments, careers, etc., with only one universally common thread, and that is CH. Personally, I believe it is a birth defect that so far is pretty much something we just have to deal with. Perhaps someday they will be able to identify and treat it, but untill then medication treatments are our best hope.
But I applaud you for exerting yourself to spread the word and call attention to the need for research! Let us know how it goes!
And welcome! 
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Chris
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Charlie
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Re: Various and Sundry
« Reply #2 on: Apr 9th, 2004, 11:13pm » |
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Welcome aboard and you will find lots of information about dealing with this horror. You won't find posts about easy to grasp triggers or abuse as a cause. You will find that we handle cluster stories well and most of us have come to the conclusion that CH is the result of some sloppy engineering.
Thanks for you post and feel free to stick around.
Charlie
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Pegase
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Re: Various and Sundry
« Reply #3 on: Apr 14th, 2004, 1:08pm » |
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on Apr 9th, 2004, 10:15am, writer wrote:
I am not saying or even implying that any other sufferers were abused early in life and that is the cause of their clusters (although that's certainly a possibility).
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Can you explain your theory more in depth... and do you think there's is a relation with the hypothalamus... im just curious.
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HypnoticFreddy
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Writer,
While I do not know so much about the early trauma-type experience and its correlation to CHs or other neurological problems, I too applaud you in at least taking a professional outlook, by contacting leading researchers who are trying to treat or better understand (which unfortunately is impossible) these awful headaches.
Yes we learn that there is activity in the hypothalmus.
Yes we learn alcohol and nitroglycerin trigger CHs.
We know other brain functioning during attacks.
But why do you get them and your brother doesn't?
I find it amazing that only 7% of CH sufferrs have any family members who also suffer. Certainly mental illness (depression, manic depression, schizophrenia, etc., is not like that).
What came first? The chicken or the egg?
I think with CHs, we are dealing with a similar question.
People like Peter Goadsby and many others are serious figures in researching and publishing on CHs. But...Will they find reasons?
I am not sure that is their intention. I am not extremely familiar with all of Goadsby's publications. I do recall seeing some PET imaging studies of CH brains during attacks vs. no attacks. It certainly shows something. It is interesting and maybe some of you can reference me to some other of his notable publications.
As CH victims. We need to do what is most important.
Management. Reasons, are like asking, "Do you believe in God?" It is almost irrlelevant.
Let's at least see if we can figure out the Neurology of them and perhaps we can better target those areas with medication (and I totally believe that all medications unless certain natural plants) are poisons. Oxygen is a real great thing due to it's extreme low toxicity.
It is such a big issue. I would love to go to the convention so I could chat with some people about this.
I am done.
-Scott
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| « Last Edit: Apr 14th, 2004, 7:41pm by HypnoticFreddy » |
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floridian
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Writer,
there has been some discussion here about abuse as a factor in cluster headaches. You are correct that this can change brain function, and for some people it may be a factor. But genetics have been shown to be a factor, and I suspect brain trauma (physical) is also a factor.
Anyone who has been abused may benefit from therapy. Maybe it will help with their clusters, maybe not. But it will probably help them in other ways, so is worth advocating.
I am putting my money on changing metabolism, but am not ruling anything out. Cluster headaches are not very well understood. Thanks for writing to medical decision makers to call attention to the need for more research into cluster headaches.
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floridian
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Quote:| I find it amazing that only 7% of CH sufferrs have any family members who also suffer. |
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This sounds like a small number, but 7% (.07 probablity) is much higher than the rate of clusters in the general population (1 or 2 per thousand - .001 or .002). Using these numbers, a person is 35 to 70 times more likely to get clusters if a relative has them. The total risk is fairly low, but the relative risk (odds ratio) is very high.
I do think there are multiple genes involved. To use cards as an analogy, its not like getting a single Ace or not; to get clusters, you need to be dealt a royal flush. If one person gets dealt from a normal deck, and the other from a Pinochle deck, who is more likely to get the royal flush?? With a pinochle deck, it won't happen every time, but it will happen more often.
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| « Last Edit: Apr 15th, 2004, 10:53am by floridian » |
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