OUCH(UK) Organisation for the Understanding of Cluster Headache


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#1 Mon, 10/11/2014 - 17:43
Last seen: 9 years 4 months ago
Joined: 06/11/2014 - 12:43


Hi, I'm a new member. My doctor has said I need to see a Neurologist to confirm her opinion that I am suffering from CH before she will take things any further with regard to treatment or prevention.

I have health cover that will allow me to see any neurologist I choose as long as they also work on the NHS. 

Can anyone recommend someone in my area that specialises in CH as obviously this would make sense?

My postcode is MK19 and I am close to Milton Keynes.

Many thanks, Richard

Mon, 10/11/2014 - 22:26
Last seen: 11 hours 36 min ago
Joined: 21/03/2012 - 15:16

Hi Richard

Your best bet would be to ask to see Dr Giorgio Lambru at St Thomas' hospital in London, it'll be worth the trip.  In the meantime refer your GP to the BNF [ British National Formulary - GPs prescribing bible], to the section on CH, it lists there that subcutaneous sumatriptan [Imigran injections] and high flow oxygen are the first line abortives for CH and that verapamil is suggested as a preventive, you could at least have those treatments until you see the neuro.  To get the oxygen go to the Resources section of the website and under downloads find the HOOF form, which is part completed ready for a CH sufferer.  Download it and take it to your GP, all they have to do is put in the surgery details and your details and the surgery then faxes it off to the oxygen supply company.  The oxygen supplier then telephones you direct to arrange delivery.

Good luck and let us know how you get on.

Val. :)

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