OUCH(UK) Organisation for the Understanding of Cluster Headache


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New Member

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#1 Wed, 22/07/2015 - 20:59
Last seen: 8 years 2 months ago
Joined: 22/07/2015 - 18:56

New Member

Hi Everyone

Joined today.  I was diagnosed officially with chronic cluster headaches this year, though took 4 long years to get it.

I have reacted badly to most drug therapies, because I have the complications of Lupus and Hughes Syndrome to add to my co-morbidities.

I am in week 25 now with no respite from clusters, ranging from one to two a day up to at its worst, 20 bouts, usually all taking place during the night.

Currently managing my bouts with Sumatriptan and O2, but these are only useful if I catch them early enough.

Glad to have found you all.


Thu, 23/07/2015 - 00:06
Last seen: 8 years 6 days ago
Joined: 17/04/2015 - 23:39

Hi and welcome

Tue, 28/07/2015 - 14:43
CBailey's picture
Last seen: 6 years 8 months ago
Joined: 26/02/2014 - 15:13

Welcome. Sorry you've been hit with so many complicated illnesses. Are you under the care of a specialist neurologist? Have you nerve blocks, or perhaps a steroid taper? I understand you may already be on steroids for the Lupus.

Arise and be all that you dreamed.

Wed, 29/07/2015 - 22:01 (Reply to #3)
Last seen: 8 years 2 months ago
Joined: 22/07/2015 - 18:56

Thank you for the welcome.

Chloe, yes I have had a steroid taper, but due to bone deficiency these had to be halted, but could be reinstated but I am extremely wary of doing so.

Nerve blocks were discussed, but as my Lupus is currently somewhat unstable, this is something that is on hold until my Neurologist communicates with my Rheumatologist.

I am a somewhat difficult patient to manage, particularly in relation to my bad reactions to drugs, I guess caution is warranted.


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