OUCH(UK) Organisation for the Understanding of Cluster Headache


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Just been diagnosed

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#1 Wed, 17/05/2017 - 15:54
Last seen: 5 years 10 months ago
Joined: 17/05/2017 - 15:25

Just been diagnosed

Hi everyone my name is angie and two weeks ago I got the diagnosis of cluster headaches. To be honest I had never come across these before. I have so much respect for any of you coping with these, I have never known pain like it. I went through the usual antibiotics, steroids, scans and numerous blood tests before getting the diagnosis. I have been put onto oxygen therepy and had oxygen delivered this morning by a wonderful, knowledge man (Neil) who was amazing a seem to so much knowledge and tips regarding this condition, more than my GP who does not really understand them. I have been signed off work for a week as I am totally exhausted from the pain and loss of sleep. It can only improve, right? 

Wed, 17/05/2017 - 19:39
Last seen: 2 days 19 hours ago
Joined: 21/03/2012 - 15:16

Welcome aboard Angie, but sorry you have to be here, because it means you are suffering.

Glad you  have the 02, have any other meds been prescribed for you, like sumatriptan injections?   And did you get your diagnosis from a neuro?   There is a document on this website that might be helpful to you, if you look at the drop down list under the blue button 'Cluster Headache', you'll find a document called 'The Basics.

Any questions or queries you can ask on here or at helpline@ouchuk.org and don't forget we have a helpline phone on 01646 651979.

Sadly I have to say that CH is at present incurable and a lifelong condition, but there are treatments that can make life much better for us and there are new treatments in the pipeline. 






Thu, 18/05/2017 - 20:48
Dorothy's picture
Last seen: 3 hours 13 min ago
Joined: 19/02/2014 - 10:16

Welcome Angie

So sorry you are suffering. Glad you got oxygen and from such a helpful 02 man. I think I might know who Neil is... He has such sympathy for CH patients and is very helpful, an extraordinary chap.

Don't be shy about ringing the helpline if you need advice as it's all very new to you. In the meantime have a good look around the website and downloads section.


Wed, 24/05/2017 - 09:50
Harrietjt's picture
Last seen: 5 years 4 months ago
Joined: 22/10/2014 - 12:47

Hi Angie,

Really hope the oxygen therapy proves helpful to you. Interesting you found the delivery chap so helpful. My husband (CCH 9 years) gets his from Dolby and we have found their staff to be great at all times including with emergency deliveries in the night. Apparently they are all trained to take CH extremely seriously due to the extreme impact of the attacks. If only everywhere else did the same!

Have you been correctly diagnosed early on? Or has it taken a while?

best wishes,


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