Hi having found this site I thought I would say hello as I have recently been diagnosed with CH after many years of suffering and being told that it was sinus pain / migraine etc.
Reading through the forums it seems that I am far from the only one to have a lengthy journey to diagnosis, but there is hope that I can start getting my life back and these headaches can actually be managed with treatments that are effective rather than the raft of steroid sprays / painkillers that I have previously been prescribed.
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Submitted by Phil - OUCH UK on Fri, 16/05/2025 - 12:42
PermalinkWelcome to the forum, Mumu.
Welcome to the forum, Mumu. Sorry you have to be here.
The difficulty of getting a correct diagnosis is far too common, but OUCH and our members are raising awareness constantly.
If you haven't already, you should ask your GP for a referral to a Neurologist who specialises in headache disorders, they will explain all your options, like oxygen and sumatriptan injections.
If you give the advice line a call, they'll be able to suggest a Neurologist near you.
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Submitted by MuMu on Sun, 18/05/2025 - 23:02
In reply to Welcome to the forum, Mumu. by Phil - OUCH UK
PermalinkHi Phil,
Hi Phil,
Yes my GP referred me a while ago and the neueologist has now given me the diagnosis along with an oxygen prescription and potentially starting on Verapamil.
I have found that I cannot tolerate sumatriptan as it gives me insomnia, which then makes the attacks worse as disruption to sleep is a trigger for me.
Joined: Sat, 29/08/2026 - 14:36
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Submitted by Phil - OUCH UK on Mon, 19/05/2025 - 00:38
PermalinkNot everyone gets along with
Not everyone gets along with sumatriptan; the nasal sprays can be really uncomfortable, and the injections, well, they're injections.
It seems you are in good hands. High flow oxygen has been a God send to a lot of sufferers, especially with a demand valve instead of a mask.
Hope you can make it to our conference.
Phil