OUCH(UK) Organisation for the Understanding of Cluster Headache


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New here - Hello!

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#1 Mon, 31/08/2020 - 21:13
sjeastwood's picture
Last seen: 2 years 4 months ago
Joined: 26/08/2020 - 16:52

New here - Hello!

Hi all, I'm new to the forums, but had my first cluster headache in February, 2013.  That was scary!  I had never felt anything like it and was damned scared something life-threatening was going on.  My wife was present and was busily researching online to see if an ambulance was required, while I rolled around, thrashing and crying, begging for the pain to stop, both clawing at my head and unable to bear touching it - it was a very embarrassing affair indeed, but something we have gotten used to now.  Thankfully, I've only ever had one when not at home and for that I grabbed a vacant meeting room at work, and my manager stood guard outside the door while I 'did my thing'.

I predominantly get them in February and October, though for the last 2 years I've had nothing in February, but been resoundingly thrashed by them in August and September instead!  They were pretty sporadic at first, but now tend to come in daily waves, and after having them back-to-back for 4-5 days my cognition is significantly impaired - I get 'foggy' and am not much use to anyone until I get some respite and return to normal functioning.  I think this accords with some other members' descriptions of finding themselves struggling to complete normal everyday tasks.  I do find that they drain me so much that I collapse into sleep once the pain begins to subside and then sleep off the exhaustion for an hour or more afterwards.

The move to home working and video calls during lockdown has been interesting as my colleagues have reported noticing changes in my behaviour leading up to the bulk of the CH.  I am aware that I get really irritable before I am consciously aware that a CH is on its way, but my colleagues have noted that my speech becomes a bit slurred and slower.  This makes sense as I am aware that my brain becomes foggy / 'syrupy' and I begin to struggle to follow a coherent line of thought, and it apparently manifests itself.  Then the CH hits and it's a case of staggering to a quiet room (my bedroom whenever at home) and 'riding it out'.  During this time, I am incommunicado - indeed, the world pretty much ceases to exist.  I have often said that, in the case of a fire, I'd have to be carried out by firemen as the pain becomes all-encompassing and I'd likely not even have awareness of the fire.  Some time after all of that, and the CH can last between 1-4 hours of thrashing about, I fall asleep, exhausted from my exertions.

I was fortunate in terms of diagnosis.  Between my 3rd and 4th CH I got in to see my GP who immediately referred me to a neurologist and an MRI.  Physical causes discounted, the GP concurred with my wife's instant diagnosis of a CH.  To be honest, just knowing what it is has been the greatest comfort in all of this - knowing that it isn't going to kill me and that the pain will end has been the greatest comfort.  I've seen the references on here and in the literature I was sent as part of the OuchUK membership pack to a number of medications, and think I may have lucked out a bit there.  My GP prescribed Sumatriptan tablets to see if taking those would help.  As I do tend to get warning, I have been prepared to give these a go (at only 6 tablets per prescription) but they don't appear to make any difference, which I see is not surprising.  If my bouts become more frequent, I will look at seeking injections &c.

Anyway, I am aware this is a bit long, so I'll shut up now (and I hope it's in the right place!).  I just wanted to say hello to everyone. Smile

All the best,


Mon, 07/09/2020 - 10:07
Last seen: 2 days 6 hours ago
Joined: 26/02/2014 - 14:26

Hello Steve,

welcome to the OUCH family.

You might find it helpful to give our Advice Line a call 01646 651979 and leave a message and someone will get back to you.  You need to see a Neurologist who is a Headache Specialist and the Advice Line can recommend one to you.  You also need Sumatriptan injections as the tablets do not work fast enough.  Also if you are in England and Wales your GP can order oxygen, in Scotland a Neuro has to do it.  See our Basics document on this website.  
Take care


Mon, 07/09/2020 - 21:06
Last seen: 3 years 9 months ago
Joined: 07/09/2020 - 20:38

Thank you Steve for so we'll articulating the onset and painful experience of Cluster Headache episodes.  Like you, I too have been suffering from cluster headaches for some years now.  I remember visiting this site before seeing the GP.

My GP diagnosed it as tension headaches and prescribed amitriptyline.  It worked for few years but now I am having it again and Amitrptyline is not working.  It is so debilitating.  Any advice here is welcome. Thanks, Tim

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