Hi there,

First - a bit about me - I am 39, and live in London, UK. I am married, and we have been trying for children without any joy. Hopefully this is soon to be rectified as we are now in an egg-donation programme so fingers crossed...

I've just been diagnosed with cluster headaches although this is my 3rd major bout! I first had an episode (still not 100% sure of the right terminology so bear with me) about 5 years ago - and it only lasted 5 days. I didn't even see a doctor about this because I was on holiday at the time, and they were gone by the time I got home. (I am sure you are wondering how the hell I could have dont this, and looking back on it I'm not sure myself, but I think I just thought they were migraines and that a doctor would tell me I was wasting their time.

The second time was in January last year, and I woke up at 2am with the most incredible blinding pain above my right eye. I dont need to tell you how bad it was, and my husband (fiance at the time) drove me to A&E (ER in the US) immediately. They said it was probably sinus pain, and to be honest, by the time I was seen the pain was starting to subside. To cut a long story short, I had the same pain every day for the next 2 weeks, and despite 3 trips to hospital and several to my GP, I was being told to give the antibiotics longer to work!!! (even though I had no other symptoms of a sinus infection!) Eventually we paid to see a ENT specialist who did a CT of my sinuses which surprise were clear! He then sent me for an MRI... This is where the story takes an unexpected turn... They rang me that night to tell me that I had a LARGE meningioma on my right side cerebellum, and that it had to come out asap. I saw a brain surgeon the next day who prescribed high doses of dexamethasone (sp?) until the operation which was 5 days later. I asked him if he thought this was what was causing the headaches and he laughed and said "undoubtedly!"

Anyway, after the op, the headaches disappeared and I thought I was cured... Until 2 weeks ago, when they returned with a vengeance. I went back to my GP, who in turn sent me for a scan, but the tumour was showing no signs of regrowth... Having had at least 1 headache a day since, and sometimes 2, I have finally been diagnosed with CH. This is a lot to take in. My neurologist said that the tumour was not what was causing the pain, but that the cortico-steroids that I was given probably relieved the episode.  I am now left reeling from being told that there is no cure to this horrid illness. I had never even heard of CH until a week ago, but when I read the various websites I finally felt like there were people out there who understood what I was talking about.

I have been prescribed a short course of prednisolone (8 per day for 8 days, then decreasing by 1 each day til 0), and have also been given zolmitriptan nasal spray, and am off to see my GP about home oxygen. I haven't had a headache since the diagnosis but had  one literally an hour before. Previously I was taking such strong pain meds which although they helped, meant that for 2 hours afterwards I was completely doo-lally and unable to do anything!

My husband is amazing, but he hates to see me in so much pain. We are both now coming to terms with this and any advice would be greatly appreciated.

Love Abby x

Thanks Jobette! 

Well, I have just got back from my doctor and they have prescribed O2 so fingers crossed I should have the oxygen tomorrow...

My doctor is about as useful as a chocolate teapot  - she is about 80 yrs old and can hardly use a computer - it took about 20 minutes to explain what cluster headaches are! Oh well, here's hoping that the remedy works.

Cheers