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michael
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Before diagnosis
« on: Jul 28th, 2007, 10:06am » |
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I went for 30 years with these headaches before finally finding out what they were. For years it was diagnosed as sinusitis. Doctors would laugh at me when I mentioned the clockwork nature. I had many x-rays, even a sinus washout. I had also been diagnosed as having arthritis of the facial bones!
During all of those years I never met anyone else with anything like this. I also never found a drug that would touch them.
Eventually I suppose I gave up and accepted them. They would come twice a year and last 6-8 weeks with a 2-4 hour headache once a day. They just became part of my life and I went to a quite room to suffer on my own if at home, or kept myself to myself as much as possible and toughed it out if at work. I knew of nothing else to do. No-one would understand if I tried to explain.
If I told anyone the standard answer would be - you should see a doctor with that.
I read on this site that many people have suffered years before being diagnosed. I am just wondering how you all dealt with it whilst not knowing what it was?
Mike
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| « Last Edit: Jul 29th, 2007, 1:32pm by michael » |
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ClusterChuck
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Re: Before diagnosis
« Reply #1 on: Jul 28th, 2007, 11:00am » |
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on Jul 28th, 2007, 10:06am, michael wrote:| I am just wondering how you all dealt with it whilst not knowing what it was? |
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We did just like you did Mike, we lived with it ...
BUT, it sure is nicer to deal with the beast, now that I know what it is, and several tricks to cope with it, and even knock the beast on his ass every now and then!!!
Remember your three greatest tools in dealing with it (in order of importance):
Attitude Attitude Attitude
And NEVER let the beast even THINK about winning!!!
Also, meet, in person, as many fellow clusterheads as possible!!! You will never regret it!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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DonnaH
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Re: Before diagnosis
« Reply #2 on: Jul 28th, 2007, 2:54pm » |
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I had cluster headaches for 28 years and never knew what they were. Luckily, when in a 6 week cycle (spring and fall), I only had 2 or maybe on a bad day.3. So many folks here suffer from many more per day than that.
How to deal? You just know that you have to sweat it out.
Clusterheads are a very strong people with high pain tolerances. I've never heard one complain about a broken arm, a tooth ache or anything else of that nature. We take those simple pains in our stride.
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Member of OUCH since mid-1999
Clusterheadaches for 28 years......PF since 1986
dmh114@hotmail.com
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ClusterChuck
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Re: Before diagnosis
« Reply #3 on: Jul 29th, 2007, 10:25pm » |
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on Jul 28th, 2007, 2:54pm, 1stdonna wrote:Clusterheads are a very strong people with high pain tolerances. I've never heard one complain about a broken arm, a tooth ache or anything else of that nature. We take those simple pains in our stride.
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WHAAAA!!!
I got this hangnail that is just about to drive me nuts ....
I gotta booboo ...
Whiner Chuck
(OK, Donna, you can smack me now .... )
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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DonnaH
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Re: Before diagnosis
« Reply #4 on: Jul 29th, 2007, 11:04pm » |
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Pull your drawers down......I only smack on the butt cheeks. No kidney or brain damage errr, as much brain damage.
I can't HEAR you.......
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Sean_C
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on Jul 28th, 2007, 10:06am, michael wrote:| They would come twice a year and last 6-8 weeks with a 2-4 hour headache once a day. They just became part of my life and I went to a quite room to suffer on my own if at home, or kept to myself as much as possible and toughed it out if at work. I knew of nothing else to do. No-one would understand if I tried to explain. |
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Hi Mike, sorry to hear about your head pain, however I have a question.
You say your cluster last for 2 to 4 hours. I assume as you said in your post your unmedicated, and that at work you try to just keep to yourself and go with the flow.
Cluster speaking Mike, this scenario is impossible to accomplish, in other words the pain is so extreme, your sanity would be in question with your co-workers, in fact they would call 911 because you would be an uncontrolable mess.
Do you have a nuerologist your seeing? Have you been to OUCH UK?
Cheers,
Sean...................................................
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michael
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Re: Before diagnosis
« Reply #6 on: Jul 30th, 2007, 7:21am » |
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Sean, yes I have a neurologist now (are you suggesting I don't have clusters???)
The dealing with pain you talk about is your experience, not mine. I very rarely had higher than a kip 8 before I had medication. Kip 10's have only arrived since I've tried to stop them. (Multiple hits a day have only started since taking medication also).
Mike
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| « Last Edit: Jul 30th, 2007, 7:32am by michael » |
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thomas
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Re: Before diagnosis
« Reply #7 on: Jul 30th, 2007, 4:24pm » |
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The only way I dealt with it BD (Before Diagnosis) was lots of coffee, cigarettes, extremely hot showers with the water hitting my head and neck while banging my head against the cold shower tile wall. I finally was ready to end it all and finally got a diagnosis in minutes at the student's medical facility at the university I was attending, then I was a guinea pig for years until I got a good neuro who knew what in the hell he was doing.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Jonny
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Re: Before diagnosis
« Reply #8 on: Jul 30th, 2007, 5:43pm » |
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on Jul 30th, 2007, 4:24pm, thomas wrote:| The only way I dealt with it BD (Before Diagnosis) |
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For me it was cocaine, shrooms, LSD, acid, mescaline and all sorts of fun drugs.....LOL 
I cant remember ever getting hit while I was high, ever!
It been 17 years since ive taken any of that crap.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Charlie
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Re: Before diagnosis
« Reply #9 on: Jul 30th, 2007, 7:24pm » |
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God you people are tough.
I'm not sure what would have happened to me if I hadn't been lucky enough to have had a neurologist that recognized this horror right away.
Whew...
Charile
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There is nothing more satisfying than being shot at without result---Winston Churchill
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sldrswyfe
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Re: Before diagnosis
« Reply #10 on: Jul 31st, 2007, 2:26am » |
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I suffered for six months before I went to an Ear, Nose and Throat Dr...I assumed I had the worst sinus infection in the history of mankind. He referred me to a neurologist. I had written my symptoms down on a piece of paper. After he read it, he asked, "Do you mind if I keep this?" Of course I said, "No"...(I full well knew the damned symptoms by heart).
Then he reached behind him, pulled down a big book, found the page, and slid the book across the desk to me...and I read about me to a T.
When I read of people suffering for 15, 25, now 30 years...it amazes me...and I always wonder what you thought was wrong...if you were frightened.
Im very glad that you have all come to find out finally and so long overdue what is really the problem...best wishes at hopefully finding a treatment that works.
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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rolo65
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My first neurologist (of several I have seen) diagnosed me with CH on my first appointment, it just took 2 years for me to go to one. I thought it was my bad TMJ causing it at first and just lived with it.
The pain level stayed the same after I got meds, but O2 has probably saved me.
They routinely hit K8 for 45 min while on 12 LPM O2. Without the O2 there Colt 45’s.
There are several holes in the bedroom wall in need of repair!
I do believe the pain meds my general practitioner gave me at the start made the frequency of the attacks go way up though!
I’ve always been chronic since the start. Only break I ever get is a prednisone taper and I hate that stuff.
PF to all,
Roland..
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michael
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Re: Before diagnosis
« Reply #12 on: Jul 31st, 2007, 5:37am » |
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on Jul 31st, 2007, 2:26am, sldrswyfe wrote:
Im very glad that you have all come to find out finally and so long overdue what is really the problem...best wishes at hopefully finding a treatment that works. |
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Unfortunately there are probably many, many people around who still don't know what they are suffering from as most doctors aren't aware.
Mike
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sldrswyfe
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Re: Before diagnosis
« Reply #13 on: Jul 31st, 2007, 10:15am » |
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Yes Mike, very sadly that is true. I can only pray that they are led to the right place.
I once figured it like this. Due to the rarity of our condition (I have read that consistently only 1-4% of the entire world is afflicted with this), that if I were at a stadium full of people, I could possibly be the only person there with CH's, with maybe one other, that doesn't even know this is what they have.
I continue to hope every single CH'r is led to find their diagnosis...and that is why we all have to speak up and get this out there. Best Wishes. 
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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MR_FLOOR
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Re: Before diagnosis
« Reply #14 on: Jul 31st, 2007, 10:38am » |
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I started when I was 14 and didn't get diagnosed til I was 30.Grin and bare it,I discovered on my own that cold helped allot and pressure in certain spots(different spots all the time) worked as well.I was tested from everything from a brain a tumor to back trouble.My mom didn't know what to do she just kept taking me to doctor after doctor none had a clue,that is til I went to Diamond Headache Clinic.Even though by then I already knew what they were they knew how to treat them.They saved my life.See I have been chronic since the beginning so they were non stop.
Dave
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George_J
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Re: Before diagnosis
« Reply #15 on: Jul 31st, 2007, 11:37am » |
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Hi Michael,
Well--I'll give you a complicated answer to a simple question.
I first started getting CH attacks at the age of 13, back in 1966. I'm 53 now. I've always been episodic, with cycles lasting 6 to 8 weeks, and have always been a lefty. I cycled twice a year for twenty years, then once a year for ten years. My last three cycles have been three years apart. The last one was in the spring of 2006. I've been PF since then.
They were pretty sporadic right at first, but they quickly settled into well-defined cycles. I was lucky enough to be first diagnosed by a perceptive family doctor at the age of 16. But the diagnosis was useless.
The drugs available for treatment back then were largely ineffective, at least for me. I was given caffergot, Sansert (at different times) and Periactin, not to mention a cocktail of synthetic painkillers and narcotics. Most did nothing at all. Some actively seemed to make things worse--increasing the number of attacks, and extending the length of the cycle.
Back in the mid-seventies, I made a decision to forgo treatment, and just deal with them. I've gotten pretty fair at it over the years.
I'm quite lucky in some respects. Nearly all my attacks occur at night during REM sleep (although I used to get hit during the day sometimes). I've never gotten more than one or two attacks in a 24 hour period during high cycle. So other than losing my sleep and losing my mind, it hasn't affected the rest of my life to a great extent. Most of the time, I just dragged my sorry a$$ through the next day. Most of the people I know well have never seen me take a hit.
I've gotten very reluctant to mess with them. I can get through them as they are, but if messing with them can make them worse (which it has in the past), then I think I'd be on a slippery slope.
So the decision I made not to medicate is a distinctly personal one, given my particular circumstances. If I got hit more often during the day, or if I got hit more often during a cycle, or if I were chronic, my decision might very well have been different.
I do take magnesium and calcium supplements in cycle and out of cycle, and dose myself with melatonin during a cycle. I intend to try oxygen as an abortive during the next go-around. They seem to be gradually getting farther and farther apart. I hope that trend continues, but if it does not, I may well reconsider.
Bottom line to all this rambling, I suppose, is that diagnosis is fine, but sometimes it doesn't make a bit of difference to what we decide to do. CH just is. It's part of what I am. And so far, I can live with it.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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