Please don't be angry with me..or us, but we really have a hard time reading and appreciating what you are trying to say with no paragraphs.   I got through the 1st line and my eyes started to wander and I couldn't read it. 
To save you from the almost certain  response you will get...I would like to break this down so folks can answer your questions




Bonjour
Today at 2:40pm     Male, aged 63.  I have had these headaches, from time-to-time (presumably the correct term is 'episodically'), throughout most of my adult life.
  My earliest memories are intense left-side headaches that seemed to be 'triggered' by cigarette smoke.  I have never smoked, but in those days it was impossible to avoid cigarette smoke in the workplace.  Whenever I visited smokey pubs, I invariably got a bad headache.


As I grew older, the headaches gradually became increasingly intense.  Sometimes they seemed to be triggered by stress, or the sudden relaxation from stress during weekends.  They usually lasted on or two days, but sometimes really bad ones lasted three days.
Afterwards my head felt numb, or bruised. 

I have never got any relief from analgesics such as aspirin, paracetamol or ibuprofen, however codeine sometimes takes the edge off the piercing sharpness of the pain.  The throbbing pain is like having a tooth abscess in my nose, eye or temple.  Sometimes the pain would move from high up at the back of the roof of my mouth, to behind or above my eye, or then move to my temple.

My GP only took me seriously (ie referred me to an ENT consultant) when I told him that the pain was so bad that I felt if I had a gun I would shoot myself.

For many years I was told by various 'experts' that I suffered from sinus headaches (I have suffered from sinusitis frequently throught my adult life), or migraine.  I'm afraid I have persuaded various dentists to extract too many teeth, in an attempt to end the pain.  One 'expert' at a London teaching hospital actually tried to persuade me that I was imagining my headaches!  Consequently, I have sometimes questioned my sanity, when suffering particularly bad bouts.

Eventually, an 'expert' suggested that my headaches were caused by damage to a facial nerve, sustained during one of the 3 sinus operations that I had when I lived in the UK. I was prescribed 2400mg of Gabapentin daily, which I have found extremely helpful.  However, there is an unpleasant side-effect that I dislike.  I moved to France a few years ago.

Towards the end of last year I had sinusitis again.  Whilst the infection was treated successfully with antibiotics, the intensity of headache and facial pain increased and became constant.  First I was referred to an ENT specialist, as the pain seemed to originate from high up in my nose, under my eye and I constantly have left-side nasal congestion, which becomes much worse when I lie down.  I wake at the same time each night, at about 03h30, with pain.  The intensity of the pain varies and has done so since it became constant.  Some days the pain is a lot worse than others.

I was subsequently referred to a neurologist who immediately diagnosed chronic 'algie vasculaire de la face', or chronic cluster headache.  She is the first 'expert' whom I've met who actually seems to understand this living hell.  At last, I have found someone who recognises my sypmtoms and who seems willing to help me find some relief from this constant pain that is destroying my life. 

I am currently waiting for an appointment to see a cardiologist, who will decide whether I am allowed to take Verapamil, together with the Gabapentin and also inject myself with Imiject, when the pain becomes particularly intense.  I read that misdiagnosis is common with this disease and many GPs don't know much about it.  Does any of this sound familiar to you?   

I mean only the best intent with breaking down your post Sir.  It is so much easier to read this way and these people here are the most caring people I've ever met for the most part and we will try to help you in any way we can.  It's just that we can help you a lot better if we can read it better, mon ami   

Linda_Howell wrote on Sep 3^rd, 2009 at 7:29pm:

Thanks Linda, you done good young lady.
Cheers
Barry

Headache. 2000 Oct;40(9):730-5.
 
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.

Klapper JA, Klapper A, Voss T.

Colorado Neurology and Headache Center, Denver 80218, USA.

OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.

PMID: 11091291 
_________________________________________________________________________
Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.

Bahra A, Goadsby PJ.

Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk

OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14763953 [PubMed]
=========================

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--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]
=============
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
(Thanks to "cluster" for link.)

Re. Memory:

Curr Pain Headache Rep. 2005 Apr;9(2):109-12.   
Cognitive processing in cluster headache.

Evers S.

Department of Neurology, University of Munster, Albert-Schweitzer-Str. 33, 48129 Munster, Germany. everss@uni-muenster.de.

[Edited for length.] In neuropsychologic evaluations, a reversible decline of memory processing was detected during the cluster attack, but not between two attacks. Long-term observation revealed no progressive cognitive decline in cluster headache patients over the years. With regard to personality changes, a liability susceptibility to anxiety disorders and to hypochondriasis, but not to mood changes, has been described inconsistently. All changes in alterations of cognitive processing in cluster headache are demonstrated to be mild and do not relevantly contribute to the clinical picture of this disease.

Publication Types:
Review

PMID: 15745620 [PubMed]

{BJ added: PMID 10971660 & 1563942 add supporting data from brief clinical testing studies. Too limited to be definitive.}

While you wait for the oxygen and Imitrex go and get some energy drinks (Red Bull, Monster, Rhino, ...) and put them in the fridge.
As soon as you feel a hit coming slam one (or two) down as fast as possible.
If you are lucky (quite a few of us are) this will either stop the hit or at least take the edge off of it.

Oliver
(who visited Corrèze 4 weeks ago)

It tastes horrible but it really ist THAT bad.

I alwaýs enjoy France!

Your understanding of "shadows" is on target; a term coined here some time ago. Often resolved with the standard OTC meds but not responsive to the usual abortives.

Did find this abstract on MS....

J Headache Pain. 2007 Sep 24;
Cluster headache attacks and multiple sclerosis.

Gentile S, Ferrero M, Vaula G, Rainero I, Pinessi L.

Neurology II — Headache Centre, Department of Neuroscience, University of Turin, Via Cherasco 15, I-10126, Torino, Italy, sgentile@molinette.piemonte.it.

We report the case of a patient who developed typical cluster headache attacks and was diagnosed as having multiple sclerosis (MS) at the same time. The headache attacks resolved after i.v. treatment with methylprednisolone. MR imaging showed a pontine demyelinating lesion involving the trigeminal nerve root inlet area, on the same side as the pain. The association between cluster headache and MS has been rarely described before. This case suggests that in patients with cluster headache neuroimaging is often useful in order to exclude structural lesions.

PMID: 17901919 [PubMed]

--------------------------------------------------------------------------------


Cephalalgia. 2004 Nov;24(11):980-4.
Prevalence of primary headaches in people with multiple sclerosis.

D'Amico D, La Mantia L, Rigamonti A, Usai S, Mascoli N, Milanese C, Bussone G.

C. Besta National Neurological Institute, Milan, Italy. damicodo@tiscali.it

The aim was to investigate the lifetime prevalence of headache and primary headache (diagnoses according to International Headache Society criteria) in multiple sclerosis (MS). The relationships between headache and clinical features of MS and MS therapy were also investigated. We studied 137 patients with clinically definite MS; 88 reported headache, 21 of whom developed headache after the initiation of interferon. The prevalence of all headaches in the remaining 116 patients was 57.7%. Migraine was found in 25.0%, tension-type headache in 31.9%, and cluster headache in one patient. A significant correlation (P = 0.007, Fisher's exact test) between migraine and relapsing-remitting MS was found. Primary headaches are common in MS patients. Further studies are needed to clarify the mechanisms underlying this association, particularly the association between migraine and relapsing-remitting MS, and the role of interferon in the development of new headache.

PMID: 15482362 [PubMed]

Welcome!

You found a reference to the use of oxygen, but at 7 lpm you will get little if any relief.  I used 15 lpm several years ago with mixed results, and quit thinking it didn't work for me.  Recently I started using 25 lpm through an O2ptimask (available through this website).  I can now knock out a hit in as little as 5-8 minutes.  BTW, the O2ptimask was developed for us clusterheads by Linde, and I find it to be far superior to the old non-rebreather.

You will find a lot of info available here that is not available in the vast majority of Drs offices, plus you have a caring family that is here for you whenever you need us.

Jerry

Bob Johnson wrote on Sep 7^th, 2009 at 12:31pm:


  I have learned a huge amount from this website and am really most grateful to you and others who have contributed to it.  It is an immense relief to at last know what has being causing me so much intense pain, for so many long years, and that I am not alone.  There have often been times of deepest despair, when I have become extremely depressed by the pain and entertained suicidal thoughts, however I now feel there is hope and get great comfort from knowing that there are others who really do understand what living with this wretched disease is like.  Thank you!

I found the section on water x 3 very interesting because many years ago, during the period when my CH was episodic, I discovered that there seemed to be some sort of correlation between the amount of water that I consumed and the frequency and intensity of my headaches.

At the time, I was under the impression that my headaches were sinus related and so imagined that as my headaches always occured when my left-side nasal congestion was particularly bad, that dehydration resulted in thickening of mucus causing congestion, leading to headache.  Not a very scientific appraisal I know, but that's how it seemed to me.

Despite my acquired habit of drinking large amounts of water daily, I have recently increased the amount that I consume and decided to stop taking any alcohol (not that I was consuming much anyway).  I am pleased to report that the initial results seem to be very favourable.  This coupled with drinking Red Bull, when attacks seem imminent, also seems helpful.

Meanwhile, I am still waiting to obtain my cardiologist's approval to take Verapamil and Imiject!

Hi boxcorner,

My case is very similar to yours as I was misdiagnosed with sinusitis for 15 years. The nose congestion that comes with the attacks plus the fact that I got them during altitude changes led me to believe that air with a different pressure became stuck in my sinus causing the mad pain. Also I successfully aborted a few attacks with cortisone nose drops. (Most of the time it only made it worse though)

Luckily my ORL was a very ethical man so when I begged him for surgery he instead referred me to a neurologist as there was nothing wrong with my sinuses.

I started on sumatriptans and it was good in the beginning. But then it seemed to increase the length of my cycles. I had 3-4 weeks cycles for my first 15 years. My last cycle lasted 4 months until I switched to O2.

My first neurologist laughed at me when I suggested oxygen saying it was obsolete and much less practical than sumatriptans. I suspect the pharmaceutical companies circulate this idea among neurologists, implying they would be silly to recommend oxygen.

Some people however seem to be okay with large doses of sumatriptans so just see how it evolves for you. If you have more attacks and if they become more painful, you might want to try oxygen.

Good luck!

Welcome to the board! The neck thing is funny, it's almost evenly split between hot and cold packs. I'm a cold pack kind of guy....bags of ice on the back of my neck right at the base of my skull. Others swear by the hot pack or the hot shower! Whatever gets you a whisker of relief.

Joe

I know that you have already heard about high flow oxygen therapy, but I will repeat it anyway!

I'm 56 years old and have been chronic for over 13 years. Buying my own regulators to provide me with 25+ lpm gave me my life back. It was like turning on a light switch.

I get angry with myself when I think about all of the hours of agony I endured needlessly - because I didn't try it sooner. No more exploring those dark and scary places in my mind while in the grip of such intense pain.

High flow oxygen therapy may not be the answer for you, but it certainly gives me almost complete control of my attacks in 3-6 minutes.

Marc