OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

Coping with CH and work

5 posts / 0 new
Last post
#1 Tue, 12/08/2014 - 13:36
HelenWD's picture
Last seen: 9 years 6 months ago
Joined: 12/08/2014 - 11:18

Coping with CH and work

I was wondering what everyone's experiences are with clusters and working.

I'm currently working full time (9-5.30 Mon-Friday) while trying to cope with CCH. I have always had problems relating to health most of my life and have managed to achieve a really awesome job throughout all of it, which I really want to prove to myself that I am worth something, and capable of my job.


I don't know if anyone feels the same, but I do not want to let my clusters take control of my life and job, so I preserver and push through my attacks and try to work as much as I can.

I don't like talking about it to other people outside of my home life, as they're usually like oh just take this, or you should try this etc. I know they're only trying to help but it often makes me feel worse. They do not understand that although it has "headache" in the name, that doesn't mean it is anything like migraines etc.


My boss knows about my attacks, but with job security in the company I work for and I only joined last April I'm always on the edge of my toes when I don't want to let them know that my clusters have affected me on so and so day etc. My preventative meds stop me being able to form sentences properly sometimes, or I forget this and that. I also find nervous situations I forget words, making me look really dumb or stupid.


What's everyone's experiences and how have you overcome tough situations as such? 


Tue, 12/08/2014 - 14:13
Last seen: 9 years 6 months ago
Joined: 26/02/2014 - 15:05

Helen, I sympathise completely. I work in a health environment and to be honest most people are ok and my occupational health dept have been amazing. BUT I am my own worst enemy! I can't bare the thought of being at home and having nothing to think about except these bloody headaches, so I keep going to work..... But every now and then, when I have a bit of respite time from them, it's then that I realise... I don't think I'm fit for work when I'm really struggling with it.... But then they start again and hay ho, I'm back in my push through it routine!!!


Tue, 12/08/2014 - 14:59
Last seen: 8 years 2 weeks ago
Joined: 26/02/2014 - 14:54

At first everyone at work is helpful, but as time goes on and you become unreliable due to clusters attacking your workload builds up, appiontments/meetings/deadlines missed or other have to cover. Eventually patience wears thin and your called in for a chat.


A lot depends on your type of work and how flexable things can be. Most big employers have occupational help or at least a personell dept. Remember in the work place clusters are classed as a disability.


Thu, 14/08/2014 - 19:57
Last seen: 12 hours 53 min ago
Joined: 21/03/2012 - 15:16

Hi Helen

Did you know first of all that CH is a disability, Employment Tribunal Law says so in the case of Hood v London Casinos Management and that applies to episodic sufferers.  As such your employers have to make 'reasonable adjustments' so that you are able to carry out your work, that might mean flexible hours, or a room for you to go to to treat your attacks etc. etc.  I would suggest you contact www.neurosupport.org.uk for further advice on your rights under the DDA (Disability Discrimination Act) with regard to CH, Neurosupport know all about CH and have advised several members.


Tue, 16/06/2015 - 14:36
Trevor Broome
Trevor Broome's picture
Last seen: 8 years 5 months ago
Joined: 26/05/2015 - 00:38

Hi, I am not yet sure if I have Sunct/Suna or CH, going by the lenght of the pain and frequency its most likely Sunct/Suna, I get attacts the same time every night when in a period which thankfully I am not. Its usually around 2:30am at the start and then every 30 minutes or so. Each lasting upto 3 to 5 minutes, It was hard to time as I just climbing the walls each time. If I get more attacks I will time them if I can. When I see a Neuro I hope he can confirm the condition. The crux of what I am asking is if Suna/Sunct is also covered under DDA rules? The last period I had was 3.5 months and I barely got more than 2 hours sleep at a time and was exhaused everyday but contintued to work. Looking back I probably should have gone sick but until I joined OUCH I was sure it would have led to me potentially losing my job.  Is this covered under DDA or not?  I also have Migraines 3 or 4 times a year and Sinus pain with weather changes which is an anoyance next to SUNA/CH.


Thanks for any advice.

Login to add comments

Share This

© OUCH(uk) 2024 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368