OUCH(UK) Organisation for the Understanding of Cluster Headache


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Neurology upset

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#1 Tue, 10/01/2023 - 18:53
Last seen: 6 months 2 weeks ago
Joined: 12/02/2019 - 12:35

Neurology upset

I was in a local headache clinic which was operated by two local gps helping patients with CH/Migraine issues. Due to funding this clinic had to stop. I received a letter explaining i would be referred to my local hospital/neurologist. After no appointment date given (which i understand re waiting lists...i work in nhs) 

I received a letter from the hospital saying i was referred back to my gp with advice. Today my gp called me saying basically the hospital had refused to see me and said my gp can assist. My gp actually apologised to me for what happened and as she said i probably no more than her. I am currently taking Amitriptylene 70mg per night plus Propanolol 160mg daily.The headaches are still waking me up at night. My gp said she would refer me to another hospital but be prepared for a long wait. 

I am totally shocked how a neurologist can turn someone away with advise when it is in my medical notes going back over 20yrs and seeing Proff Goadsby who diagnosed me. Obviously the neuroligist just thinks its a headache. If i could just give them the headache for a few days i bet the view on headaches would change.

Thank you neurology department for my quality of life you care so much about. 

Angela Bence 

Sun, 15/01/2023 - 14:18
Last seen: 1 hour 45 min ago
Joined: 26/02/2014 - 14:26

Hi Angela,

Please call our Advice Line 0800 669 6824 and leave a message and someone will get back to you.  If Prof Goadsby diagnosed Cluster Headache you are clearly not being treated for it, let's have a chat and we will point you in the right direction.  Sadly GP's tend to lump CH in as Migraine which it is not, not that I want to minimise Migraine as some people have an awful time with it, but CH is different!  Some Neurologists too have a lack of knowledge and understanding.

Make that call and we will get you sorted out!

take care


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