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old bud

(Member)
From: Narrabri
4 total posts
Not currently suffering :D
Hello fellow sufferers my name is Pete 26‚ and ive been copping these nasty CHs for 7 years andI want to get to the grassroots of why we got them in the first place.I would like to get some feedback as to what you think may have been the contributing factors for your first CH. What was different at this time of your life were there any subtle or major changes?For me there was quite a few i)i started drinking grog heavily ii)started smoking ciggarettes heavily iii)reluctantly took illicit drugs iv)had acute depression/anxiety v)had nasal surgery vi)had lower back problems. Let me know and we can try to find some common links. I really want to work together to find the safest and smartest resolution.
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Frosty

(Member)
From: Rosanna
23 total posts
Not currently suffering :D
I started getting them when I was about 18 (now 39). Used to do the usual binge drink on a Friday or Saturday night with the occassional pint during the week. This would be about the time I started to drink out socially with mates in the pub. Didn't smoke or do drugs. I was and still am really active and exercise regularly.
The only other things I can think of are that my Dad was a heavy smoker - he stopped shortly after I was born‚ so my Mum would have copped passive smoking whilst being pregnant. I was also born 7 weeks premature - no complications from that though.
I would love to know the "Why".
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BUTCH

(Member)
From: woywoy
29 total posts
Not currently suffering :D
HEY ALL‚

IM INTO MY FOURTEENTH YEAR BEING CLUSTER AND OVER THIS TIME HAVE ASKED MYSELF ALL THE QUESTIONS I CAN THINK OF‚TRIED DIFFERENT MEDS‚DIETS‚STOPPED SMOKING AND DRINKING HERE AND THERE WHILST IVE NOTICED WHAT SEEMS TO TRIGGER THE HEADACHES MORE OFTEN THAN NOT THEY ALLWAYS GIVE ME A HAMMERING RGARDLESS‚ I WOULD LOVE TO GET TO THE BOTTOM OF IT ALL TO. LIKE FROSTY AND OLD BUD I WAS BORN SIX WEEKS PREMATURE WITH WHAT SEEMS TO BE THE ONLY SIDE AFFECT BIENG A LAZY LEFT EYE(THE CH SIDE)WITCH I HAD A OPPERATION ON AS A KID‚I HAVE A HISTORY OF LOWER BACK PROBLEMS‚ IVE ALSO MET TWO CH SUFFERERS IN PERSON AND FOUND IT ODD TO DISCOVER WE WERE ALL LEFT HANDED‚ ANY OTHER LEFTYS OUT THERE?

CHEERS..This post was edited on 05/08/2010 at 10:03 am
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Frosty

(Member)
From: Rosanna
23 total posts
Not currently suffering :D
...I'm a lefty too smile
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Sedz

(Member)
From: Parmelia
6 total posts
Not currently suffering :D
Me too smile

I actually did a mini survey on OUCH once - a lot of us were lefties and the other strange detail which came out of it was that a lot of us were also negative blood types.

I'm 0neg - a fair few of the others were like A-‚ B- (or whatever other negatives there are out there apart from O- icon)


Not sure whether that was just a coincidence from that bunch of people who gave their details‚ but it struck me as odd.

With cross testing being so fast these days I guess unless you've had an op or got a card at birth like I did‚ then some people wouldn't know their blood group?
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BUTCH

(Member)
From: woywoy
29 total posts
Not currently suffering :D
IM AB+‚BUT DONT KNOW MUCH ABOUT BLOOD.
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BUTCH

(Member)
From: woywoy
29 total posts
Not currently suffering :D
Was thinking‚ how many of us suffer sleeping disorders like sleep apnea or sleepwalking or something else to attribute that we would not consciously do? ‚ive had some wierd sleepwalking issues
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Toms headaches

(Member)
From: Northbridge
30 total posts
Not currently suffering :D
Tom is only seven. Therefore does not drink or smoke. Has not been exposed to smokers. He is left handed! He alsomhas a Palmer crease. Doe anyone else have one? I would love to know why he has started so young.
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Karmadog

(Member)
From: Canberra
13 total posts
Currently suffering :(
Jack is also seven. Born just over 6 weeks prem. Thought he might be a lefty early, but he has settled on his right hand. Has some fine motor issues but otherwise developed normally.
He did have night terrors when he was a toddler but grew out of them. His blood group is O+.
No smoking or drinking, though his father and I both do. Didn't smoke or drink when I was pregnant though.
Hope this helps with your survey.
Cheers
Al ;^)
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Roger

(Admin/Moderator)
From: Latrobe
259 total posts
Not currently suffering :D
I'm right handed, mine started at age 24. I didnt drink a lot or smoke, I wasnt born premature, but I had damaged my lower back at work 6 years earlier. I'm O+ blood group. Had no sleep disorders, exceopt that I slept really deeply.

Everyone has a palmers crease, do you mean a 'Single transverse palmar crease'?
http://en.wikipedia.org/wiki/Single_transverse_palmar_crease
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JAY-12CC3EAEE8

(Member)
From: CAMPBELLTOWN
5 total posts
Currently suffering :(
I wasn't born prem but I was a breech birth. I was in a fatal car smash 2 months before the CH began and was xrayed head to to lots of times to be told there were no visible causes for the pain I was 'claiming' to have. In 2006, decades later, it was discovered I have numerous, serious problems with my spine which are now also arthritic and irreversible. However, i suffered migraines for 2 years BEFORE that accident although I haven't had one since then. I began smoking at 14, drinking and smoking dope at 16 to try and releive the CH. I quit all these a few years back hoping to 'cure' CH but they were more painful over the next 2 years. I am smoking again but no more AOD for me. the boozer really does trigger them for me and i don't need drugs either. having a cig during an attack, actually helps to calm me down and breathe through the pain. Having lots of coffee during the day is something I began doing 6 years ago after not having coffee at all since age 16. Now, outside of CH time, i have 1 cup per day. Any more than 1 cup and I get tremors and jitters BUT, while I've got clusters - I can and do drink up to 12 cups every day (including right before bed) and I get no jitters or tremours at all!! I'm keen to figure out why but right now I'm just grateful coz the coffee overdose is keeping the clusters at bay during daylight hours. I used to get em morning noon and night, up to 9 a day and now I only get em at night (up to 5), so I can keep my tabs for the worst night time one and actually get an hours sleep at a time instead of the previous 20 mins at a time.This post was edited on 25/08/2010 at 1:03 pm
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Roger

(Admin/Moderator)
From: Latrobe
259 total posts
Not currently suffering :D
Hi,
Coffee affects different people different ways. in some people, it stimulates the sleep centre of the brain, therby helping people to sleep. With you, it could be stimulating the area of your brain that deals with being calm and relaxed. It can also change in a person, meaning that where once coffee kept you awake, it can suddenly change and help you to sleep.
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Homesong

(Member)
From: EASTLAKES
2 total posts
Not currently suffering :D
Coffee works for me while in an attack. A hot long shower on onset I have found does wonders in reducing the duration of the headache (as hot as you can stand helps as I swig down the aspro clear in the shower). Then back to bed with the best painkillers I can find and a cold face washer (knowing that I'll be back in the shower in another couple hours). Only ever got them at night but had two today during the day.??? I too had spine issues as an adolescent and my first lower back operation at 19 and two other ops last year at age 36.

This is my first cluster in two and a half years and it hits just after I went back to work after four weeks off with a bulging disc in my neck. I've been taking loads of drugs to sort out this problem and find it interesting that clusters appear as I wean off opiates.

I love a drink but uncannily have been off wine for about 6 months. Smoked socially in my 20's but not now. I do associate clusters with stress and neck tension .... I feel them lurking for up to a fortnight before they hit - if only there was a treatment that I could get into me while I feel this lurking?

I'm B+ blood group and female. When I was diagnosed my neurologist said that the ancients used to associated these headaches with men who had 'lionoid' faces ... I took that to mean like a really strong facial structure (like a lion's). I guess I do have a strong face - high forehead and broad nose. He also said that they are hereditary (and if they are they are deeply back in my tree - but mum does get migraines).

Anyway - if anyone out there has any new tricks for me please let me know. I'm out of sick leave at work and fear sleep at the moment.

Ta
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old bud

(Member)
From: Narrabri
4 total posts
Not currently suffering :D
gday old bud here. Just a thought. I get clusters on the left side. I started to get them around the same time i got my first mobile phone. I always have the phone to my left ear. Is this just coincidence?
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi old bud
I would call it a coincidence--my headaches on the left, hold the phone to the right and left, no consistency or pattern.
Great to see you call in!
Cheers
Heather
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Barry T Coles

(Member)
From: Karratha
217 total posts
Not currently suffering :D
Its a strange beast we deal with, over the time I have been dealing with it I like I guess a lot of you have searched for answers & the things I list below are not answers as such but thing that relate to what has been talked about above, apart from this site I am a member of OUCH UK & the US based clusterheadaches.com & this is where most of this info comes from other than research of medical paper over the years.

Trauma: there has been some evidence that people who have had trauma through a car accident get clusters but it’s not confirmed as a main instigator of CH I haven’t had a car accident or been put in the position of trauma in any way other than falling of my tredly when I was a kid.
Back pain: I have never come across lower back pain as an alignment to CH but who knows with this beast.

Age & smoking drinking: I never got CH until I was just about to turn 50 & had drunk & smoked since I was about 16, smoking is a vasco restrictor in that it will assist in helping the blood vessels from swelling which is the cause of the pain we get, for those who are new to this lovely little dance we do, swelling of the blood vessels in the effected side is what creates the pain we get & the vessels can swell to around 20 times their normal size, the big question is why this happens & that’s where science is at a stand still, it’s believed in neurological circles that the hypothalamus malfunctions but as to why it malfunctions the jury is still out, it should also be noted that people who have never smoked or drunk get the same affliction.
It’s known that the hypothalamus is the control centre for most of the body’s organ functions, it’s worth googling for hypothalamus & disorders you will find an absolute myriad of ailments related to the hypothalamus.
Age is another thing, it is considered in medical circles that you get CH early in life & grow out of it, if thats the case then I am going to have to hang around until I;m about 100,don't really fancy that.

Sleeping disorders: these can be attributed to the hypothalamus; it controls the penal gland that in turn makes the natural chemical melatonin, which is the body’s natural sleeping tablet,
Left handed right handed or ambidextrous as far as I have ever read there isn’t any correlation to which side you will get hit on & indeed some people report that they switch from side to side during a cluster period, may have been left side last cycle & right this time, not the norm but does happen.
Hot verses cold: now this is one that throws the cat in among the pigeons, why is it that people with the same condition react differently to heat or cold, for me cold packs can kill a small hit in a few minutes if got onto quickly where as heat will crucify me & other people as has been said before can take a really hot shower & then lay down with a cool flannel.
Telephones: as a relatively new invention I personally wouldn’t expect that they would make a difference as people have been recorded in history as having CH way before phones came about, I’m not saying they don’t help attribute to the condition but I think we cane rule them out as a cause.
There have been other things discussed that will help or lessen the effects one that has been talked about a lot is changes in latitude creates changes in attitude, I actually experience this about 5 years ago when we visited our granddaughter in Melbourne, we live north of the 26 parallel & the 2 weeks we spent in Melbourne where absolutely PF not even a shadow but they returned as soon as I got back home.
I know I haven’t given so much as an answer here but I hope it gives some insight into what has been discussed on other forums & encourages every one to search further & become very aware of your condition & here I will quote from a long time sufferer "an educated Ch'er hurts less" & I can assure you he is right.

Cheers & some PF times
BarryThis post was edited on 25/02/2011 at 11:21 pm
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wayne mc

(Member)
From: marulan
71 total posts
Not currently suffering :D
Great post Barry,
from my experience spot on

regards
Wayne
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
No trauma in my life, but I contracted encephalitis as a toddler.
I was a drinker and smoker (fags from age 11), now a non-smoker, and I couldn't believe the difference stopping smoking made to my CH. Much less intense and shorter in duration. I came up with my own method for stopping smoking, if anyone's interested i can write it out for you.
When I was chronic, I also discovered that if I drink fast and heavy for half an hour (then normally) then an attack wouldn't happen, and for whatever reason, the next day I would NEVER get an attack. As this involved me drinking a litre bottle of vodka every three days, you can understand I do NOT recommend trying it yourself. At the time, I would have shot myself if I'd of had a gun, so I wasn't bothered by the drinking.

I've been green for ages, only just recently become red. In my flat I have one of those inversion table things that you swing upside down on. During an attack last week, I thought "what the hey" and jumped on. Breathing in through nose and out the mouth, swallowing copious snot, I went pain neutral in 5 minutes and the attack was over after 10 mins. I'd already taken Imigran, so I couldn't say which was what. I've since "had a swing" 8 times, 6 times without medication. Mixed results, twice I couldn't stay upide down long enough, but the other times the attack was aborted. One of those attacks was from sleep and was a strong 7, really nasty. That was killed in 10 minutes. Really noticeable too, is how much snot is produced (sorry for the graphic description), and how much easier it is to clear the sinuses, and therefore breathe more cleanly when upside down.
Is something really happening? I don't know, but it seems to be working for me so i'll keep doing it. Not so easy to lug the apparatus around though, so I can't see it catching on, but if you're ever in the position to try it, give it a go.

Cheers Peter.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
You really are one weird dude Peter; but one that shows what we will do "help" ourselves!
I am trying to work out the mechanics of it all and that in itself is giving me a headache--joking of course. Upside down--blood rush to the brain--oxygen. ..... Anyway it worked. But please don't hang off hotel top story balconies!
The only "odd" thing in my background is neurosurgery in the general area of the hypothalamus which the neuro said "probably not connected", but who really knows. Had a condition called Arnold Chiari Malformation that a chiropractor stirred up during a treatment. Had to have it "decompressed" which was pretty radical in my mind (or my head) anyway. (sued the chiropractor and won).
Barry's post opens up so many questions--
I wonder when do most people's first attacks start
Do they even know
They would not even probably recognise them as CHs (in my case I didnt)
There seems to be so many variations of CH ie my type starting later in life --fortunately for me reaching retiring age, rather than for men or younger women with families to support etc.
Back on the subject:
Trauma--had one hell of a fall of horse--head first into an arena, refused medical treatment, but know was the start of neck problems very high up C1 and C2 with instability
Drinking and smoking--pretty well a social player, but given up completely. Try an occasional glass of white, but just cringe at the thought of what might happen
Hot v cold--a definite no to heat during an attack. I fight a bit with cold packs, have to have just at the right time. A general comment here, I have a very low core temperature, always cold, very rarely above 36degrees, a raised temperature for me is 37.
But I live for my hot water bottle at other times. It is a constant companion during winter.
Barry you are so right about being educated about CHs
Thanks for your infor
Heather
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
LOL Hi Heather. I'm not as weird as all that, honest. The swing table thing was quite popular in the middle '80's and I tried one then, but i's only because my buddy was moving to a smaller house he dumped it at my place.
Not wishing to be gross but it has to be asked- WHY do our noses run so much during an attack? Runny nose is normally the result of an infection or invasion. CH is neither, so what causes the snot?
When I started getting CH, nobody could tell me what it was, and to make matters worse I had to try and explain things in Russian. It wasn't until I stumbled into an untried clinic with my head exploding that I was told what it was; Funnily enough, by an Australian doctor named Bruce. Swear to God. The only Aussie Bruce i've ever met. But it wasn't until three years after that, when I found this site, that I heard of Sumatriptan. Three Neurologists and one GP didn't tell me about it.
Apart from that, I figure if the boffins don't really know what's going on, it's up to us to explore EVERYTHING and isolate what works. Like the getting slaughtered on alcohol thing. Why do I NEVER, and I do mean never, get an attack the next day? There must be a reason and if that reason can be isolated we're on a winner. For the sake of my liver I don't indulge as before but the fact remains- hangovers and CH are mutually exclusive. Well, for me anyway.
I'm also a cold person, Heather. A hot room can trigger me, especially if it's artificially heated,but I always have put that down to air quality. As before, who knows? I don't know about hurting less, but if we keep educating ourselves we're generating Hope, and that can't be a bad thing.
First day of Spring here, also not a bad thing.

Cheers to all,
Peter.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Swelling of blood vessels, excess fluid--maybe equals more mucous?????
Go ask Bruce??
Any non Aussies would wonder what every, or whoever we are talking about!
Have just bought Monty Python and the Holy Grail for my daughter and Son in Law; think I might go and get them some of the older real Orstralian stuff as well.
They are well aware who Bruce is!
And we have just drifted into Autumn.
As you are probably well aware, weather here has been pretty wild and woolly, and Christchurch in NZ has been rocked literally to its soul.
South Australia has been extremely lucky--this time.
I remain in remission, but about to another neurologist in Melbourne just to have a chat!
Cheers
Heather
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Ben

(Member)
From:
327 total posts
Currently suffering :(
I found a good document or summary of CH, what it is, why it occurs and recent lists of available/known treatments. As written by the world's best and brightest. Usually found inside expensive and inaccessible medical journals, this one is an excerpt from a seminar on Neurology.

Here is a link to a download portal where you can get your hands on some of these elusive clinical trial outcomes. The following is an example of accurate and often costly medical literature that is regularly withheld from the public domain and thus CH patients.

Link into this file sharing site where you can download the PDF (using the blue "Download now" button with the arrow pointing downward) before viewing it on your own copy of Adobe PDF reader.

http://www.4shared.com/document/DD4g3HDz/Cluster_HeadacheSemin_Neur
ol_2.htm


Another link to a download of a Handbook of Neurology, 700+ pages comprehensively outlining headache:

http://www.4shared.com/get/aL93h7CQ/Handbook_of_Clinical_Neurology.
html
This post was edited on 11/03/2011 at 6:56 am
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Ben
Have read the first one Ben--very interesting! Certainly "one for the books"
On my way out now, will leave the other one for later me thinks.
Great to have some one doing the hard yards with the research.
I am seeing another neuro in Melbourne for a second opinion just out of interest; appointment made when I was -- in the red so to speak -- but kept appointment. Glad to have this document under my belt!
Cheers and thanks
Heather
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Ben

(Member)
From:
327 total posts
Currently suffering :(
Heather,

Wait until you see the second one - It will blow you away.
Everybody likes to speculate about what CH is.
Here is 800 pages of what it isn't - so if we all get reading on this document whilst it is still available, we shall all be a lot wiser.

http://www.4shared.com/get/aL93h7CQ/Handbook_of_Clinical_Neurology.
html


It also includes what we do know about CH to date and comprehensively answers most of the questions posed on the site. It appears to be the latest, most definitive and comprehensive paper on headache published to date.

Not exactly light reading, but if anyone can make it through this material, your questions will be answered. Get your hands on it before it disappears!

I have access to many more like it that have since evaporated from their original sources.
If anyone would like access to this body of reference material, I can be contacted via PM and I would gladly pass on any documents through Email.

Cheers, Ben.
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Thanks very much for these links, Ben. Much appreciated.
cheers peter.
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Ben

(Member)
From:
327 total posts
Currently suffering :(
No worries Peter.

The ONLY advantage of losing my ability to work because of CH, is that I have time on my hands that others do not. So between attacks I can research for longer periods of time and sift through all the repetitious, duplicitous garbage in order to find the good stuff. I then try to get as many people onto the good research as I can, education always helps. Feedback from others tells me this is a useful tool. Someone on here said - "an educated CH patient is a good patient"? Or similar words to that effect.
Maybe it was my specialist, I don’t know…

I wish I was gainfully employed, but my CH got so bad I have not been able to work since 2004. Sympathy or "room to move" from employers just became too much to ask in the end. I had some very understanding employers, really good compassionate people. But at the end of the day they are there to make money not friends. They did not want to have people curled up under desks in conditions that pose a danger to themselves or others. Walking around a high-end electronics manufacturing facility post CH is good for no one.

I was working as a satellite microwave communications technician. I was good at what I did - a specialist in my field, with pride in my work. I worked on very expensive, intricate, microscopic high-end electronics. Some individual components I had to solder in were (FET) transistors made of gold, worth over $6000 each. Very small, sensitive and expensive. The margin for error was non-existent. I was soldering these things into units worth (US) a quarter of a million dollars each, all day during the 2003 Iraq war. So stuff-ups were not permitted, or people may have gotten killed as a result.

Can you imagine the pressure to get that right with tolerances down to the hundredth of a millimetre under blurry 50 times magnification, just after a cluster attack? It became virtually impossible due to the frequency of my CH. I hid my condition well and got away with it for a couple of years. Thanks only to 2 Methysergide (Deseril) swallowed on the way in the door at work and 12 Capadex a day whilst there. But I was guaranteed a force 10 attack exactly 8 hours later when the Deseril wore off. If I was ever asked to do overtime, it was a disaster...
Every day after work I collapsed into bed with a major rebound attack, by the time I had recovered it was time to go to work again. This was unsustainable.

6 Deseril a day for 4 years non stop ground my body to a halt. Liver tests were getting real bad, as Deseril is supposed to be used only episodically - 3 months on, 3 months off. Understanding of my condition was evaporating with my employer(s). I only managed to pull about 6 x 38 hour weeks in the last 18 months. Statistically not very reliable at all. I am surprised my work put up with me as long as they did.
They were as good about it as anyone could have expected them to be. But in the end, I conceded defeat and reluctantly gave up the best job I ever had in Feb 2004.
And with it, any future hopes for financial independence, freedom and security, like ever owning a house or a reasonable car etc.

It took 3 and a half years of not wanting to be pensioned off, before I finally won the battle to have my Cluster Headache recognised as a Disability in its own right. Then I was finally pensioned off in late 2007.
After 50 odd drug trials, I got sick of CH all the time. Talking about it, hearing about it, thinking about it, experiencing it, living with the threat of it - everything to do with it.
I wanted to crawl away and die.

But when I found this site and read some of the stories on here, I was horrified at what people were enduring in their own lives, mainly due to one thing - ignorance. I began to realise that my collective experiences were of some merit to other people. This is when I decided (with encouragement from my specialist) to crawl out of my darkened room and make the effort to try and help others on this site.

I don't know any more about CH than anyone else on here. But I do know how to navigate the ever changing and highly political rocky waters of the Australian health and welfare systems. I am here to help someone get access to the drug they never knew existed. Access to treatments they were told are unavailable. Access to specialist care they have been denied. Access to disability services and a safety net income through welfare agencies.
Advocacy is what I am about.

I have a stack of paperwork 3 feet high that documents my personal journey and disintegration from gainful employment, navigating through many welfare and disability agencies, through medical and personal assistance schemes, rehabilitation schemes, all the way to getting CH formally recognised as a form of disability. I don't know why I kept it, it is a sad indictment of Australia's health/welfare system and my battles with it. But the experience gained from this documented journey has to be worth something to someone else out there.
Being alone with CH sucks, I did that for 20 years. I feel compelled to help those who are suffering alone in their little flats, banging their heads against the wall, either figuratively or literally. Losing their jobs, trying to have others around them believe what they say and help them.

If I was well enough I would be an advocate for CH. I would consult with other patients and write on the subject. Do things like have "Cluster awareness week" show up on TV and in the media. Just thrash the CH story over and over publicly, until the average person in the street may have some understanding of what it is that we live through every day. I would push it as hard as other diseases are pushed in the media. But this is a pipe dream for me. If I was well enough to advocate CH, I would be employed once again.

I think a lot of CH patients have episodes where CH is the worst thing in the world to have ever happened to them. The headaches stop and the path of least resistance is to shut up and go back to work. I don't blame them, I would too. Society encourages silence and participation in the workforce. I still have daily troubles with having the term "Headache" effectively convey the severity of my condition to the rest of the world. It is a disability.

Little blue signs with pictures of wheelchairs on them do not help society to recognise CH as a disability. We need a sign for public toilets that has a symbol signifying an axe jammed into someone's forehead before we will get any public recognition.

Due to their solitary nature, I use disabled toilets to inject Imigran then recover from attacks, generally hang off the rails, dispose of my sharps, rinse my face off in the sink, then venture forth once the attack has been aborted. You should see the looks and comments I get from members of the public when I "walk" out of a disabled toilet. They expect to see a wheelchair, or a permit, or some more visible form of disability.

I apologise for the rant. My recent research into disability forums in the last few days has been disheartening. Everything there seems to ignore disabilities that are not immediately and visually apparent to the naked eye. The public perception still unfortunately revolves around the image of a person in a wheelchair. I have nothing bad to say about the “wheelies”, in fact – they are the ones who understand why I am forced to use a disabled toilet to abort an attack. They get marginalised too and generally do not make assumptions or sweeping generalisations about the appearances of disabled people. As I leave a disabled toilet with my bleary eyes, looking pasty, sweaty and grey, I have never once been glared at by someone waiting in a wheelchair.

So, this is why I spend my time researching and writing these expansive posts, in the hope that I can do my bit to raise awareness. It could be you who needs to hide out in a disabled toilet one day.

I know this thread is called "Why do you get them?"

But I ask the broader question of society: "Why DON’T you "get" them?"

I hope we can all get some recognition for CH in the wider world.
It would help a lot of “normal” people to understand.

Roger has made an immense contribution to the cause in creating this platform for us.
I commend his efforts in building this site, whilst being a CH patient at the same time.
Put your hands together for Roger people!

Sorry to everyone for the lengthy novels I write…

Thanks for reading.

Cheers, Ben.This post was edited on 14/03/2011 at 11:29 am
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Hi Ben,
I think you're entirely justified your rant. Your point about no visible problem therefore no disability in particular, as i'm sure most of us have experienced that at some time or another. Pipe dream or not, your knowledge and experience would make you an ideal representative for a CH awareness group, should such a thing ever develop.

Keep doing what you're doing, because in exposing us to your knowledge, you're enabling us to expose that knowledge to those we know, and slowly but surely CH will come to be understood by the general public.

cheers peter.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Ben
and Peter and all
Have been quiet for awhile. In Melbourne still, returning to Adelaide tomorrow. Have downloaded second file, but not read as yet--but will.
Saw neuro--nothing new to add.
Re your latest posting Ben--I agree with Peter with all he says (except I do not consider what you said to be a rant). I would like to think that I had the energy and the courage to stand up and say lets fight together! I just need to create that possibility.
Heather
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pedro

(Member)
From:
1 total posts
Currently suffering :(
hi, just joined this. nice to hear that im not the only one. mine started when i was 17. didn't start drinking till i was 18. no drugs or cigs. no major back issues although i do have bad posture!. right handed. dont know the blood type. i always keep a red bull on hand and neck it at the very first sign of things going bad. helps heaps. also obviously dont go anywhere near alchohol during a cluster. cant tell you all how good it is in a weird way to know that there are other people the same and trying figure this thing out with me. cheers pedro
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Pedro and welcome
Yes it is nice to know there are others out there just like yourself trying to get their head around what is going on inside their own head!
It is indeed a perplexing problem.
There is some great info provided on the left for you to peruse, plus some great info provided by one of our members "Ben" who is in this forum.
Re the alcohol, a definite no no during attack, I am now in remission and still very nervy of drinking, but having an wine or lite beer sort of with my heart in my mouth but coping OK. Certainly has reduced my wine consumption and yep I am the designated driver when we go out!
Cheers
Heather
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XxLovePeaceXx

(Member)
From: Tweed Heads
33 total posts
Not currently suffering :D
really like this quote from saintpeter... "if we keep educating ourselves we're generating Hope, and that can't be a bad thing. "

- but on topic mine started at 22 i think
- left handed, clusters only ever on RHS
- smoked/drank up mostly in my late teens, not anymore
- my dad smoked when mum was preg
- hurt my back at work when i was 21
- A+ blood type

I have been very curious about this too - is there just one thing that links us all.... not likely it seems
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi
Have you read Ben's big document about headaches?
Heather
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Ben

(Member)
From:
327 total posts
Currently suffering :(
Hey Heather!
What big document would that be? I am perplexed!
Ben.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
your one that classifies the headaches, the one that I would have liked to have linked to!
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