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ozzythaman
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some thoughts of cluster headaches
« on: Apr 21st, 2003, 7:30pm » |
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Hi, I just stumbled across this site and found it to be a great coincidence with my physical features, I'm right now sitting in front of my computer at 02:00AM and will wake up in 6 hours, i do not suffer from headaches and do not know anyone who does chronically, so please take your time to read this message, as i have absolutely nothing to gain but many hours of sleep to loose.
where to begin... i'm 23 years old, male, live in Turkey, and I have some physical "features" that would make sufferers of cluster headaches only feel worse if i wrote it here right now. My features and daily habits (like long sleep) also sound strange to every person that has ever heard of them..
I am a soon to be engineer and a problem solver from birth. I've read through some of your documentation, possible reasons for cause and other topics as serotonin and i have some thoughts;
- Solution to the disease will be found by finding cure to physical difference that exists between sufferers and non-sufferers.
- Finding a difference between sufferers and non-sufferers is impossible without participation of non-sufferers.
- Since this is a kind of rare disease, i think possible profits from medication are not very great (From medicine industry's point of view), that is why an important role in finding the solution must be played by sufferers themselves and coordination aids like this website.
- The survey in this site is a great tool. But it has some great flaws, here are some;
after all that has been said of serotonin and sleep, there is nothing about regular sleeping habits of the participants.
there is nothing about working habits (hours, load etc), physical attributes, exercising habits, RATE OF SICKNESS, ease to become sick, sensitivity to cold, sensitivity to illnesses, does participant consider his food healthy, any signs of lack of vitamines? and other habits (which i forgot a few minutes ago) <- like if they consider themselves to have good memory.
oh and usage of illicit drugs should also be asked for, LSD and MDMA (Ecstasy) have direct effects on serotonin while others have completely different effects, while marijuana may ease pain (<disclaimer goes here> . Besides usage: any overdoses of drugs or chemicals, or poisoning accidents?
as i've seen it the current concentrates only on sufferers' medication and their struggle to get rid of the problem. I think it should concentrate more on the source of it, we should go back to regular habits in life of participants and find detailed maps to find links between lifestyles, physical attributes (like hormones and more obvious) and the headaches.
For example "Age clusters first started" shows that 35% of participants' headaches began before the age of 20... A more detailed statistic would be helpful, something tells me that a great amount of sufferers may be experiencing their first headaches in puberty (when hormones go wild)..
and a note for more questions: any abnormalities experienced in puberty, like late or early beginning of it, amount of pimples, etc etc..
1. sexual orientation, sexual habits of adult participants.. (sex drive is a result of testosterone amounts in men)
2. statistic of hair baldening among the male participants along with same statistic among other male members in family (testosterone become DHT, dihydrotestosterone in the scalp and weaken hair follicles that fall after a while)
hormones run our body, interconnections are not yet fully known, links between testosterone and serotonin may or may not exists but learning that most sufferers are male was very interesting for me; i have had thinning hair since i was 18. My father is bald, but his started thinning at age 30. I think testosterone may have a finger on this...
what more should i add... as for my physical "features", my amount of headaches and amount of sick-days per year, are... low.
as for other habits;
I can easily sleep for more than 14 hours in a row, I consider 11-12 hours of sleep to be normal for me, my record is 19 hours straight..
I have a fast metabolism rate. (meaning it is difficult for me to put on weight).
I have thinning hair (the testosterone thing, i think i have more amounts of it than normal, this can be also connected with me beeing often very energetic and having a high metabolism rate (not sure about the last one)).
As with the seratonin-depression connection; i rarely have mood swings, and rarely become sad.
addition: theres a drug named NOOTROPIL, which i think is not available in USA (not yet approved), it is used by many patients of neurological problems around the world.. it has practically no sideeffects but does wonders on braincells.. look it up..
this is just about all i planned to write, it is now 3:27am and i've spent a total of 3 hours at a site about a disease i've never heard of.
Some people may tend to have this illness more than others, this is probably genetic but it can probably still be triggered by external factors. This is why i find a statistical analysis very important, to perhaps find a little link between habits, lifestyle, mental and physical features and Cluster headaches. one that perhaps normally is overlooked.
May god help you in your search,
Osman Darcan
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| « Last Edit: Apr 21st, 2003, 8:32pm by ozzythaman » |
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BobG
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Re: some thoughts of cluster headaches
« Reply #1 on: Apr 21st, 2003, 9:01pm » |
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Wow! where to start?
First it is nice that an outsider/non cluster sufferer has taken a little interest in this site.
Now, about what you said…………starting at the second paragraph…..I've put quote makrs around what you said.
Your physical "features"? Do your features keep you from getting cluster headaches? I don’t think physical features have anything to do with cluster headaches. To see our features go to Bob P’s picture page. We are all normal looking. Some more than others.
You said “Solution to the disease will be found by finding cure to physical difference that exists between sufferers and non-sufferers.” A physical difference was found a long time ago. Do a search for the word hypothalamus on this site.
Then you said “- Finding a difference between sufferers and non-sufferers is impossible without participation of non-sufferers.” Again, do a search for hypothalamus and you will find the difference between the sufferers and the no-sufferers.
“i think possible profits from medication are not very great (From medicine industry's point of view),” No kidding. The profits from Imitrex are huge! Why develop a cheap medicine with a low rate of return? This is America, the world’s capital of capitalism.
“an important role in finding the solution must be played by sufferers themselves and coordination aids like this website.” Done and done. From this website OUCH was born and has spread to many countries around the world.
Your 7th paragraph is to long to put in quotes. The answers are all at this site. Dig through the archives. Use the search button. All what you suggest has been discussed many times.
“illicit drugs” Hit the Search button Turkey Man.
“as i've seen it the current concentrates only on sufferers' medication and their struggle to get rid of the problem.” Without medication these headaches are the worst pain known to man (and women). With medication they only hurt like Hell. What do you suggest we concentrate on if not medications.
“I think it should concentrate more on the source of it,” We already know the source of it. And has nothing to do with “regular habits in life of participants, links between lifestyles, or physical attributes.” Why are you so obsessed with physical differences and attributes? Are you too pretty to get headaches. Or are you so ugly that that not even a headache wants to be near you?
"Age clusters first started". Go back and read the stats again. Before 20 is not puberty. (Except maybe in Turkey)
“any abnormalities experienced in puberty, like late or early beginning of it, amount of pimples, etc etc..” Why are you so obsessed with children?
“sexual orientation, sexual habits of adult participants” Search the archives. We have a variety of everything you may be looking for but this is not that kind of site.
“statistic of hair baldening among the male participants”. This one made me laugh. Does balding cause clusters or do clusters cause balding? And what about the bald or not so bald female sufferers?
“I can easily sleep for more than 14 hours in a row, I consider 11-12 hours of sleep to be normal for me, my record is 19 hours straight..” Instead of surfing for headache sites on the web you should be looking for a cure to your sleep problem.
“NOOTROPIL” “not available in USA (not yet approved)” “used by many patients of neurological problems around the world” Thanks but no thanks. I don’t think I’m interested in an un-proven drug used by nut-cases in third world countries.
“can probably still be triggered by external factors” Bingo. Beer!
“Some people may tend to have this illness more than others”. Right, some are called chronic and some are episodic.
“May god help you in your search” I don’t know anything about your religion but that should be spelled with a capital G. And God did help in our search. He got his Main Man DJ to start this site, which got thousands of people to contribute to finding a cure for this most horrible of afflictions. Hit the Search button Turkey Man.
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Mikey
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Re: some thoughts of cluster headaches
« Reply #2 on: Apr 21st, 2003, 9:10pm » |
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Go get em Bob!
Mikey, 
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CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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eyes_afire
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Re: some thoughts of cluster headaches
« Reply #3 on: Apr 21st, 2003, 9:16pm » |
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???
What just happened here?
???
head spinning...
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Not4Hire
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Re: some thoughts of cluster headaches
« Reply #4 on: Apr 21st, 2003, 10:51pm » |
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BobG: .....remarkable restraint.....
...why does this shirt have the sleeves sewn shut? ...and wtf? is with the buckles in the back?..... 
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jdownes
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Re: some thoughts of cluster headaches
« Reply #5 on: Apr 22nd, 2003, 6:43am » |
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I am a recent returnee to this website. And I have enjoyed and appreciated it. BUT, why take the time to whack a guy who was just spitballing about our condition. Just because he's not 'in the club' doesn't mean he might not stumble upon some crumb. Beating up anyone who has a odd observance does us all a disservice, because someone may have an AHA moment.
I think a more appropriate response is, 'thanks for your observations, any input is appreciated, MANY of the topics are covered on this site, etc.'
Alright, let me have it...
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ozzythaman
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Re: some thoughts of cluster headaches
« Reply #6 on: Apr 22nd, 2003, 8:40am » |
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I never expected to return here to defend my words to someone who obviously has tried really hard to get it all wrong.
I'm sorry if I ever gave the wrong impression, but with physical features, i never meant looks of a person, i was thinking more of inner workings of men, like hormone levels, health state, vitamins etc,
[Again, do a search for hypothalamus] ?
Hypothalamus controls generation of hormones among other things, this site's documentation says "such as enzyme activities, body temperature, hormone secretion, and some behaviors".
[The profits from Imitrex are huge! [...] This is America, the world’s capital of capitalism.]
Ok you're right, but something else crossed my mind: a cure would not be in the interest of medicine companies. So you still managed to find something to throw at when I was trying to say that sufferers shouldn't count on the medicine industry for a permanent solution, and instead join their forces.
[“an important role in finding the solution must be played by sufferers themselves and coordination aids like this website.” Done and done. From this website OUCH was born and has spread to many countries around the world.]
I dont even know why i'm wasting my time with you, you're already telling me something i've already credited you with, what is this pathetic urge you have to defend yourself, cant you see that you're only fighting yourself?
[“illicit drugs” Hit the Search button Turkey Man.]
I started reading your message and this is what i expected you to say. Calling a person who spends his time to help other by names is not something I come across everyday, I never thought there really was this kind of people in the world.
[With medication they only hurt like Hell. What do you suggest we concentrate on if not medications.]
Medications are important but they are stimulants of hormone productions and physical functions, they do not solve your problem permanently, i'm not suggesting that it's removed from the survey, as many people may use the results as guidelines and help.
[“I think it should concentrate more on the source of it,” We already know the source of it. And has nothing to do with “regular habits in life of participants, links between lifestyles, or physical attributes.”]
Oh, so sleeping disorders, hormone levels, exercising habits, stress, workhours has absolutely nothing to do with it? great! you should know better.. thanks for clearing that up.
[Why are you so obsessed with physical differences and attributes? Are you too pretty to get headaches. Or are you so ugly that that not even a headache wants to be near you?]
how old are you anyway?
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ozzythaman
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Re: some thoughts of cluster headaches
« Reply #7 on: Apr 22nd, 2003, 8:42am » |
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part 2:
[Before 20 is not puberty. (Except maybe in Turkey)]
I dont how I should put this.. homo sapiens sapiens really, REALLY has the puberty age of around 11-15 years. (i'm not even going to try to convince you, you my friend DESERVE to know it as "Before 20 is not puberty"
[“any abnormalities experienced in puberty, like late or early beginning of it, amount of pimples, etc etc..” Why are you so obsessed with children?]
not even close to funny, pimples in puberty are caused by fluctuations in hormone levels and remember that you are only a child when you are in puberty? (noo, not after 20) and any abnormalities of hormones as grown up may have had first signs as a child.
[“sexual orientation, sexual habits of adult participants” Search the archives. We have a variety of everything you may be looking for but this is not that kind of site.]
testosterone and oestrogen (male and female sex hormones) directly control adult persons sex drives.
thank god i'm almost finished with your message, please dont write me anything less than constructive.
[“statistic of hair baldening among the male participants”. This one made me laugh. Does balding cause clusters or do clusters cause balding? And what about the bald or not so bald female sufferers?]
yes aint it funny indeed, baldening hair is a visual notice of excess testosterone in the scalp. i think i wrote that.. yes i did..
[Instead of surfing for headache sites on the web you should be looking for a cure to your sleep problem.]
are you just pretending to be narrow minded?
[Thanks but no thanks. I don’t think I’m interested in an un-proven drug used by nut-cases in third world countries.]
You really are pathetic, why am I bothering.. for everyone else: it's not unproven, nootropil (see: piracetam) is a prescription drug available in whole europe (among other regions), it is a nootropic agent that is used in treatments of patients with neurological problems (like downs syndrome, paralysis, uncontrolled muscle shaking and if i remember correctly MS also), its way of effecting you is not fully known, that is probably why it's not approved in the US. So much for third world country huh?
an additional drug with possible effect is MELATONIN (it's either a hormone and/or drug) that regulates/stabilizes the sleep-wake cycle of the body.
[“May god help you in your search” I don’t know anything about your religion but that should be spelled with a capital G.]
So you say, but I don't think like you do, god is a title, a word that can be twisted and turned, applied to other religions and written in plural, while you should agree that it should only apply to one and only. In Islam they have solved that problem.
Let alone you trying to alienate, make fun of and shut out someone who has a different religion than you, you probably don't even know that in Islam and Christianity, people pray to the same God. I, on the other hand, have known this for more than half my life.
This is why i can still forgive you.
cya,
Osman Darcan
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Bob P
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Re: some thoughts of cluster headaches
« Reply #8 on: Apr 22nd, 2003, 9:53am » |
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I read your post and have to admit, I thought the same thing BobG did. Everything you mentioned has already been considered and is covered in great detail in the medical articles.
Thanks for your effort but I don't find anything new to consider from your post.
BobP
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"SHUT UP HUB!"
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catlind
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Re: some thoughts of cluster headaches
« Reply #9 on: Apr 22nd, 2003, 11:35am » |
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Ozz, the one thing that you do point out is the surveys.
We are currently in the process of upgrading the data by creating a database of information that will include a great deal of questions not already on the survey.
Your interest is appreciated, at least by me , but unfortunately both Bobs have their point in that most of the information you refer to is available either in this site or in the OUCH library. There are also several books that are available, and the leader in the industry, Dr. Peter Goadsby is heading great research. In fact I'm still stuck on the fly connection, but until I get a biomedical degree, I'll probably stay stuck there. 
Cat
Edit: After reading your other post about the hallucinogens being the cause, you just proved what Bob's were saying...ugh I hate it when I'm that naive.
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| « Last Edit: Apr 22nd, 2003, 2:43pm by catlind » |
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Ueli
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Re: some thoughts of cluster headaches
« Reply #10 on: Apr 22nd, 2003, 2:13pm » |
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I find it great that someone without previous knowledge of cluster headaches finds after only 3 hours of studying our site the solution of all our problems.
That's a sure fire indication that all the information on CH is to be found here. People, take Osman as an example and start exploring the site.
I agree with jdownes: Osman, thanks for your observations. Thank you very much indeed for solving all our problems with a simple over the counter remedy, that - should your local wellness shop not have it in stock - can be ordered from hundreds of web sites.
Osman, you are such a ingenious problem solver, why do you waste your talents on such a small minority as clusterheads? Your vocation lies in solving larger problems, like finding a cure for AIDS, conquering hunger in the world, or even bring peace to all peoples on earth.
Bowing in awe,
Ueli
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brain_cramps
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Re: some thoughts of cluster headaches
« Reply #11 on: Apr 22nd, 2003, 3:54pm » |
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on Apr 22nd, 2003, 2:13pm, Ueli wrote:Osman, you are such a ingenious problem solver, why do you waste your talents on such a small minority as clusterheads? Your vocation lies in solving larger problems, like finding a cure for AIDS, conquering hunger in the world, or even bring peace to all peoples on earth.
Bowing in awe,
Ueli |
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awwww WTF? Why not start with something small like CH? kinda like a warm-up exercise before heading off to tackle AIDS.
Sufferers everywhere have been waiting for centuries for someone with your vast problem-solving abilities to come along and help us logically-challenged shlubs!
Keep us posted on your progress Ozzy,
grant
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| « Last Edit: Apr 22nd, 2003, 5:18pm by brain_cramps » |
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Charlie
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Re: some thoughts of cluster headaches
« Reply #12 on: Apr 23rd, 2003, 6:51am » |
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I have to thank you for expressing interest in our little part of the pain universe. However: I wouldn't trade cluster headaches for some of your problems. Sleeping more than half your life, isn't something to take lightly.
There is nothing mysterious about the mechanics of this horror. We know why it hurts and learn more and more all the time about it. Physical types don’t wash. If one looks at the images of the members, you'll find that we come in all shapes, sizes and ethnicity. Those that are poorly represented are pretty much the same as in the other areas on the internet. Some have greater access or come from societies that have different attitudes about sharing personal stuff, perhaps. It just isn't very exciting.
Uh.......the balding thing is a new one to me. It's pretty funny too. Sorry, but other than that most of us are men, it just doesn’t work. It’s not accurate to call this a "man's" disease, however.
You'll also find a pretty good mix of lifestyles here. Again, nothing exciting there either. Things like alcohol clearly affect CH but are not the cause of the syndrome. Some of us like me, didn't have trouble with it. How we wish we could pin down something as easy as diet or a definite list of things to avoid or do, but so far.....nada.
Thanks for the interest and relax....although reading and replying to posts here, is a good way to do so.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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