I have always been prone to headaches since a young child, as far as I can remember most of my childhood I was on some sort of medication for headaches with the doctors always stating that it was sinus related and nothing else. This was back in South Africa in the mid to late 90's.

I moved to the UK in 2004 and didn't have anything headaches that I could compare to being a cluster headache until something happened in 2006 which I can only describe as horrific. These headaches started occurring literally post orgasm where I would go from elation to a crippling burning pain on the left side of the head (temple and eye region)

The pain would last around 30 - 50 mins where I would find myself curled up in the foetal position either squeezing my head, punching myself, screaming for the pain to end, crying, begging to the MAN upstairs to make it stop (I am not religious in any sense) wishing I had a gun to make it stop etc. My partner found me once with my head between the 2 sofas using one of them to hit my head in between the other screaming for the pain to go.

This lasted for around a week before I headed to the doctor, I was diagnosed with Cluster Headaches and was given Imitrex Nasal Spray for when an attack happened. This did lessen the time I had a headache for but did little for the pain. After around 3-4 weeks the headaches stopped and I returned to normal.

I was pain free for around 2 years before another attack occurred but now my attacks don't seem to come in the typical "Clusters" that these headaches are renowned for. My headaches will happen maybe 4 - 6 times a year but not in clusters, I will randomly be woken up in the middle of the night with an attack that will last around an hour and then no attack can occur for months after that. I have read about cluster headaches and it seems mostly to be attacks that happen clusters rather than just 1 random attack.

Now I do know the difference between a headache, migraine and a Cluster Headache. My single attacks have all the characteristics of a cluster headache. Quick onset, extreme pain, my left eye droops (same side as the pain) left nostril pours, pale, excessive sweating, crying, rocking, cursing foetal position, punching myself, begging for the pain to stop etc.

Does/has this happened to anyone else? Can these headaches not come in "Clusters" but rather randomly?

Truly, Wazza, almost none of us here would ever say whether you're a CHhead or otherwise. In the words of the sweetest lady on legs, "We're not doctors, but we're expert patients".

Up on the left of your screen is a burron marked "cluster quiz". Have a look at it then ask all the questions you please.

We're here to help.

Hey AussieBrian,

Thanks for the response mate, I did the test and it said possibly but it was more to see whether other sufferers have experienced the random attacks that I am receiving or whether its more episodic or chronic that most sufferers are affected by.

You have an excellent support group in the UK which you should explore:   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I understand that you have the right to by-pass local medical care and move directly to a headache clinic for diagnosis and treament. OUCH can advise you.

When you have headaches which don't fit the usual pattern, it's necessary to consider that it may be one of a number of disorders which mimic Cluster but which are not headache disorders. Why a specialist is important in such unusual situations.

Dear Wazza - I suffer from CH for 30 years and during most of them I didn't have complete cycles but only 10-20 hits a year. Had my first nocturnal attack only 15 years ago. Only in the past 5-6 years my cycles are by the book.

So yes, it's possible to have CH for years without actual clusters of attacks. I suspect the different patterns are connected to different kinds of triggers.