OUCH(UK) Organisation for the Understanding of Cluster Headache


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Supporting a sufferer

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#1 Tue, 12/06/2018 - 21:13
Last seen: 4 years 9 months ago
Joined: 12/06/2018 - 20:54

Supporting a sufferer

Hello everyone,

my partner has been recently diagnosed with presumed cluster headaches. He has had a constant headache for the past 6 weeks with multiple daily bouts of severe excruciating pain around either eye and jaw. He is currently on co-codamol, paracetamol, amitript(anti-dep) and sumatriptan. We are really struggling with controlling the pain while waiting for the appointment with the headache neurologist. As the main support system I am struggling with helping him to deal with the massive pain he is experiencing. Can anyone offer advice as to how I can help him as best I can? At the moment I am just trying to support him with breathing exercises and meeting his demands as best I can as far as basic support goes. Any advice would be greatly appreciated. 

Thu, 14/06/2018 - 06:24
Last seen: 4 years 9 months ago
Joined: 14/06/2018 - 06:14

It is a nasty condition and I presume your partner is not on medication yet. I have found that Imigram Nasal sprays are the best and which can be prescribed by your local GP. Oxygen is the best home remedy but this will hopefully come after your consultation. A very basic way to relieve the pain I found was to sit on the toilet and rock back and forth whilst holding your sides of your head with both hands. It’s v funny but this only seems to work on the toilet seat and nowhere else. 

Good luck 

Thu, 14/06/2018 - 12:35
Dorothy's picture
Last seen: 6 hours 12 min ago
Joined: 19/02/2014 - 10:16

Hi Ash

You mentioned that your partner is on sumatriptan, is that the injections or the tablets? The tablet form takes far too long to work, so if it is cluster headache it's best to have the injections and high flow oxygen at home. If you have a browse through our downloads section you'll find a lot of information on that. Your GP can prescribe it on a Home Oxygen Order Form (a HOOF, also available here to download and print for your GP to complete) and depending on where you live, you might even be able to get a demand valve to use with it which aborts the attacks quicker. You'd probably find it helpful to have a chat to one of our advisers on the helpline for some support with this. I'm afraid if it is CH, paracetamol and cocodamol won't help at all. I hope you don't have to wait too long for your partner's neurologist appointment but meanwhile, ring the helpline for that chat, it really will help to speak to someone who understands what you and your partner are going through.

All the best


Sat, 16/06/2018 - 20:27
sandramac's picture
Last seen: 1 year 2 months ago
Joined: 26/02/2014 - 14:26

Hi Ash, nice to meet you, but sorry you have to be here! -- I am also a supporter so can totally empathise with how you are feeling and what you are going through just now! The first few days/weeks/ months/even years can be hard to deal with and cope with. We are here to help you and your partner through it as best we can! As Dorothy has mentioned make sure he has got sumatriptan injections or nasal spray to abort his attacks and push for high flow oxygen and an appointment with a neurologist who specialises in headache conditions! Make that phone call to the helpline, you will find it really helpful, 

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