Hi all
I'm Ange, from Christchurch, NZ.  I've been a member of the Australian site for some time and just found the link to this site through there so thought I would jump over and say hello.

At age 15, I awoke during the night to an excrutiating pain in the right temple, I was in tears, calling out for my mother, screaming curled up in the fetal position on my bedroom floor.  Mum tried to comfort me to no avail, then just as quickly as the pain came on, it subsided after approximately 30 minutes.   This happened again a couple of nights later, my mother took me to the after hours medical centre but by the time we got there, it was all over.  They suggested that if it happens again, I have a couple of paracetamol and go to bed. 

These pains continued in a sporadic pattern for a couple of weeks, several visits to the GP returned no results and no idea what was causing the headaches.

There was nothing more until about six months later when they started again.  The GP referred me to a neurologist who had no idea what this was.  After a series of food allergy tests, CT and MRI scans we were left with no cause and due to no cause, no treatment.

The pattern continued for several years.  Approximately every six months, for about two weeks, 4-5 headaches a day.

At age 20, I visited a different neurologist who prescribed verapamil.  240mg per day kept me pain free for about a year.  Then one day, out of the blue, another cycle started up.  This time, on the left side, with far more intense pain and more frequent attacks, up to 12 attacks in a 24 hour period.

The cycles became more frequent, every 2 to 3 months and each cycle lasting about 3 weeks. Still no diagnosis and no effective treatment.

A series of different medications over the next 5 years yielded no results; Cafergot Isoptin. Depakote Topamax are a few I recall along with pain killers such as codeine, paramax, naprosen, nurofen.

At 24 I fell pregnant with my son.  The miracle cure to these headaches for me – pregnancy.  Not one headache at all.  I was free.  Then the day after the birth of my son and all hell broke loose!  Back with a vengeance! Ten times as ugly and ten times as frequent!

This lead to a series of hormonal treatments, an effective one being depo provera.  The birth control injection!  This gave me relief for about two years, then suddenly stopped working and I was back to the old routine and have since become chronic. 

By this time, I was tired of having no results from doctors and specialists and began my own mission of researching headaches.  This is when I found information on CH. I suggested CH to my GP, she reluctantly agreed that this may be the case but was not convinced as apparently females don't get CH.

Over the last 12 months, I have found a cycle can be aborted with shock treatment of prednisone.  Once the cycle starts, and 80mg kickstart, tapering down over a few days, can abort a cycle after about 3 days, but then after a couple of weeks, a new cycle is starting.

I also suffer from depression, anxiety and frequent panic attacks which I strongly believe may not be a direct result if CH but of so many years of trying to manage pain, lack of energy, limited social activity and combinations of medications.

I'm currently in the process of trying to abort an exceptionally bad cycle with prednisone, for some reason it's not really having the usual effect.  I'm wondering if all the antacids I'm taking for the reflux due to having burned a whole in my gut are reacting with the prednisone this time around.  I have approximately 6-8 attacks per day, each lasting around 20-30 minutes. There is no pattern.  I was in a meeting today at work, feeling fine, then all of a sudden, that burning started.  I had to walk out of the meeting and go to my usual corner in the toilet cubicle until it subsided.

I am yet to find a truly effective treatment or preventative and am about to start on Batch’s B3 regimine. Will see how that goes.  I'll be happy if all I get is more energy to help me deal with this beast.  Constant exhaustion is just not fun.

I'm hoping this has made some sense, everything is quite fuzzy at the moment 

Hey HossDelgado
No a cycle starting straight after childbirth was most unwelcome.  Trying to care for a newborn and having to deal with CH was very much a challenge.

My son is now 14 and had grown up with watching me endure this.  He just leaves me alone now but will come if I call him...and brings me an ice pack if I haven't already got one.   Just had my head buried in the wall for the last 20 minutes and now have brain freeze from the ice pack and swollen eyes as that one had me in tears.

I have not found a GP here who will give me either O2 or sumatriptan.  I'm trying to find a GP here who actually understands/knows anything about CH...they are a rare breed!

Need to get a couple more ingredients for the D3 cocktail and will get started on it as soon as I can abort this cycle.  Lets see if I can extend my PF periods.  Reluctant to tell my GP about it for fear of being warned off the high dose of D3.

Would love to get in touch with any other Christchurch sufferers now that I see there are some here.  With that kind of support, maybe we can gang up on some medicos here and get some results. All this time, I thought I was the only one here.

Print this and slip under your GP's nose!
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Results: 3

1.Cephalalgia. 2008 Jun;28(6):614-8. doi: 10.1111/j.1468-2982.2008.01592.x. Epub 2008 Apr 16.
The incidence and prevalence of cluster headache: a meta-analysis of population-based studies.
Fischera M, Marziniak M, Gralow I, Evers S.
SourceDepartment of Neurology, University of Münster, Münster, Germany.

Abstract
Cluster headache is a trigemino-autonomic cephalgia with a low prevalence. Several population-based studies on its prevalence and incidence have been performed, but with different methodology resulting in different figures. We analysed all available population-based epidemiological studies on cluster headache and compared the data in a meta-analysis. The pooled data showed a lifetime prevalence of 124 per 100,000 [confidence interval (CI) 101, 151] and a 1-year prevalence of 53 per 100,000 (CI 26, 95). The overall sex ratio was 4.3 (male to female), it was higher in chronic cluster headache (15.0) compared with episodic cluster headache (3.8). The ratio of episodic vs. chronic cluster headache was 6.0. Our analysis revealed a relatively stable lifetime prevalence, which suggests that about one in 1000 people suffers from cluster headache, the prevalence being independent of the region of the population study. The sex ratio (male to female) is higher than published in several patient-based epidemiological studies.

PMID:18422717[PubMed]

Not to give up yet! Many of us have had docs lacking in basic training in headache BUT who were receptive to learning. We then feed them good MEDICAL information (from sources they recognize) on how to Dx, treat, etc.

It's not a risky effort for you have noting to lose except leaving a doc who can't help you. If fortunately, you find an ally whose ego is receptive.

When I moved and had to leave my last doc, I received a delightul letter from him thanking me for teaching him!

Beats wandering around trying to sort out the blind from the blind....