...and for what seems like an eternity i'd always thought there was just something strangely wrong with me and my brain.

I'm 36 now, 37 in September, and for the last 15 years (can't believe it's been that long) I've suffered with these headaches. Headaches that I had trouble explaining to people just how painful and debilitating they are for me. So painful sometimes I end up rocking back and forth clasping my head wondering what the hell was going on and why does no-one else suffer with these, not that others suffering would bring me any relief of course but that I wasn't alone! Well it seems I should have looked on the internet a lot earlier!

I'm wondering how much more of this I can take sometimes. I've been to the doctors before, admittedly not recently, but they seemed to not be interested in the symptoms I describe to them, once told by a doctor "well they can't be THAT painful..." and so I was flummoxed with that because they ARE that painful (after looking at your kip scale I can see I've been all over that, currently sitting here writing this with a persistant shadow left from an attack that started when I went to bed last night and ended about 3:30am) and why would a doctor not accept what I say? The pain, the very really painful pain, so much so that I want to scream out and destroy things around me, but I don't, just deal with the pain, try get some fresh air, move around, do ANYTHING to distract me from this knitting needle piercing my right eye and going through into my skull, on one side of my head and temple, right eye totally bloodshot, weeping tears, feeling swollen.

My best way of dealing with an attack now is to seek solitude, silence, darkness and coolness, then sit comfortably and try to attain some kind of meditative state where i'm putting the pain inside a box. Sometimes I can shrink this box until it becomes a pinprick in the front of my head, but it take some concentration to maintain that, feels slightly better though. Or else rubbing my forehead and temple with my knuckles, rocking them on the skin to create a sensation other than the drill going through my head. Other times I just can't do anything and try and hide from people so I don't have to try and explain 'it's just a headache...'

I've been having a bout of these now for the past couple months or longer, not sure to be honest because I've sort of just accepted I suffer with these and just deal with them when they occur, taking painkillers in the vain hope they may kick in ASAP. Normally doing bugger-all for the pain.

I have noticed some triggers though. I don't touch alcohol anymore because it triggers these headaches within minutes normally. I guess my smoking doesn't help though. Sometimes that can be a trigger too.

I have an appointment at the doctors next Tuesday and i'm going to attempt to get my doctor to accept the condition I believe I have, that being cluster headaches. I've done a little reading on here and various other places on the net and i'm convinced that what I've been suffering with is definitely cluster headaches. I feel I should have kept a diary of these before but i'll have to start that now.

This CH has been affecting my mental health too. For years I often declined to socialise because i'm worried if an attack occurs i'll be stuck with a group of people who have no idea what's going on, i'd have to make some kind of hasty, dodgy exit to get away from it all and be alone and silent... "Oh that weirdo's gone again...". either that or sit there and try cover it up like I have done at work for years, until someone goes "hey what's up with your eye" or the like, then I have to make some kind of crappy explanation that it's a headache...  :-?

It feels a little bit of a relief to have found out a name for this condition and at least realise i'm not the only one, I really did think it was just me. So sorry about that long winded intro but I needed to get that off my chest somewhere it would maybe seem appreciated.

I live in Norfolk, UK just so you folk know.

Thanks for reading in advance  8-) hopefully I can start to find a better way of dealing with this now.

Hi redeye, glad you found us but so sorry you needed to. I'm in the UK too.

First of all, you are not alone. Although this condition is very rare there are thousands of us around the world, and we all know what you go through.

The first thing you must do is get a definate diagnosis, as there are several headache types which mimic CH. They all feel the same, but have different causes and therefore respond differently to medication types. What works for one kind of headache will not work for another. Do some research on cluster headaches, parosyxmal hemicrania and trigeminal neuralgia.Print out some info to show your GP, and ask to see a headache specialist/neurologist.

If, and I repeat IF it does turn out to be CH then there are abortives and preventatives which will help. Sumatriptan (sometimes called imigran) is the best abortive. The tablets are too slow getting into your system, but the nasal spray is better. However the auto injections are best and will abort a kip10 in under 10 minutes. You can only use 2 per day though.

Every ones favourite abortive is oxygen, but it must be used correctly.You need a flow rate of at least 15 litres per minute with a non rebreather mask. The wrong flow or mask and it won't work. I use oxygen when I'm at home and save my 2 injections for when I'm out.

Save your money on pain killers. Nothing works - not even morphine.

Hope I've helped a bit. Please get that neuro appointment. The quicker you get a diagnosis the quicker you will get some help. Feel free to drop in any time. You will learn a lot from this site.

One last think. Look for a post entitled "123 days pain free" by Batch. It's in the medication therapy and treatment board.  It's a long read, and there are hundreds of posts relating to it. Its all about a vitamine D3 regimen which has had absolutely spectacular results for 80% of folks who try it. If you send a personal message to Batch, he's a great guy and he will help you get to grips with it.

Good luck
Maz.

You have an excellent support group. Contract thelm.

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I understand that your health care system allows you to move directly to a headache clinic, by-passing local docs. The support group can guide you.

Many of our message from GB complain abou the poor quality of medical care around headache and low levels of skill. All the more reason to move to a speciality clinic.

Best wishes.....