As a new member its time to tell  my CH story.
From I was about 16 years old, I noticed a pain in my head around my left eye, every day at 12:00 (noon)
Its was like a build-in timer, exactly the same time every day. The pain it self was strange, a bit strong and last about 15-30 min.
I could release the pain by pressing my finger on a nerve in my shoulder and neck.
OK, have to tell I am blind on my left eye, I passed some surgery when I was 5 y.o. as my eyes was not looking in same direction always :)
Some shit happen and some infection started, and after a while totally out of control, some years after it was just "dead"
Anyway, its not a big deal with only one working eye, but with all the eye trouble, all doctors had focus on my left eye for many years.
When I was about 28 I was 1 hrs. from a surgery where I was suppose to get rid of  left eye, as we all believed the pain came from there.
I have just read about CH somewhere and I recognized all the symptom, and explain it for the doctor with the knife ready in his hand.
He looked surprised on me and said, I think u are absolutely right, better we spare your eye now and let a Neurologist check you out.
And it was confirmed CH and O2 was working well, Yahoooooooooo, pain release now, after 12 years.
At that time it was periodic and perhaps 2-3 month a year, start same time about October every year.
Then some change and it was for some year in spring time, and then summer time and then totally unpredictable until now.
It is like the attach and pain are getting stronger and stronger as older I get, but I remember some really bad days without O2 when I was in the thirties.
Before I knew what it was and how to deal with it, I tried everything to release the pain, including shower where I changed the water from boiling hot to ice cold all the time, released the pain a bit, but feels like getting a heart attach when i change to cold lol.
Blocking blood flow to the head by pressing a bar or whatever in my neck was a release and could sometimes stop it.
If my GF pressed very hard on a certain place on shoulder could stop it as well or at least release the pain.
Have been scared like hell to fall asleep as it would trigger CH in about 1,5 hrs.
Have been walking more or lesser naked outside in -15 degree to get pain release.
Have been refused to boarder a flight with my small O2 "bomb" even airline and security was informed upfront.

I tried Imigran injection about 5 years ago, and it was like getting a new life.
I have tried to shoot my self trough my pants doing a meeting, and been able to continue without break.
Imigran have one side effect for me, I will get very heat sensitive for max 2 hrs but its minor problems comparing the CH it self.

My CH seems to be totally unpredictable now, and the last years I have had some long and very heavy attack.
Have been able to break my periods with Prednisolon in few days and CH free for 4 month now :)

Hello Klaus,
   That's quite a story.  I had a couple of teeth pulled before I was correctly diagnosed.  Good thing I wasn't having eye problems.
    Hope you get some relief soon.
 
                                         PFD's
                                         JPC

Hello, and welcome, Klaus.

I found a couple of things you mentioned interesting.  First, I found one article that mentions that removal of the eye on the cluster side had no effect on cluster headache in at least one patient:

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Second, you mention putting pressure by means of a "bar" pressed against your neck.  Almost invariably, I get a knot that forms during an attack at the top of my shoulder near the base of the neck.  I found that strong pressure against this point could sometimes reduce the acute pain.  Whether it decreased the blood flow, or whether the pressure simply served as a distraction that made it appear to reduce the pain, I do not know.

I, too, used a metal bar that I pulled down--hard--against the knot.  I found later that it was even more effective to push UP against a bar that was mounted to the wall.  Used to get some pretty fair bruises in that area.

Eventually, I gave up doing that altogether in favor of placing ice in a sopping wet cloth against the knot in my neck, and another against my forehead, eye, and temple.  Seemed to be somewhat more effective.

None of these bizarre activities really stopped an attack for me, however--they simply served to reduce the pain of the attack, temporarily.  The pain would quickly return when the pressure or ice was removed.

Again--welcome to CH.com.  

Best wishes,

George  

WOW! Your experience is far too familiar to many on the board. The years of misdiagnosis and lack of treatment, the joys of a rare disorder huh?

You haven't mentioned any preventative medications. That's a med you take when you are on cycle to reduce the number and intensity of your hits. I use 1200 mg of lithium, daily, while on cycle. Eliminates up to 80% of my hits. I use oxygen with oral cafergot, and the ever occasional imitrex jab for the break thrus.

Other popular preventative medications are verapamil and topomax. Definitley something to talk to your doc about, may help decrease the amount of trex you go through.

As to the prednisone. Some can abort a cycle with a short burst of prednisone. Hope it's worked for you and the beast stays away fro a bit! For me, prednisone stops the attacks, but as soon as I go off the prednisone, they come back with a vengeance!

So glad you found us, pull up a seat and stay a while!

Joe

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
====================

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Hjærtelig velkommen Klaus.

Thanx for sharing your story. It is familiar to most, the years of misdiagnosis.
Guess I am the lucky one out, as a very alert dr in '92 or '93 immediately recognized what I had and gave me an injectable. Within 10 minutes it subsided. Off course I had to do all the tests in the hospital after that, just to rule out any malignant stuff.

Hoping you'll be painfree soon, Pascal.

Hi Klaus & Welcome to Clusterville

 You've found the motherlode of CH info/caring/sharing . . . and the answers you will get here come from folks who truly know your pain.

 Read, read, read . . . ask any questions you might have.  .  . and if you just need to vent . . . that's ok too.  This board changed/saved my life.

 Be Safe,   PFDANs

    Richard