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(Message started by: Yorky on Jul 22nd, 2006, 5:46am)
Title: diagnosed/but how and when
Post by Yorky on Jul 22nd, 2006, 5:46am
just got me thinking, from start of first pains-to your diagnostic.how long before someone as said ....your a clusty! some of you have had for 30+years did they know it existed then.
also which doughnut called it a headache.
Title: Re: diagnosed/but how and when
Post by BarbaraD on Jul 22nd, 2006, 6:23am
some have gone years with misdiagnoses and some of us (lucky ones  :D ) were diagnosed early into them.

I was diagnosed within two months (actually two years, but the doc did some harmone treatment and they stopped two years before ????) I had been thru two months of hell when I got in a good teaching hospital that actually knew what they were. Then they had to convince me I didn't have a brain tumor.

I think it depends on the docs - you get one who knows something about headaches and you MIGHT get the proper diagnoses. Otherwise ---

Hugs BD
Title: Re: diagnosed/but how and when
Post by BMoneeTheMoneeMan on Jul 22nd, 2006, 1:10pm
I am a lucky bastard for sure.  I went for almost a year without going to a doc.  When I went to a doc on the very first visit (my PCP), he mentioned the word and I took it from there.  

It was about 1 or 2 days later I met you bastards    :-*

B$
Title: Re: diagnosed/but how and when
Post by maffumatt on Jul 22nd, 2006, 1:31pm
6 years before I had a name for it.
Title: Re: diagnosed/but how and when
Post by Paul98 on Jul 22nd, 2006, 2:04pm
8-10 years for me with no meds except asprin.  I always thought the asprine worked great because 20 min after taking it the H/A would go away.  Little did I know.  In addition to the clusters, I then had ulcers.  

I think our condition has been recognized for a long time but it is so rare it is not well known.  Think about our brothers and sisters 100-300-500 years ago who were branded insane or locked up because of it.   Hmmmm, How many "witches" were BB-Q in MA. because they might have suffered CH?  

-P.
Title: Re: diagnosed/but how and when
Post by BMoneeTheMoneeMan on Jul 22nd, 2006, 2:12pm

on 07/22/06 at 14:04:43, Paul98 wrote:
Think about our brothers and sisters 100-300-500 years ago who were branded insane or locked up because of it.   Hmmmm, How many "witches" were BB-Q in MA. because they might have suffered CH?  

-P.


Think of how many holes were drilled in people's heads to let the demons out.
At this point, that sounds good to me    :(
B$
Title: Re: diagnosed/but how and when
Post by Paul98 on Jul 22nd, 2006, 2:29pm
B$-

I had thought about that.  The skulls that have been found with trepining.  (I know I butchered that word) (holes cut in skulls); After "discovering" CH (or did it discover me), I thought it might to be to let the demons out from our CH ansestors.  

I wonder where the holes are in the skulls in relation to our pain????  Some skulls had several holes.  Were they on the same side?  I can't remember.

-P.
Title: Re: diagnosed/but how and when
Post by TxBasslady on Jul 22nd, 2006, 3:51pm
18 months for me.

I self diagnosed from this site.   When I entered a full blown cycle, my doc diagnosed.

J
Title: Re: diagnosed/but how and when
Post by Charlie on Jul 22nd, 2006, 10:51pm
I was.......lucky...... I guess. I was seeing a neurologist for my epilepsy and because he and I had a no BS relationship, was diagnosed in 7 days. Didn't even send me for tests....he rarely did. I loved that guy. It was the the doc from whom I learned the technique http://smiles.ru/coll/jorry/sad.gif?SSImageQuality=Full

Charlie
Title: Re: diagnosed/but how and when
Post by Paul98 on Jul 22nd, 2006, 10:57pm

on 07/22/06 at 22:51:54, Charlie wrote:
I was.......lucky...... I guess. I was seeing a neurologist for my epilepsy and because he and I had a no BS relationship, was diagnosed in 7 days. Didn't even send me for tests....he rarely did. I loved that guy. It was the the doc from whom I learned the technique http://smiles.ru/coll/jorry/sad.gif?SSImageQuality=Full

Charlie



OK Charlie-

You are lucky you got diagnosed so quick.....Now, what thcnique?.....Do I want to know? :o

-p.
Title: Re: diagnosed/but how and when
Post by Mastifflvr28 on Jul 23rd, 2006, 12:59am
I was super duper lucky...kinda.  My family doctor diagnosed me instantly at 16 years old (what nice easy cycles back then) but the only drug that he thought to give me back then was Fioricet with codeine.  So basically I puked with each headache cause of the drugs and AFTER the pain ended, the drugs knocked me out.  For about 10 years.  Then I found ch.com, then I really WAS lucky :)
Mast
Title: Re: diagnosed/but how and when
Post by Jonny on Jul 23rd, 2006, 1:13am
15 years
Title: Re: diagnosed/but how and when
Post by E-Double on Jul 23rd, 2006, 1:34am
10 yrs of "allergies" ::)
Title: Re: diagnosed/but how and when
Post by FramCire on Jul 23rd, 2006, 2:02am
It only took about 3 weeks to get a diagnosis from my PCP (which has been confirmed by multiple specialists since) and then a little over 15 months from then that a link from E-Double saved my sanity (for a while at least).
Title: Re: diagnosed/but how and when
Post by georgej on Jul 23rd, 2006, 2:23am
Three years to diagnosis.  1969.  And yes, they knew about it then.

Interesting point about CH'rs perhaps burned as witches and warlocks in times past, and being the "victims" of trepanning--I've often thought that small numbers of us have existed for a very long time.  I've often wondered what was made of them.

Long ago, perhaps, but they were still our brothers and sisters.  I'd like to look into it a little further.  Maybe being married to a historian alters my outlook a little.

Best,

George
Title: Re: diagnosed/but how and when
Post by Yorky on Jul 23rd, 2006, 2:52pm

on 07/23/06 at 02:23:16, georgej wrote:
Three years to diagnosis.  1969.  And yes, they knew about it then.

Interesting point about CH'rs perhaps burned as witches and warlocks in times past, and being the "victims" of trepanning--I've often thought that small numbers of us have existed for a very long time.  I've often wondered what was made of them.

Long ago, perhaps, but they were still our brothers and sisters.  I'd like to look into it a little further.  Maybe being married to a historian alters my outlook a little.

Best,

George

i suppose in ancient times you would have been happy to be burnt at the steak during an attack(but the chair,drowning the witch.......(this theory for all you non historians goes like this .....throw the witch in the river/if she floats shes a witch/if she did not then maybe she was not?.....ps do clustys float?
Title: Re: diagnosed/but how and when
Post by brewcrew on Jul 23rd, 2006, 5:27pm
Three years' worth of diagnosed "sinus headaches" before I took matters into my own hands and sought a neurologist. I was convinced I had MS or a brain tumor. He sent me for an MRI, ruled out both of my suspicions, and proceeded to ask me a battery of questions. Told me he thought it was cluster headaches, put me on Sansert and Lithium, and three days later I thought he had transformed into God himself.
Title: Re: diagnosed/but how and when
Post by vig on Jul 23rd, 2006, 5:32pm
about 4 years of 'sinus headaCHes' before I went for Trepanation!

(I really did it to collect the sap.)
Title: Re: diagnosed/but how and when
Post by chewy on Jul 23rd, 2006, 5:44pm
I spent 20+ years of bad wisdom teeth, sinus headaches, migraines, chiropractic misalignment, etc.

The Bayer aspirin company went into crises mode when they found out I had finally been correctly dianosed.


Quote:
about 4 years of 'sinus headaCHes' before I went for Trepanation!

(I really did it to collect the sap.)


ROFLMMFAO!
Title: Re: diagnosed/but how and when
Post by lashultz on Jul 23rd, 2006, 5:50pm
six years.



                               Lee
Title: Re: diagnosed/but how and when
Post by georgej on Jul 23rd, 2006, 7:49pm

on 07/22/06 at 14:29:12, Paul98 wrote:
I wonder where the holes are in the skulls in relation to our pain????  Some skulls had several holes.  Were they on the same side?  I can't remember.


I saw the same thing somewhere along the line.  As best I recall, there were some skulls with several holes that included evidence of healing afterward.  So some poor schmuck had holes bored in his head more than once.  With stone tools.  I doubt they used anesthetic, either.  Yeesh.

That's not counting the skulls with holes bored in through the foramen magnum, though.  That was for the purpose of dining on brains.  I seem to recall that some of the Peking skulls of Homo Erectus had been--err--altered in that fashion.

Best,

George
Title: Re: diagnosed/but how and when
Post by Charlie on Jul 24th, 2006, 2:42am

Quote:
You are lucky you got diagnosed so quick.....Now, what thcnique?.....Do I want to know?
 

Sorry. I'm just catching up. Here is the technique:

             Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
Title: Re: diagnosed/but how and when
Post by fmsam on Jul 24th, 2006, 6:30am
for 8 years my doc told me it was unilateral facial pain [smiley=huh.gif]

so I though, oh cheers mate you just called me face ache

tosser

anyway we pretty much worked it out from this site
how cool is that

Rick
Title: Re: diagnosed/but how and when
Post by rickyshot on Jul 24th, 2006, 9:39am
10 years. I had diagnosis of sinus infections, bad teeth including a wrong one pulled which is no small thing for me because I always have problems when work is done on my teeth. Excrutiating pain for days on that one with antibiotics for dry socket swelling and of course along with the hits which were still coming. I almost beat the kids senseless at that time. I was wild with pain :'(
They also gave me neuralgia, neck spasms. I went the gamut.
And I am also a migraineur so they though that too. You never knew when one ended and the other began.

I am lucky I am not in the funny farm. If I had been born in days of old they surely would have bore a hole in my head looking for demons. It hurts my heart thinking about those poor schmucks who went through this from misunderstanding along with those who suffered epilepsy mental illness, other neurological disorders sigh..........
Title: Re: diagnosed/but how and when
Post by thomas on Jul 24th, 2006, 9:51am
3 years.
Title: Re: diagnosed/but how and when
Post by chewy on Jul 24th, 2006, 9:56am

Quote:
anyway we pretty much worked it out from this site


Same here. Worked out what treatments were effective. They did not include acupuncture,  peppermint oils, yoga, meditation chiropracters, dentists, or rattling chicken bones.

I did have some success with bottled Peruvian Butterfly Farts though.
Title: Re: diagnosed/but how and when
Post by brewcrew on Jul 24th, 2006, 10:29am

on 07/24/06 at 09:56:45, chewy wrote:
I did have some success with bottled Peruvian Butterfly Farts though.

LMFAO!!!! You f'n @$$hole - You owe me a new keyboard. [smiley=spit.gif]
Title: Re: diagnosed/but how and when
Post by Yorky on Jul 24th, 2006, 2:46pm

on 07/24/06 at 02:42:47, Charlie wrote:
 

Sorry. I'm just catching up. Here is the technique:

             Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

does help, nice one for that!
Title: Re: diagnosed/but how and when
Post by sandie99 on Jul 24th, 2006, 3:09pm
First hits in fall 2001, in full action in fall 2002 and diagnosis in January 1, 2003.

PF days & nights to all,
Sanna
Title: Re: diagnosed/but how and when
Post by jon019 on Jul 24th, 2006, 3:50pm
3 years to diagnosis, and it was my DENTIST. He absolutely refused to extract the tooth or teeth that I was sure were the root of the problem. Prince of a man who researched my symptoms and told me about CH. I then told the Dr what I had and he had to reseach the treatment. Alas it was fiorinal (from wide awake in incredible pain to sleepy in the same pain) so then cafergot which made me puke (I chewed the damn things in desperation). Then inderal (no help) then, then then, then, then, ...for years. Then found the National Headache Foundation which saved my sanity (still think they get short shrift here). Got from them the verapamil and O2 idea which changed my life (showed the articles to my Dr.) Then I found ch.com and you wonderful folks...

Regards

Jon
Title: Re: diagnosed/but how and when
Post by Yorky on Jul 24th, 2006, 4:55pm
iv read all your replies...but?how long was it before you beleived him.....personally, not until i had met u lot...week and half now i think cheers and good luck to you all
Title: Re: diagnosed/but how and when
Post by georgej on Jul 24th, 2006, 7:33pm

on 07/24/06 at 06:30:55, fmsam wrote:
for 8 years my doc told me it was unilateral facial pain


My favorite diagnosis was "unilateral ischemic cephalgia".  Which basically means "he gets a headache on one side but I don't know what causes it".

Watch out for "ischemic".  When you see that, you know they're going to throw the medicine cabinet at you.

Best,

George
Title: Re: diagnosed/but how and when
Post by Yorky on Jul 25th, 2006, 2:49am

on 07/24/06 at 19:33:06, georgej wrote:
My favorite diagnosis was "unilateral ischemic cephalgia".  Which basically means "he gets a headache on one side but I don't know what causes it".

Watch out for "ischemic".  When you see that, you know they're going to throw the medicine cabinet at you.

Best,

my funnyist was....that my face was sinking/sagging
dont remember wat doc called it.....(titanic head?)ha,ha

George
Title: Re: diagnosed/but how and when
Post by Summerbabe on Jul 25th, 2006, 9:35am
:D Hi Yorky...In my opinion it all depends on your doctor, ya know if you are seeing a neuro. I sure hope you are. I can only speak for myself,  but for all this battle sucks no matter how it is looked at from geting diagnosed to failed treaments, all trial and error. As far as myself and a diagnose, I went through torture of Er trips then referred to a neuro , Love Him!!! HE just coudlnt believe it I was his case study instantly!!!  He hadnt seen a CHer in years , and last patient was a man , I am very much woman. So he was perplexed to say the least. but we tried prevents, abortives, you name it, cat scans, emg testing,  I am episodic. What are you? Anyway , we are here to help ya York! Sure hope you are seeing a neuro darlin!!! O2 , Immitrex shots, Verapamil, caffeine, redbull, all help me!!! We will help you get through this..All my best to you, Summer 8)
Title: Re: diagnosed/but how and when
Post by Summerbabe on Jul 25th, 2006, 9:42am
Oh and Yorky, when I was finally diagnosed  two months..., I YELLED at my doc "  :o What the hell a headache? its not a headache and havent you heard one damn thing I've said? ' He then asked me to sit down and relax, and explained it all to me.....but I was furious , thinking he was downsizing my pain in the lightest of terms. Thats why we have our own names for the demon, beast, bangers, The Devil, but I pray to god to help me and these lovely people here, Well dont know what I would do without em ;;D  [smiley=hug.gif] Summer 8)
Title: Re: diagnosed/but how and when
Post by Dixiedelight on Jul 25th, 2006, 10:39am
Yep I went for years with them, not knowing. I finally found a doctor that knew. He didn't know what to do, but he gave it a name.
Title: Re: diagnosed/but how and when
Post by Yorky on Jul 25th, 2006, 11:33am

on 07/25/06 at 09:35:58, Summerbabe wrote:
:D Hi Yorky...In my opinion it all depends on your doctor, ya know if you are seeing a neuro. I sure hope you are. I can only speak for myself,  but for all this battle sucks no matter how it is looked at from geting diagnosed to failed treaments, all trial and error. As far as myself and a diagnose, I went through torture of Er trips then referred to a neuro , Love Him!!! HE just coudlnt believe it I was his case study instantly!!!  He hadnt seen a CHer in years , and last patient was a man , I am very much woman. So he was perplexed to say the least. but we tried prevents, abortives, you name it, cat scans, emg testing,  I am episodic. What are you? Anyway , we are here to help ya York! Sure hope you are seeing a neuro darlin!!! O2 , Immitrex shots, Verapamil, caffeine, redbull, all help me!!! We will help you get through this..All my best to you, Summer 8)
seen nuero 2/3 years ago/got to wait another 2 months,ps doing a lot better with ulot about(
Title: brewcrew
Post by Yorky on Jul 25th, 2006, 11:36am
think im getting the hang of this cp lark.
Title: Re: diagnosed/but how and when
Post by Tim_w on Jul 25th, 2006, 10:05pm
8 years for me
went as far as having ALL my teeth taken out
guess what that was not it >:(
TimW Happy Pappy
Title: Re: diagnosed/but how and when
Post by ShariRae on Jul 26th, 2006, 12:30am
22 years here...that sucked!


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