OUCH(UK) Organisation for the Understanding of Cluster Headache


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Hi from a newbie

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#1 Mon, 10/11/2014 - 17:44
Last seen: 9 years 6 months ago
Joined: 10/11/2014 - 17:20

Hi from a newbie

Hi all,

Just joined and although I am new to this site, I am no stranger to cluster headaches. 

I had my first cluster headache at the age of 15, I am now 29 and have spent the last 14 years pretty much alone with the condition as nobody can fully appreciate how painful and disruptive CH's can be. I have been on Propanalol hydrochloride (160mg) since diagnosis soon after my first headache and have tried several abortives such as sumatriptan and diclofenac but they don't seem to work once a headache has set in. I have assumed that the Propanalol has reduced the frequency/intensity of the CH, although I can't know this for sure.

I am happily married and have been in 'remission' for the last 6-7 years; coincidentally my last bout was around 6 months before I met my wife, so she has yet to experience me at my worst.

My clusters have generally set in around October-Dec in the past and during my cluster free period, I have occasionally had 'shadows' (I think that's what you guys call them?) where it feels like a headache is coming on but fortunately fades away. 

However, in the  last 2 weeks these shadows have become more frequent up until this morning where I had my first real cluster headache in many years. It lasted only 40 minutes and wasn't the worst I've ever had but it did put me back into bed so I ended up starting work an hour late! I have had a tingle on and off all day and I am now just awaiting the return of the CH later on tonight or tomorrow morning - fingers crossed it won't happen.

I have joined here in the hope that I can change the way I manage the headaches and find out how other sufferers manage their jobs/normal life during a cluster. 

I'll stop my already too long introduction here and post more (to get it off my chest) in the coming days. I look forward to the advice and support that I am sure  I will find here.



Mon, 10/11/2014 - 22:21
Last seen: 11 min 26 sec ago
Joined: 21/03/2012 - 15:16

Hi Dan

And a warm welcome.  Firstly the propranalol and diclofenac will do nothing for CH.  The sumatriptan needs to be the subcutaneous [injectible] form, the tablets won't touch CH.  You can also ask your GP for oxygen.  If you go to the Resources page of the main website, under downloads you'll find two documents:  New to CH which is advice and suggestions on what to ask your GP for, getting a neuro referral etc.  The second is the HOOF form which is part completed ready for a CH patient.  the info in 'New to CH' will tell you how to get the form completed with your GP.  So have a good read and if you have questions or queries, you can either fire away on here, or you can call our helpline and talk to one of our volunteers, all of whom are sufferers or supporters of sufferers, so will understand what you are going through.


Wed, 12/11/2014 - 09:34 (Reply to #2)
Last seen: 9 years 6 months ago
Joined: 10/11/2014 - 17:20

Thank you very much Val. I will be seeing my GP on Friday and will look at all of the info you mentioned in the meantime. :)

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