Author |
Topic: diagnosed/but how and when (Read 457 times) |
|
Yorky
CH.com Alumnus
New Board Hall of Famer
learn to meditate (or just sit & do nowt)
Gender: 
Posts: 1280
|
 |
diagnosed/but how and when
« on: Jul 22nd, 2006, 5:46am » |
 Quote  Modify
|
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.
|
|
 IP Logged |
today is a gift.....thats why it is called the
present.
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender: 
Posts: 5164
|
|
Re: diagnosed/but how and when
« Reply #1 on: Jul 22nd, 2006, 6:23am » |
Quote Modify
|
some have gone years with misdiagnoses and some of us (lucky ones  ) 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
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
BMoneeTheMoneeMan
CH.com Alumnus
New Board Hall of Famer
In remembrance of KingCazman. RIP
Posts: 2082
|
|
Re: diagnosed/but how and when
« Reply #2 on: Jul 22nd, 2006, 1:10pm » |
Quote Modify
|
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$
|
|
IP Logged |
"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
|
|
|
maffumatt
Guest
|
|
Re: diagnosed/but how and when
« Reply #3 on: Jul 22nd, 2006, 1:31pm » |
Quote Modify
 Remove
|
6 years before I had a name for it.
|
|
IP Logged |
|
|
|
Paul98
Guest
|
|
Re: diagnosed/but how and when
« Reply #4 on: Jul 22nd, 2006, 2:04pm » |
Quote Modify
Remove
|
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.
|
|
IP Logged |
|
|
|
BMoneeTheMoneeMan
CH.com Alumnus
New Board Hall of Famer
In remembrance of KingCazman. RIP
Posts: 2082
|
|
Re: diagnosed/but how and when
« Reply #5 on: Jul 22nd, 2006, 2:12pm » |
Quote Modify
|
on Jul 22nd, 2006, 2:04pm, 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$
|
|
IP Logged |
"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
|
|
|
Paul98
Guest
|
|
Re: diagnosed/but how and when
« Reply #6 on: Jul 22nd, 2006, 2:29pm » |
Quote Modify
Remove
|
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.
|
|
IP Logged |
|
|
|
TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
Gender:
Posts: 3201
|
|
Re: diagnosed/but how and when
« Reply #7 on: Jul 22nd, 2006, 3:51pm » |
Quote Modify
|
18 months for me.
I self diagnosed from this site. When I entered a full blown cycle, my doc diagnosed.
J
|
|
IP Logged |
How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
Gender:
Posts: 14968
|
|
Re: diagnosed/but how and when
« Reply #8 on: Jul 22nd, 2006, 10:51pm » |
Quote Modify
|
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 
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Paul98
Guest
|
|
Re: diagnosed/but how and when
« Reply #9 on: Jul 22nd, 2006, 10:57pm » |
Quote Modify
Remove
|
on Jul 22nd, 2006, 10:51pm, 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
Charlie |
|
OK Charlie-
You are lucky you got diagnosed so quick.....Now, what thcnique?.....Do I want to know? 
-p.
|
|
IP Logged |
|
|
|
Mastifflvr28
CH.com Alumnus
New Board Hall of Famer
Freddie's eyes
Gender:
Posts: 3458
|
|
Re: diagnosed/but how and when
« Reply #10 on: Jul 23rd, 2006, 12:59am » |
Quote Modify
|
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
|
|
IP Logged |
Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: diagnosed/but how and when
« Reply #11 on: Jul 23rd, 2006, 1:13am » |
Quote Modify
|
15 years
|
|
IP Logged |
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
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: diagnosed/but how and when
« Reply #12 on: Jul 23rd, 2006, 1:34am » |
Quote Modify
|
10 yrs of "allergies" 
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
FramCire
CH.com Alumnus
New Board Hall of Famer
Life like a froward child must be humored a little
Gender:
Posts: 847
|
|
Re: diagnosed/but how and when
« Reply #13 on: Jul 23rd, 2006, 2:02am » |
Quote Modify
|
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).
|
|
IP Logged |
You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender:
Posts: 4222
|
|
Re: diagnosed/but how and when
« Reply #14 on: Jul 23rd, 2006, 2:23am » |
Quote Modify
|
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
|
|
IP Logged |
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)
|
|
|
Yorky
CH.com Alumnus
New Board Hall of Famer
learn to meditate (or just sit & do nowt)
Gender:
Posts: 1280
|
|
Re: diagnosed/but how and when
« Reply #15 on: Jul 23rd, 2006, 2:52pm » |
Quote Modify
|
on Jul 23rd, 2006, 2:23am, 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?
|
|
IP Logged |
today is a gift.....thats why it is called the
present.
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: diagnosed/but how and when
« Reply #16 on: Jul 23rd, 2006, 5:27pm » |
Quote Modify
|
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.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: diagnosed/but how and when
« Reply #17 on: Jul 23rd, 2006, 5:32pm » |
Quote Modify
|
about 4 years of 'sinus headaCHes' before I went for Trepanation!
(I really did it to collect the sap.)
|
|
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
chewy
Guest
|
|
Re: diagnosed/but how and when
« Reply #18 on: Jul 23rd, 2006, 5:44pm » |
Quote Modify
Remove
|
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!
|
|
IP Logged |
|
|
|
lashultz
New Board Veteran
Gender:
Posts: 202
|
|
Re: diagnosed/but how and when
« Reply #19 on: Jul 23rd, 2006, 5:50pm » |
Quote Modify
|
six years.
Lee
|
|
IP Logged |
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender:
Posts: 4222
|
|
Re: diagnosed/but how and when
« Reply #20 on: Jul 23rd, 2006, 7:49pm » |
Quote Modify
|
on Jul 22nd, 2006, 2:29pm, 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
|
|
IP Logged |
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)
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
Gender:
Posts: 14968
|
|
Re: diagnosed/but how and when
« Reply #21 on: Jul 24th, 2006, 2:42am » |
Quote Modify
|
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
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
fmsam
New Board Junior
I love YaBB 1G - SP1!
Gender:
Posts: 78
|
|
Re: diagnosed/but how and when
« Reply #22 on: Jul 24th, 2006, 6:30am » |
Quote Modify
|
for 8 years my doc told me it was unilateral facial pain 
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
|
|
IP Logged |
oh yea but isn't it nice when it stops
|
|
|
rickyshot
New Board Hall of Famer
ouch
Gender:
Posts: 985
|
|
Re: diagnosed/but how and when
« Reply #23 on: Jul 24th, 2006, 9:39am » |
Quote Modify
|
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..........
|
|
IP Logged |
|
|
|
thomas
CH.com Alumnus
New Board Hall of Famer
"Hit like a phillips head into my brain."
Gender:
Posts: 3281
|
|
Re: diagnosed/but how and when
« Reply #24 on: Jul 24th, 2006, 9:51am » |
Quote Modify
|
3 years.
|
|
IP Logged |
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.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss