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My treatment

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#1 Mon, 22/03/2021 - 03:09
Dargs
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Last seen: 2 weeks 2 days ago
Joined: 21/03/2021 - 20:45

My treatment

Hi
I've suffered with CCH since 2004 after a neurology referral after my GP didn't know what to do with me.

Diagnosed with chronic clusters was a bit of a shock as it was something I had never heard off.
Started off on amitriptalyne and going through various other drugs for a few years until I got prescribed sodium valporate. The dose was increased every time the effectiveness wore off until I was taking 1800mg a day (recommended I was told maximum 1600mg).

A referral to the Neuro department and I'm now on Verapamil at 560mg a day to if it can control them and also have high flow oxygen on hand as well.

I've been through tablet form and nasal spray triptans which had no effect at all.

My consultant has now advised that next steps would be in patient observation at Bath Neurological department.

Has anyone had this or know anything about it please.

Sorry for the long post.

Thank for reading

Paul (Dargs) Dargan

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