Hi all
From a small country town in South Australia--and yes a CH lady!  Note I did not say girl (63yo)!  Have gleaned a lot of great information from your site; thank you. 

Also a forum member from an Australian site. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Not a big membership as there is very little known about CH is Australia where we struggle to find a local doctor with any great depth of knowledge in this area. 

My first inroad with a neurologist was not particularly satisfactory either.  I was only diagnosed about 2 years' ago and have been on a bit of a roller coaster since.  One of the biggest problems I have had is explaining the severity of the pain (I refuse to call it headache) to ER staff when requesting oxygen and assistance with pain relief.  Whilst trying to maintain some composure when one wants to grind ones head into the wall does not go down well I am afraid.  At least now my local ER people have some knowledge now after a recent week's hospitalisation where they saw me in full unmedicated state.  Then their response was a little different, but they felt unable to assist as medication "not ordered".  So---they left me on my own with head jammed between a cupboard and a soap dispenser.  The GP actually got cross with me because I was not lying down!   So much showed a total lack of knowledge of CHs.  They know now!!

I thought that this actually showed a hole in our health care generally.   A lack of understanding about pain, it's intensity and how it effects people.  Whilst I did not mind  when others with more obvious injury ie broken legs, or possible heart problems etc etc being seen in front of me or treated before me--to know that guys with fish hooks in fingers were being treated before me even if having come in after me I found very stressful and didn't help my agitation stage.  It is the old story--if it cant be seen or demonstrated it cant be all that bad.

I feel more confident now of my ability to handle myself during attacks (like clockwork on wakening, 4pm and 7pm) after receiving a bit more attention from another neurologist and another sojourn in hospital.  His simple message was--feel an attack coming--take Imigran/Sumatriptan, dont hesitate.  Repeat in 2 hours and take up to 6 a day.  If not managing "call me" immediately to be commenced on IV Cortisone.  So far this has not been necessary--coping on the Imigran. 

My regime is simple:
Verapamil 160mg twice day
Sandomigran at night
Currently coming off cortisone.
Imigran 50mg up to 6x day
Oxygen at the ER if not managing.  Very difficult to get oxygen for home use.  (I did find in hospital that the use of oxygen did not always help; I got quite fractious with it--especially when the staff insisted I use when 2 hours into an attack "because it was ordered".  I found that I became even more agitated using it than not in these instances.)

There are so many differing treatments and messages; the key obviously is to find what works for you--and when it stops--to go back and get further help.  Look forward to roaming your site.

Cheers
Dusker

YOu will have to do what so many of us have done: educate the doctor so that he can effectively treat you. There are loads of good medical materials which we can pass on but you can start with printing out this article and giving to the doc.

If you afford it, the first book (below) is written for M.D.s. Might give to your doc.
=========
 
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]
============

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.

Thank you all.  Happy to say pain free for a few days now; great feeling.  Will follow up on all your suggestions.

Hi Cavaliar
way off the mark mate!!  62 yo, retired on York Peninsula.
Have had a very interesting life revolving around work and career, married with daughter and now grandson and looking forward to a very "full" next few years.
Cheers
Dusker