OUCH(UK) Organisation for the Understanding of Cluster Headache


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Another newbie to the site but an old sufferer

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#1 Sun, 15/02/2015 - 10:49
Last seen: 6 years 12 months ago
Joined: 12/02/2015 - 09:02

Another newbie to the site but an old sufferer

Hi everyone

I have been suffering from cluster headaches all my life although (i have vivid memories of getting daily headaches after school at the same time and just having to get through them with no help or medicine). I was only diagnosed as such (with CH) about five years ago.  Up until then i was sent away and told to take headache tablets. ... great eh, we know how good they are! Lol

I suppose I am one of the more fortunate ones,  I get bouts of two to three weeks with two to three a day but i do get gaps the last one was two years.   During the bouts the head is always there a bit in the background just waiting to come out in full during a bout! My triggers are heat and atmosphere change.

I have, like many people probably, , tried many different tablets, none of which really work for me.   The only thing that seems to work is the nasal spray. ... Although this is not great and last night did not seem to work.  When I Have a head I try ti eat ice and chew it on one side of the mouth.... has anyone else tried this?  This does seem to help a little although it might just be the brain freeze!  Lol

I am wondering if there is any more effective treatments that I can try as like everyone I guess, when in a bout it takes over your life completely.

Many thanks for reading this and thank you in advance for any comments or advice. 


Mon, 16/02/2015 - 12:07
Last seen: 2 days 11 hours ago
Joined: 21/03/2012 - 15:16

Hello Matt and welcome to OUCH

Your story sounds all to familiar to us - but glad you now have a formal diagnosis.   You don't say if you have tried high flow oxygen to abort attacks and you don't mention the sumatriptan injections, they work much faster than the nasal sprays and are the best treatment for CH attacks.  Why not call our helpline, leave your name and number and one of our volunteers will call you back, you can discuss treatments, preventives and how to get oxygen much quicker than messaging back and forth on the forum. 

01646 651979


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