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OUCH(UK) Organisation for the Understanding of Cluster Headache

What the heck is this!

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Last post
#1 Tue, 05/12/2017 - 12:37
Last seen: 4 days 12 hours ago
Joined: 26/02/2014 - 14:04

What the heck is this!

Aaaargh! Since the summer I've been having shadows. Piercing pains in my right eye that an last all day, waxing and waning. Sometimes it's a burning, scraping, twisting feeling deep behind my eye.  My right nostril is frequently blocked and full of "pressure" (that, in itself, is very painful and can last all day.)  I've had very few completely PF days but mercifully I normally sleep well.

This morning, after 6 months of this rubbish, I've had what feels like a real CH attack.  It was mild and it's been a long time since I've had a bout of CH so I can't be sure.  But I'll be pretty miserable if this now turns into a proper bout of CH.

When it first started in June, I had a few episodes that felt like low-level CH attacks.  Indeed, my neuro thinks this is what it might be.  These 'attacks' became quite regular but extremely mild. I'd have a few a week.  But they'd weakened and almost vanished, and as they'd never been serious I wasn't bothered about them.  The whole 'bout' seemed to have ended a few weeks ago, but over the past 10 days it's built up again.

To any other CH sufferer, this may all sound a bit pathetic! I mean, I certainly would't swap it for 3 full-blown attacks a day. But I just want to know what's wrong with me.  I had typical episodic CH for a few years between 1992 and 1999. From 2000 I began having bouts of shadows but they didn't normally result in attacks.  CH attacks began in 2002, 2003 and 2004 but were apparently stopped almost immediately with Verapamil. My last CH attack was in 2004. My last long-term bout of shadows ended in 2007 and I seem to have been in full remission since then.  I gradually came of verapamil and believe I was totally free of it by mid-2009.

Stress/anxiety/excitement seem to be a factor. I probably felt best after I'd had a holiday, didn't have a lot in the diary to look forward to and had the holiday blues!  Work that one out.

So I'm afraid that this is just a bit of a vent.  For amost a decade I was pain free and had dared to believe that I might have escaped the clutches of this monster.


Wed, 06/12/2017 - 10:18
Last seen: 18 hours 26 min ago
Joined: 21/03/2012 - 15:16

Hi Joe,

Hmmm, my lay person's view is that it sounds as though your CH may have mutated to something like SUNCT or SUNA. I stress that it's only my lay person's view.  This may sound daft, but take the 'Do I have cluster headache?' questionnaire and see what it comes up with.  Depending on the result, another chat with your neuro may be in order. Whatever it is is disrupting your life and your state of mind and you need to find out what's happening. 

Good luck and keep us posted

Val. Bye

Wed, 06/12/2017 - 15:25 (Reply to #2)
Last seen: 4 days 12 hours ago
Joined: 26/02/2014 - 14:04

HI Val, I hope you're well.

Yes, I have to agree that if I take the "CH Entry Exam" for the symptoms I've been having over the past 6 months i'd fail it!  My neuro actually did a scan of my face when I saw him in August - something I'd never had done before.  The results indicated that I WAS NOT in bout.  I don't know whether the scan is particularly accurate, but it was interesting nonetheless.

They suggested trying indomethican to rule out HC, but as my symptoms improved quite a bit I haven't been in to try it (they want to give me an injection because I have reflux, but G&StT's is a long journey for me).

I'm now trying to get an appointment before Xmas.

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