Hello everybody,

My name is Ade, and I've been living with CH for about 25 years now. I was undiagnosed for the first 5 years (I didn't really understand what was happening), and mis-diagnosed as a migraine sufferer for a further 5 years. Those first 10 years were sheer hell and are etched on my soul forever.

My usual cycle is late Dec/ early Jan to around April, averaging 10-14 attacks/ week, every other year. Untreated, attacks last 2.5-3 hours (although it feels more like days...). My last cycle was in 2012, and was 'late', in that it started in April and went through to around August.

I'm currently in-cycle, and currently on month 5. Christ, this is beginning to wear me down. I swear it gets harder to cope with every time :(

In the past I've tried steroids, which played havoc with my sleep and appetite, so I had to stop taking them. Recently I've been on anti-depressants (Mirtazapine), which just made me feel even more knackered than usual, making things worse, so I've had to stop those as well. I use Imigran jabs for the CH, which work well enough, I suppose, despite the 'spiking' (even on a reduced dose).

I live a pretty solitary life, single (always have been), not many friends (I've always valued quality over quantity when it comes to relationships), and don't really have anyone to talk to about CH. It's so hard to get people to understand what I go through, which is why I'm here.

I recently started a new job in a new location just as I came 'on-cycle', and am finding it increasingly hard to cope. I just want the f**kers to end, so that I can get back to my normal life, such as it is. Had a bit of a break-down at work a couple of weeks back (uncontrollable tears and shaking), which hasn't really helped my reputation at work (I'm guessing by now most people think I'm a bit of a 'basket-case'). I've been fully open with my employer about my condition, but I think their patience is beginning to wear a bit thin as it's now affecting my ability to cope at work (I test mobile app's for a living).

I feel constantly stressed, waiting for the Sword of Damocles to fall, coupled with the fact I think I have a bit of PTSD from those first 10 years without effective treatment. Each attack I get brings the memories of those first 10 years flooding back. Could really do with some words of advice and hope from other long-term sufferers.

Well, that's it for now. See you on the boards. Wishing you all PF days and nights.

Ade.

Hi Ade, and welcome, sorry you had to find us.
Their are lots of treatments out there you can try
to manage your CH's. The front line attack is
Verapamil as a preventative, Then theirs oxygen
as an abortive, also lots of folk get success by
downing a Red Bull energy drink at the first
sign of an attack, you need the one that contains
Taurine. Their is a good support group in the UK
called Ouchuk, maybe give their helpline a call
to get the forms you need to get set up with oxygen.

Best Hoppy.

Urge you to contact your excellent support group:
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They can guide you through your health care system. You have a right to by-pass your local doctors and be treated by headache specialty centers.

This is an especaially important move for so many UK folks complain about the meager/uinformed treatment they receive from their local doctors.

There are very effective treatments available to you but finding an experienced doctor is, of course, essential.

Best wishes....

You have friends of quality and quantity here who understand all too well. Come and talk as often as you need to. We'll always listen.
Maz.

Hi Ade and welcome. You've now got an extended family with people all around the world who know all too well what it is like to have CH either as we have them or support someone with them. So feel free to ask anything CH related and you'll get answers, where possible, from people with experience.

It sounds like you still haven't found a good headache specialist with good skills and experience in dealing with CH. I'd look at the OUCH website or use their phone helpline to locate someone local to you.

The key to dealing with CH is to have an effective preventive that cuts down the number of CHs you get coupled with abortives that can rapidly kill off a CH that gets through. Once you've both in place then it makes a huge difference to how you can handle having CH, so you can get on and enjoy life.

Read up all you can here and you'll learn more than most neurologists will ever know. Ask all the questions you can think of too.