OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

overseas +44 1646 651 979


6 posts / 0 new
Last post
#1 Fri, 17/04/2015 - 22:14
DavidH 7
Last seen: 1 week 11 hours ago
Joined: 26/02/2014 - 15:13


I experience Cluster Headaches every other year.  My last bout was in late-March/April 2014.  Inbetween, I experience "shadows" and this year they have seemed quite pronounced.  More or less to the week of my last episode I've experienced (relatively) mild pain in the same place as my usual Cluster Headaches but at a level I'd suggest was "3/10" instead of "9/10" - annoying rather than agony.  I wonder how others treat their shadows?  Do you use your usual medication or does the pain seem so slight in comparison that you go without?  Is there a recommended course of treatment?

Sat, 18/04/2015 - 09:38
Last seen: 4 years 10 months ago
Joined: 26/02/2014 - 14:54

I just have to ride them out but they can last ages, sometimes a strong black coffee or hot chilli/mustard dish can help snap out of them but only abut 25% sucess rate with me.

brusing teeth with an electric toothbrush strangly helps sometimes too. As does answering a phone call or a stressful event you have to deal with, trouble is when you calm down a cluster hits.

Mon, 20/11/2017 - 22:07
DavidH 7
Last seen: 1 week 11 hours ago
Joined: 26/02/2014 - 15:13

Hmm.  I've had neck/shoulder pain with has progressed to a kind of "near-migraine".  I'd have said this wasn't related to my Cluster Headaches (I'm not due them) but I've been getting very mild pain in the same place as when I have Cluster pain ...

Thu, 30/11/2017 - 13:07
Last seen: 1 year 7 months ago
Joined: 26/02/2014 - 14:04

As somebody for whom shadows have become the norm over the past 15 - 20 years, I've always ridden them out.  Caffeine can help.  Exercise can help or make them worse.  I have bouts of shadows.  They often improve if I take a break from work when I have them.

The question of "what shadows are" was raised at the recent headache meeting at KC in London.  I was thinking about writing my own description of shadows to submit to the headache team to see how it compares with other sufferers.  The terms is so frequently used but they admit to knowing very little about what they actually are.  I guess if you don't have them yourself, how can you imagine them.

Sat, 24/02/2018 - 13:04
Last seen: 1 year 6 months ago
Joined: 27/05/2017 - 17:40

Around an ECH cluster I get these "shadows" at night. I find that going into a brightly lit room and reading shuts them down quite often.

As CH is hypothalamus driven, could a reaction to light on the circadian rythm have anything to do with this?

Anyone else tried this?

I developed ECH at age 71 after a career of working for a few days at a time after travelling through many time zones,

UK to USA, Europe, Asia, Brazil, Australia etc. and long overnight flights. Could this be a cause of my late-onset ECH?

Mon, 05/03/2018 - 09:09
Last seen: 20 hours 52 min ago
Joined: 21/03/2012 - 15:16

Interesting questions, and something I think only a headache consultant could answer.  I don't know if you are able to travel but you might like to consider coming to the North East meeting or a future OUCH meeting at a venue closer to you where, amongst other things, you get to ask a question of a world authority on the subject of CH.  Some of our members have volunteered for research at the Surrey University sleep research centre into the effects of light and time and environmental changes, jetlag etc, on CH sufferers.  The study is now finished, but occasionally one of the researchers is present at our meetings and could perhaps answer your questions.  I do know from personal experience, that being in the southern hemisphere reduces my CH markedly, although still chronic and I put this down to the light levels being higher.  However, by accepting that we condemn all of us resident in the norther hemisphere to a pretty gloomy  outlook for CH.  That then leads on to the question could a 'sunlight' lamp such as those used in SAD help us?  And there are of course some sufferers whose CH does not react well to bright light.  As usual, no pat answer where CH is concerned - closest thing to a designer disease, no two sufferers experience is identical, save for the common factor of the excruciating pain.  If you would like your question asked on your behalf at the next meeting, e-mail meetings@ouchuk. org with your request and we can let you know the answer.


Login to add comments

Share This

© OUCH(uk) 2021 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368