OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824


7 posts / 0 new
Last post
#1 Tue, 12/06/2018 - 15:46
Kirstybob123's picture
Last seen: 4 years 9 months ago
Joined: 12/06/2018 - 14:47


Hi all, just a little back story, I'm in my first bout of Cluster Headaches. I've been diagnosed by my Neurologist who was extremely helpful. I'm 8 weeks in, and for around 6 weeks I've had hardly any sleep, ranging from 1-2 hours a night. At the beginning I was being prescribed a handful of things from the GP that shouldn't have been given to me. Now after meeting with my neurologist I've been prescribed steroids and verapamil but after 5 days I have no relief. Injections are a life saver though. 

I'm finding this all very difficult mentally too, I'm extremely stressed that this could be chronic. Trying to come to terms with how much my life has changed has been distressing. I feel for all of you. 

sorry for the ramble- getting over afternoon nap attacks!


Thu, 14/06/2018 - 14:27
Last seen: 9 months 2 weeks ago
Joined: 24/03/2018 - 21:13

Hi Kirsty,

Sorry to hear you are suffering, but glad to hear you have a helpful Neurologist.

Are you currently using Oxygen? f not, please speak to your GP and get it prescribed. I've been Chronic for nearly 12 years and I wouldn't still be here without the oxygen.

The people on here are great, especially the helpline.

Mon, 18/06/2018 - 10:43
Dorothy's picture
Last seen: 5 hours 11 min ago
Joined: 19/02/2014 - 10:16

Hi Kirsty

Melatonin has been found to be helpful to aid with sleep for some sufferers, you could ask your GP and he may be willing to prescribe it for you. What dose of steroids have you been given? The thing is with steroids, they do tend to keep you awake at night. I remember once writing a load of poetry during the night when I was wide awake on them - then I got up and did all the cupboards out!

I wouldn't worry about going chronic yet, its very early days and you'd have to have it continuously for a year without any breaks before being considered chronic.

Hope it ends soon for you.

All the best


Mon, 18/06/2018 - 16:33
Last seen: 3 years 1 week ago
Joined: 04/06/2018 - 09:55

Hi Kirsty

I have also just been diagnosed in the last couple of months.

I used the site to help me get Oxygen, it should be delievered in the next 2 days and I have high hopes but it's been  a rough journey.  My neurologist couldn't prescribe Oxygen so he wrote to my GP. I then went to the GP who refused to give me Oxygen. It wasn't until I read the posts on here that I went back fully armed with the forms and strong resolve.  They weren't going to fob me off again... However, I waited a week and still nothing so I chased the surgery who told me I had been refered to a respiratory nurse. I then got a letter for another appointment a month in advance... so far the whole episode has taken nearly 4 months.  It beggers belief. Anyways, today I rang the clinic admin at the hospital and they put me through to the respiratory nurse. She was an absolute angel and completly understood how frustrating the whole journey had been and has arranged for the oxygen to be delievered. I finally found someone with no issue with the cost just in helping me with my pain....Now I just have an issue with the GP who tells me not to use the sumatriptan unless I really need it (expense more important than patient care?!).......like there is such a thing as a little cluster headache???!!

Good luck Kirsty, it seems horific now but you will learn to adapt.

Jo Mc


Fri, 20/07/2018 - 06:48
Last seen: 4 years 8 months ago
Joined: 20/07/2018 - 06:10

I was a call center agent for 2 years and a half. I worked in a graveyard shift so that's why i am awake at night and sleep the whole day. And suddenly i quit my job because of my personal problem. And now i am having a hard time to sleep at night because i get used to being awake at night. So this is my problem now i want to sleep in a normal way but it didn't happen, so i told my friend about this then he told me to try this marijuana thing as a medicine i did not believe him at first but i try it and it works for me and now I am sleeping at night at peace. Here is an article that i read about it https://www.greenmed.io/blog/extracts-and-tolerance-how-to-keep-yours-low/ you should read it

Sat, 21/07/2018 - 21:34
Last seen: 3 years 8 months ago
Joined: 28/06/2018 - 19:19

I feel for you it is such a scary life adjustment even in the short term. I'm hopefully just coming to the end of a 6 week cycle. Best bit of advice is focus on anything positive and come on here when need to. No one fully understand the mental impact of it unless they've suffered from it i dont think the name helps as they hear headache and assume paracetamol can stop it. What dose of verapamil are you on? I've been on it a week and it has made a massive difference cluster wise that alongside the injections are lifesavers. It will tire you out though. You need to make sure as well your gp doesn't fob you off. Mine told me not to use the injections daily as it was not advised - which is a lie. She will still only give me 2 at a time luckily the receptionists are lovely and always get me same day prescription so I never go short and I always make sure I have 2 in. They also won't prescribe me oxygen saying that they don't do it but I am going to keep pushing as when I had it at hospital it really helped.

Here's wishing for some pain free days for everyone x

Sun, 29/07/2018 - 09:03
Dorothy's picture
Last seen: 5 hours 11 min ago
Joined: 19/02/2014 - 10:16

Normalise, Melatonin works well to help with sleep pattern.

Sarah, did you get your oxygen sorted? GPs can definitely sort it for you using a HOOF (Home Oxygen Order Form) which is downloadable on here. If you go into Menu/support/downloads you will find oxygen advice in there. Don't give up. It is in the NICE guidelines for GPs to follow that oxygen should be prescribed.


Login to add comments

Share This

© OUCH(uk) 2023 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368