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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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Hi Goo, loads of the best help here, just read on and hang in there...
This is what the internet is for, bringing peeps together at the speed of light (distance no object!)
Have look at the oxygen info link on the left and learn about the most quickest relief there is!

Welcome and Respect

Gary

It would be helpful if you would tell us about the types of doctors you have available to treat your headache. Have you found anyone with some knowledge & experience.

If not, we can send you some basic information which will guide your doctor's treatment--if he will accept it from you.

Just a couple of examples of what is available:
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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]
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See the PDF file, below.
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Either one of these books would be a good source of information.

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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Explore this website:


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Finally, it would help us if you give a description of the kinds of care you have been given, the meds you have used, and so on.

bejeeber wrote on Feb 10^th, 2011 at 6:30pm:


Thx not sure whether its imitrex but i had several jabs when I was at the hospital

I imagine it was imitrex at the hospital.

Here's the thing about doctors/hospitals and oxygen for CH though: They are almost universally unaware of how to administer it in a way that will work for CH.

The effective method for using O2 has been known here for years, and has legions of enthusiastic converts among the forum members. News apparently travels at a snail's pace in the medical world.

But we don't have time to wait around for a snail's pace do we? That oxygen info link details the CH power user way to abort an attack - something that I bet you unfortunately wouldn't be able to find any doctor that has knowledge of, but fortunately you may be able to set up yourself.

bejeeber wrote on Feb 10^th, 2011 at 10:42pm:


Hey beejeeber and Potter,

Since this is the very first time I was put under O2 treatment, I'm not really sure what to say. Here's what I know. I heard the doc set the air level at 10. The "mask" I call it looks pretty normal just like what we use to strap on other patients as well. Before admitting to the ward, there's this huge 02 tank. After admitted to the ward, the O2 is readily available next to my bed without seeing the tank of course. Hmmm thats all I know. I was watching Vimeo vid by clusterbusters and it seemed to me that the mask looks really different than the one I had. It looks like a paper bag instead. Is that why its not working for me?

wimsey1 wrote on Feb 11^th, 2011 at 8:28am:

  Succinct and to the point.  Good stuff.

            Potter