OUCH(UK) Organisation for the Understanding of Cluster Headache


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#1 Tue, 08/02/2022 - 19:09
Last seen: 2 years 4 months ago
Joined: 08/02/2022 - 18:34



I have a few medical issues one of them being cluster headaches  which i've had for at least 20 years. They were diagnosed by a neurologist.  I've only ever been prescribed cluster headache medication on a few occasions in all those years because i've had terrible side effects from them. Since then i've only ever been given co-codamol 30/500 by my GP for any pain. I avoid taking these because apart from not taking the pain away they affect me so much with severe itching and they make the headaches worse as they wear of.

About 3 years ago I went to my GP because the headaches were increasing in intensity and frequency and was seen by another neurologist who i asked if i could have oxygen therapy instead of other medication. He point blank refused and said i may have sleep apnoea that may be causing the headaches. I pointed out that they dont always start at night time although a lot of them do but he wasnt having any of it. He then said i might have become addicted to the co-codamol 30/500 which is ludicrus because i only take maximum about 8 in a whole month.

He sent me packing after saying he would refer me to be tested for sleep apnoea, he offered no other medication or solutions to my pain. I was very upset. 

I did have a sleep apnoea test and it showed that i probably have severe sleep apnoea but i havent had a proper diagnosis for it or any help for that because the pandemic happened. I've just been left with no help from anyone and i'm getting the clusters all the time.

I've asked my GP to refer me again to another neurologist for a second opinion but she said it may take more than 12 months for an appointment to see anyone.

All i want is some oxygen therapy  ...... why is it so hard to get any. I cant stand going through this pain anymore and i'm desperate for help for it but doctors make you feel like you need to beg  Sad

Wed, 09/02/2022 - 11:03
Colin Allen Vic...
Last seen: 1 hour 7 min ago
Joined: 21/03/2012 - 15:19

Hi Neet, can I suggest you contact the National Migraine Centre in London. They also treat CH patients. You will not need a referral from your GP. Tell them you have been referred by OuchUK, and I'm sure you will be contacted quite quickly. I have to say that your GP is being extremely unhelpful,and shows a complete lack of knowledge on the condition.

Good luck.

Colin Allen

Vice Chairman

Wed, 16/02/2022 - 10:49
Kez2211's picture
Last seen: 1 year 4 months ago
Joined: 31/12/2021 - 15:41

Hi, I am in a similar situation. Was prescribed sumatriptan injections but after only 3 weeks the Doctor think I have overused them and caused headaches.  They only prescribed me 6. So how I’ve done that, I don’t know.  I have asked for oxygen but told I can’t have it as I smoke, though I only smoke outside and usually only when out.  I am awaiting a call from the practice pharmacist to discuss my so called over use. I’m fuming. I have been left without anything at the moment. 


Thu, 24/03/2022 - 11:07 (Reply to #3)
Last seen: 3 weeks 5 days ago
Joined: 26/02/2014 - 14:26

Hi Kez,

You should be provided with 2 injections per day for a month at a time.  It may be that your GP is mixing up Migraine and CH as for Migraine sufferers they are restricted to 6 per month due to possible rebound attacks, but this is not a problem with CH.  Two injections per day is the correct way.

take care


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