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Short story about myself and few questions.

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#1 Wed, 17/11/2021 - 17:39
Last seen: 7 months 5 days ago
Joined: 17/11/2021 - 17:07

Short story about myself and few questions.

Hello everybody,

My name is Ross and I am 23 years of age. I've recently been diagnosed with CH. I have been suffering with them since I was 16. It's been a right mess about back and forth from doctors and opticians. But 7 years later I finally have an answer. Well, not really an answer because nobody knows a great deal about it apart from its in the brain.

I find it hard telling collueges at work and trying to get friends to understand because 9/10 if I told them they just laugh. They think it's a bad headache, and that they've had them before. But If only they knew what pain a CH sufferer goes through. I just find it hard because nobody really knows when you open up about it. A lot of people have never even heard about cluster headaches.

few questions now,

I was wondering if anyone else suffered from CH at a similar age to myself?
Also I tend not to drink alcohol a lot because that seems to bring on an attack. Does anyone else have any triggers? 
I have the injections, the verapamil and hopefully soon the oxygen. Has anyone found anything else that helps? Any preventatives? 

thanks for listening! 


Fri, 19/11/2021 - 08:03
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 16 hours 39 min ago
Joined: 19/02/2014 - 10:16

Morning, Ross

So sorry to hear your story and you came to the right place to speak to people who do understand your pain. For a useful handout to give to friends, colleagues and family, go to this download section https://ouchuk.org/downloads You will find other valuable information there and I recommend browsing the website.

I have suffered since age 19 but I know of other sufferers who have been plagued by CH since childhood. It can strike at any age. Many of us - but not all, find that alcohol is a trigger. I'm episodic and as soon as i start a bout of CH i immediately stop drinking any wine. In between bouts I can drink white wine with no problem. I can't drink red wine at any time, or any other "dark" drinks. Rum, port, sherry, all big no-nos for me.

I hope you get your oxygen sorted out quickly and hopefully a demand valve, depending on where you live and who your 02 supplier is. You can read about demand valves here on the website. You'll find discussions on it if you put 'demand valve' in the search box.

Best of luck with it all!


Dorothy (Trustee)

Thu, 25/11/2021 - 17:17
Last seen: 2 years 7 months ago
Joined: 25/11/2021 - 17:05

Hi mate,

I was diagnosed with chronic cluster headaches at 21 and had the same problems. Alcohol used to be a trigger but isn't anymore, I have loads of other weird triggers like smells, coffee, cheese and onion crisps and loads more. With regards to your mates I had the same thing but people can be quite understanding when they realise how serious it is. Most of my friend group take the mick out of each other as lads tend to do so I find it quite fun to be around people who take it lightly when my family obviously are not to keen on joking about it.

With work I work in a high pressure city job so I know the stress of not wanting to publicise your condition. I would tell your manager at work and send them a link to understand the seriousness of your condition and as soon as people read about the severity of the pain they soon take it seriously. I didn't want to be labelled as the guy with headaches so I didn't tell anyone else but it is important to let managers and a couple of other people know for safety and to have the support you need. 

Really tough going through this as a young man or woman but you got this and happy to help if you need anything. 

Also I have used oxygen for quite a while but have never heard of a demand valve, can anyone explain what it is?



Sun, 05/12/2021 - 09:04 (Reply to #3)
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 16 hours 39 min ago
Joined: 19/02/2014 - 10:16

Hi Sam

You can read about the demand valve in our downloads section under Oxygen (02) Advice, Oxygen therapy


Dorothy (Trustee)

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