OUCH(UK) Organisation for the Understanding of Cluster Headache

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Undiagnosed

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#1 Fri, 15/04/2022 - 21:03
Somehope23
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Last seen: 5 months 2 weeks ago
Joined: 16/04/2021 - 15:18

Undiagnosed

Hello all,

I've been a member on here on and off for a few years and a CH sufferer for around 20 years or so.

I am now in my 50s and thankfully haven't suffered a cycle for around 8 years...always spooked though, especially this time of year when the light changes as this was always my time around April-July.

When I first went to my GP around 20 years ago I had to explain everything at the time...it seemed I knew more about the condition than he did. I had the usual migraine treatment suggestions, followed these, tests etc...eventually it was accepted I had CH and I was prescibed Sumatriptan etc. On one of my last cycles I was given some oxygen at the hospital I was working at and this helped enormously when I had an attack.

My issue now is the GP has changed and I've lately found out I was never officially diagnosed! Equally, they can find no record of prescriptions etc so I can't be precribed oxygen. Interestingly, they will prescribe sumatriptan.

Not quite sure what to do...I know the path to diagnosis is a long one some times.

Thank you all.

Wed, 27/04/2022 - 10:58
ElizabethK
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Last seen: 2 days 6 hours ago
Joined: 26/02/2014 - 14:26

Hi,

Your GP needs to refer you to a Neurologist who is a Headache Specialist.  He also needs to look at the NICE (National Institute for Clinical Excellence) Guidelines for the treatment of CH.  This is reflected in our "Basics" document (link in treatments) which sets out what needs to be done.

It might be helpful for you to to either call the Advice Line 08006696824 or email adviceline@ouchuk.org and we can recommend a Neurologist who is a Headache Specilaist for your GP to refer you to.  Currently everyone who works on the Advice Line is a sufferer and understands what you go through, but can point you in the right direction.

take care

Liz

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