OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

01646 651 979

overseas +44 1646 651 979

Current Situation and Experience - May 2020

2 posts / 0 new
Last post
#1 Fri, 22/05/2020 - 13:16
Glen Mountford
Glen Mountford's picture
Last seen: 1 week 2 days ago
Joined: 18/05/2020 - 14:21

Current Situation and Experience - May 2020

Hey everyone, 

Firstly just want to say im a new member and super happy to be involved in a group with people that suffer this terrible illness as its one of the most frustrating thing for me to try and share and explain it to people who dont suffer, so to share experiences and information with people i think is imperitive to helping us all get through this illness as pain free as possible.

Iv often struggled to make sense of this illness and questioned my own sanity at times, i just want to share a bit about my story and no doubtly people can relate. I have suffered this for many years now and i think as far as severity and frequency it seems to change slightly each time. I am currently going through a cluster period where i can basically know i will get an attack every morning when i wake up. I have not tried all forms of medicine but have been prescribed sumultrapan injections that work really well and quickly. Currently taking 1-2 a day to try and get me through the day until that magical day arrvies and the off button is switched.

One thing i struggle with and im not sure how many other people can relate and it actually facinates me is the mental state and thought pattern i am in while having an attack compared to when im 'normal' . My mind goes to a complete different place and thoughts are out of control, i find it so strange that my body is self sabotaging itself, i like to think of myself as pretty mentally managed but during an attack im 2 different people. One part of me is trying to make sense of the situation and the other is trying to deal with the level of pain.One other thing i was onto was i always seem to get it around this time of year, i swear temperature plays a big part of it and sinus issues possibly.

Im really keen to hear what how people deal with this as there managment stratgies as i think we can all benifit from these discussions. I was not in a position to access medication yesterday and the attack brought me to tears . Im keen to look into the Gammacore and see if thats something more sutible for me in the future when i have access to a specialist.

Anyway i hope everyone is staying safe and if you are going through a period of this you are managing it best you can


Mon, 25/05/2020 - 15:41
Colin Allen
Last seen: 2 days 21 hours ago
Joined: 21/03/2012 - 15:19

Hi Glen,and sadly,welcome to the nuthouse. I could spend en eternity going through treatments et al but it would be far more beneficial to ring our advice line. They are extremely knowledgeable and will take you through everything.

Login to add comments

Share This

© OUCH(uk) 2020 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368