I have been suffering from CH's for almost 20 years now. I'm
episodic usually every two or three years. When i was free and
single I travelled a lot  therefore it was very hard to get a diagnosis.I
endured years and years of getting useless pain killers from doctors
who insisted i had migraines and who really didn't have a clue.

Finally after finding this site i was able to self diagnose and after
reading  the testimonials i had finally found some answers and to be
brutally honest I cried like a baby because i wasn't alone any more. I
i could finally approach the doctors with a greater confidence and get
some help. 3 years ago during the end of my cycle i finally went
private to see a neuro because the waiting list on the NHS was close
to a year. Hey presto i finally had a prescription to fight back against
the beast. I was prescribed Predesilone at 60mg for a week reducing
by two tablets every 4 days and then stop and also imigran
injections.

So it is during my present cycle that I finally got an
opportunity to use these meds.The steroids lasted about 3 weeks in
which time i had very minor shadows but as the dose decreased the
CH's intensified. . I then had to move on to my imigran, I remember
my first injection i thought 'Sweet Jesus' this is right up their with sex.
It stopped the faker right in its tracks. After 20 years of going full
blown into attacks i had something that finally worked. It didn't last
long though, the rebound headaches the increase in attacks the
increase in severity. My new doctor has been an absolute star we
discussed oxygen therapy and without hesitation he gave me a repeat
prescription until my cycle ends. During this time i have sucked up a
lot of 100% pure oxygen I'm surprised the NHS has not gone
bankrupt. We are very lucky here in N.Ireland as we get free
prescriptions for all on the NHS.

The one thing my doctor point blank
refused to give me was a repeat prescription for my presdesilone. He
cited all sorts of complications and side effects. I have read a lot of
posts over the last number of weeks and you people fairly know your
shit...! I'm new to all these medications for CH's and basically what
I'm trying to ascertain is this. If I'm only taking predesilone at those
levels every couple of years could it do damage or do you think its
manageable. My cycles last on average six to 7 weeks every couple
of years. The predesilone really works for me and it would save me a
lot of pain injections and 02.

SORRY FOR THE LONG POST

TONY

What is missing from your information is any mention of the doc putting you on a preventive medication AT THE SAME TIME you are using the pred. The Pred. stop a cycle quickly, as you know, but the attacks return rapidly when you stop using it.

A preventive medication takes several weeks to become effective and you want it in your body  when you stop the pred. The preventive will reduce the instensity & frequency of attacks so that you won't need as much of the triptan (abortive) med.

Print out this article (link on second line) for your doc as well as the med information in the second & third links. This is the kind of medical information which are more acceptable to docs and they give you some knowledge/authority to discuss treatments with him.
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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 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

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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.)

As i mentioned my new "Just fresh out of school Doc" has been absolutely brilliant in helping me deal with my CH's. He really shows an interest and is willing to learn himself. I have an appointment with him next week in which i will definitely take the information you provided on preventive therapy.

Cheers Bob & Joe


Lefty...!