OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

A few things that I find helpful (may not work for you but, hey, what's to lose?)

3 posts / 0 new
Last post
#1 Tue, 18/09/2018 - 16:53
Last seen: 5 years 10 months ago
Joined: 16/02/2015 - 23:00

A few things that I find helpful (may not work for you but, hey, what's to lose?)

I was diagnosed in Munich in May 2008.  It scared the willies out of me when I had my first headache.  I was on my own in a strange city, all my workmates were new to me and I had no easy access to healthcare.  It hurt so much and I was just lying down, waiting to die, or so I thought.  90 minutes later, it was gone of course.  A little research and I went to a clinic in Munich, run by some experts in the field, who diagnosed it PDQ and put me on Verapamil and intranasal Triptan (Zomig).

My headache started as being episodal (May/June and November/December initially).  The specialist said that it was unusual in these particular months but they had noticed other local sufferers had moved over to the same months.  Something to do with weather patterns?  I don't know.

It stayed like this for a few years and then, around 2011, when I was working in Switzerland, it became chronic.  At this point, I was given oxygen and told to use a flow-rate of around 9L/min.  Eventually, I found that 6L/min worked and did not put me to sleep (which I find is a problem with high doses of oxygen) and, of course, going to sleep can be dangerous because the mask can slip off, oxygen fills the room (I know you should alway open a window but you try that in Switzerland in January) and then someone walks in with a lighted cigarette, kaboom.  We banned smoking anywhere near the cylinders, of course but there was still a risk.

Headaches stopped completely in March 2016 but are now back, since late August 2018.  I am now in the UK and do not have access to home oxygen because my womenfolk are frightened of the possibilities (actually, I think they object to the greasy rings on the carpets but that's just me being cynical).

A friend of a friend (now just a friend Smile ) in Switzerland suggested using an ice pack (or a pack of frozen peas wrapped in a tea-towel).  I tried this, pressing the pack over my eye and, of course, it did not work.  In fact, it felt worse.  Why?  Because the cold was encouraging the blood to flow to that area to warm it up. 

Eureka!  Washing-up bowl with some cold water and as many ice cubes as I could find plus the (unopened) pack of frozen peas.  I stood up in it and walked on the spot.  Gradual relief ensued.  Headache completely gone in about 15 minutes, without intranasal Triptan (which makes me hurl, so its effectiveness is dubious). 

So this is now what I do.  As soon as I feel the headache coming on (and my main headache is an "alarm clock" job at 21:00 or thereabouts), I prepare the bowl and make myself a cup of hot, strong coffee (stimulant), light a cigar (stimulant), eat something sweet (stimulant) and sit down with my feet in the bowl.  When the headache comes, I stand up and walk on the spot (stimulates blood flow to leg muscles and away from that bloody nerve).

I have to be careful because I also suffer from Polyneuropathy (general lack of feeling), so my feet can get very cold without me being aware of it.  I stand for a max of 5 minutes and take my feet out and put them on a nice, fluffy towel.  I wait a few mins and put them back in the water, one at a time.  If I saw them go blue then I would stop immediately and wrap them in the towel, warming them very gently.  I do not want to lose my toes to frostbite and I have experienced chillblains before also.

Now, I also get things that "feel" like cluster headaches but probably are not.  I had one in an airplane recently because it was a small plane and it was full of people.  This type are, I believe, oxygen-deprivation headaches and the best remedy is oxygen (which the helpful Swissair cabin staff gave me - headache gone in 5 mins).

I get other types, which I think may be due to caffeine-withdrawal, nicotine-withdrawal, dehydration and/or tiredness (I also only sleep 1-2 hours per night and have been diagnosed with "moderate" sleep apnoea).  These are best dealt with by having a cup of strong coffee, a big cigar, a small bottle of that nice sugar-free flavoured water or a nap.  Maybe all of the above because I cannot tell which type I am dealing with.

All of these headaches are centred behind my left eye, I get the congestion in my left nostril and tearing in the eye.  All of them will respond (for me) to the cold water footbath. 

The "genuine" cluster headache is best dealt with by sitting with my feet in the footbath for some time after the pain has receded or I find that it comes back.  The others are less of a problem, once the missing thing has been consumed.

Another thing that I find helpful, is a nasal spray of the type used for babies and containing only sea water.  This clears my nose and makes my breathing more efficient.  Sometimes it makes me hurl but I have found that being sick (actually coughing up phlegm, in my case) increases the pain for a fraction of a second but then seems to relieve it a little, until it builds up again.

I hope and pray that some of you find some of these things useful.

God bless.


Fri, 12/10/2018 - 09:17
Last seen: 11 hours 42 min ago
Joined: 21/03/2012 - 15:16

Unusual, but glad you have found something that works!  I suffer from chilblains so I don't know it's something I would try, but thanks for the heads up.  As you say, we have nothing to lose but the worst headache in the world!


Fri, 21/12/2018 - 19:52
paul's picture
Last seen: 1 year 4 months ago
Joined: 31/10/2014 - 20:02

aah works for me too winter time i stand on cold concrete, snow or ice cluster goes in minutesyes

Login to add comments

Share This

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