OUCH(UK) Organisation for the Understanding of Cluster Headache


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#1 Wed, 31/08/2022 - 19:50
Last seen: 1 year 7 months ago
Joined: 19/04/2022 - 12:40


my mother has been different with CH for 4 long years... i am the daughter and i cannot take this anymore!!!!

she was diagnosed last year...

my mother is becoming suicidal she's not getting the help she needs...

she doesnt have breaks she is in pain everyday it's worse now she gets the attacks every 2 hours she does take the sumatriptan injections but come backs even worse.

she has an appointment AGAIN with the neuro to get the oxygen is it worth the wait or what should we do now ?

what helped you guys? please let me know my mom is hopeless... but i will make her try anything to help her


Fri, 02/09/2022 - 13:52
Last seen: 3 months 2 days ago
Joined: 26/02/2014 - 17:02

Many of us can empathise with your situation, you are both suffering because of this horrible disease.

The years your mother went undiagnosed, and having a close family member witness the suffering is indeed torture. I think you'd benefit from a chat with a volunteer on the helpline.

High-flow oxygen has been a Godsend for many chronic sufferers, especially with 8 attacks a day, so, yes: It's well worth pursuing with the neurologist.

Fri, 11/11/2022 - 20:22
Joe ormond
Last seen: 1 year 4 months ago
Joined: 11/11/2022 - 07:55


I am currently 3 months into my 4th bout of cluster headaches. 

Over the past few weeks of this current bout my episodes went through the roof,6-7 episodes a day some mild ish but most very heavy,  I was on sumatriptan nasal spray and probably taking 4 sometimes 5 a day to clear the pain.

I called local gp to get more sumatriptan and when gp realised I was taken so many sprays ,overdosing on them ,he referred me to get oxygen, and I got it in 3 days. Basically if you are taking too much sumatriptan by spray or injection to relieve the pain your doctor should get you oxygen. 

It has worked for me , not every time but much better than sumatriptan. 

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