chronicclusterheadaches.co.uk

Em · Posted: Fri Sep 25, 2009 11:40 am Post subject: Emily's story

As promised to Reggieman (though a little late, but blame the unborn one giving me grief again), here is my CH story.

I'm Em, I'm 27, Canadian though I grew up in the UK and now live on a tiny island called Guernsey about 20 miles off the French Normandy coast. A usual CH pattern for me is 3 - 5 shadows a day of about Kip 3 - 5 (managed with coffee, etc) and every few weeks I get a short spell of Kip 6 - 8's (lasting maybe 3 - 6 days) for which I use o2. I never classed myself as chronic, but then when thinking about it I do get it every day. Albeit, VERY VERY mild, but still niggling away. I'm a lucky one.

My CH started in March 2006 while on holiday in Malaysia. I had 3 days of weird, painful headaches which were on and off, so it didn't stop me sunbathing too much. When I got home, they really ramped up. I would have days where they were not so bad and I could function, but every few weeks I'd get a 3-4 day spell of feeling like I was losing my mind.

My GP was great. He recognised that there was something going on and referred me to an NHS neurologist. On the first app, I happened to have a cold. This led to months of repeat apps with me telling them I didn't have sinusitis and them telling me I did. After complaining to my GP and keeping a diary (his suggestion) he mentioned that he thought I may have something called cluster headaches. I'd never heard about them ever, but went online to do some research (leading me to ch.com) and found that I was feeling the same way and I was also in a bit of a depression with this that I hadn't recognised before. He gave me some sumatriptan to try and also asked if I'd thought about seeing a private neuro just to confirm his diagnosis. After pricing it up, we decided to go for it just to end all this uncertainty.

I saw the neuro at the end of Sept 2006 and he read my diary for 5 mins and spoke with Stephen too and within 15 mins confirmed CH. He gave me a list of treatments and things that might work. What a scary list that was!!

I went back to my GP, who'd agreed to prescribe any recommendations the neuro made. We tried a few things and nothing seemed to work. I'd already got the tips about red bull, coffee and icepacks and I was managing most of the time with that. I also cut out alcohol and paracetamol when I noticed the pattern in my diary. I got myself some o2 and that also helped. After not having much luck with meds over the months, I decided to try melatonin. It helped almost instantly, especially as my hits had morphed from happening in the morning to the night-time. Though my GP wouldn't take the risk of prescribing (it's not licenced in the UK) he agreed to monitor me monthly to make sure it wasn't affecting me in any other way. That GP was a total legend and he really went out of his way to help me out however he could. A rarity amongst the GP population!

And that was my regime until I fell pregnant in March. I stopped the melatonin almost straight away and had a few shadows in the early days, but then it just stopped - either that, or I just didn't notice them so much while I was having 5 hour episodes of vomiting from morning sickness!!

And that brings us up to date.

I have the most amazing supporter in my husband, who is one of the best people I've ever met in my whole life. He's had his moments of frustration, but that just makes me realise that this isn't an illness that someone suffers alone - all the people around us suffer with us, just in a different way. We just have to let them in to help us when they can. It also makes sure that I don't get too self-pitying when things get bad.

Hoping I've given you enough information. Feel free to ask questions if I've missed anything out that you need to know.

Em
xx
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'Life is either a daring adventure or nothing' - Helen Keller