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Cluster Headaches in the day

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#1 Thu, 06/03/2014 - 12:15
DavidH 7
Last seen: 4 months 1 week ago
Joined: 26/02/2014 - 15:13

Cluster Headaches in the day


I get Cluster Headaches on a two year-or-so cycle and have done so for around 20 years, although they haven't always been diagnosed as such.  I'm two weeks into an episode. 

I tend to get my headaches at 0100, at least at the start of an episode.  The pain during the night is managed with Sumatriptan tables (50mg) and Oxygen.  I'm also prescribed Sumatriptan injections but save these until I can't tolerate the pain. 

When the pain is at night, it is managable.  However, in the last two days, I've had pain around midday (this was tolerable and I managed to stay at work, albeit after having had to hide away in a meeting room for 40 minutes) and at 0930 (I came home).

I've considered asking my employers if they can have Oxygen on the premises or alternatively asking a GP local to work (not my own GP) if they could do the same.  This might help if I can adjust my workload for the duration of the headaches.

I've tried steroids and Verapamil in the past (without success).  Any other suggestions?




Thu, 06/03/2014 - 12:39
Colin Allen Vic...
Last seen: 1 day 5 hours ago
Joined: 21/03/2012 - 15:19

David,a call to the helpline (01646 651979) would be advisable.They will take you through the latest medications and treatments.

Cluster headache is a disease listed in the Disability Discrimination Act.Accordingly,your employer is obliged to make reasonable adjustments to your work situation to accomodate the impact of CH during your term of employment.Gerry Tyrrell at Neurosupport on 0151 2983288 will advise you in depth regarding employment issues.

Colin Allen

Vice Chairman

Fri, 07/03/2014 - 17:25
DavidH 7
Last seen: 4 months 1 week ago
Joined: 26/02/2014 - 15:13

Thanks Colin - will phone in.

Any thoughts on why the headaches might be occurring in the day (and at different times), rather than sticking to a more usual "pattern"?

In the past, my headaches have shifted but not usually so quickly from the start of the episode.


Fri, 07/03/2014 - 17:38
Mr Git
Mr Git's picture
Last seen: 5 years 6 months ago
Joined: 26/02/2014 - 14:34

In my experience David, CH is unbelievably complex.  The variables are endless.  One of many possibilities may be that your use of your medications may be affecting things.

The only thing in your control is your management of the condition, and step 1 should always be call the Helpline.  Their knowledge and experience is unrivalled.

I suspect they may recommend step 2, which would be to ensure you are under the care of the right consultant, so I would wait until you have spoken with the Helpline before doing anything else.

Unfortunately, there are no quick fixes with CH, it's a case of getting all the right foundations in place in the first instance.

Sorry I can't be of more help but rest assured you've made the right first move.

Best of luck


Warning: This forum may contain nuts

Sun, 09/03/2014 - 20:09 (Reply to #4)
DavidH 7
Last seen: 4 months 1 week ago
Joined: 26/02/2014 - 15:13

I ran out of oxygen and have been without for the weekend.

Strangely, I've had less headaches (or, at least, less severe headaches).  I used a Sumatriptan injection around midday yesterday and then haven't had full-on agonising pain since (I've had headaches but ones I've been able to manage without medication as opposed to *feel like someone is stabbing my eyes out* levels of pain).

Is this likely to be  a coincidence?

Mon, 10/03/2014 - 18:23 (Reply to #5)
Mike's picture
Last seen: 8 years 11 months ago
Joined: 21/03/2012 - 12:43

Could be a coincedence, might be you're not getting hit by rebounds. There really are no rules.

Chairman OUCH UK

Wed, 19/03/2014 - 22:24
DavidH 7
Last seen: 4 months 1 week ago
Joined: 26/02/2014 - 15:13

Contemplating going "medication-free", although I'm not sure I can manage that.

I suspect that oxygen is just deferring headaches (and so making them more disruptive).  Have used Sumatriptan injections for a few nights but can't sustain this (as I start to feel it on my chest, with repeated use).

Any good strategies?




Wed, 19/03/2014 - 23:34 (Reply to #7)
Brian C
Last seen: 2 years 9 months ago
Joined: 26/02/2014 - 14:35

Hi David7

Have you ever tried the zomig nasel sprays as you are allowed up to 3 a day. I tried various ways but I take O2 in the morning my next attack at work about 11am I would take a spray which would take me through until about 3:30 when I finished school (Teacher not pupil) so I could relax for as long as I needed with my O2 (I can tell you right now you are allowed O2 in your work as long as it is put in a cabinate (Metal) signed O2 and it is in a looked metel contain bolted to against a wall that if there was an explosion the bottle would blow out the way. Unfortunatly my headaches got so bad I had to retire, this is mandetory as you have to consult your H&S officer the local fire briegade will sent someone out to check everything and give you any help you need. My occ/health was excellant and backed me fully you could also go down that line depending how much your headaches interfere wth your work


Thu, 20/03/2014 - 21:55
DavidH 7
Last seen: 4 months 1 week ago
Joined: 26/02/2014 - 15:13

Thanks Brian.  Hadn't thought of nasal sprays.

Just to clarify:  my work are being fine about the idea of having oxygen on site.

Sat, 19/04/2014 - 20:32
DavidH 7
Last seen: 4 months 1 week ago
Joined: 26/02/2014 - 15:13

This has been my weirdest episode of headaches, with pain shifting from night to day (possibly rebounds) and then settling on a pattern of early evening shadows/lightweight pain for weeks and then, just as I thought they'd gone (I'd even gone as far as buying - but not drinking - a bottle of beer, to celebrate), I was hit by a really nasty one at the same time I've been having minor pain.

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