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No Progress with GP to change medication

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#1 Tue, 24/11/2020 - 11:23
Last seen: 3 years 4 months ago
Joined: 19/11/2020 - 16:41

No Progress with GP to change medication

Hi all

I am new to OUCH and the forum. Diagnosed with ECH since 2013 following an MRI which was all clrear, although suffered with it since 2003. Have always been prescribed amitriptyline and sumatriptan for each cluster since. Being none the wiser, i've just let it take its course. Only this time around my attackes lasting longer and having 4 a day. The desperation led me to research and i came across OUCH. It is on here i could see there are alternative medications which would significantly reduce the time of each attack (currently average 46 mins each attack).

Have been on to GP's to change my meds to nasal spray, injections or oxygen. They are diggin their heels in for no apparent reason. The last call i had they took the default position and said they will refer me to neurologist again. That will take a while leaving me to endure this pain for longer than i need to.

Reaching out to those who have been through the same process and pains in the past. Do i percevere with GP and wait for referral? Or do i change GP? Are there other avenues i could explore to get the meds i need? Any tips/recomemndations welcome.

By the way, just want to say for all those suffering with CCH, my thoughts are with you all. Whilst ECH is painful, knowing there is respite from it around the corner gives us hope. I dread to think what you guys go throgh day in day out.

Appreciate your time reading this 

S Tai

Thu, 10/12/2020 - 15:44
Last seen: 2 years 7 months ago
Joined: 10/12/2020 - 12:29

Hi tazier I feel for you honestly I have cch and to begin with my gp was hopeless I had the usual painkillers etc etc it sounds like a migraine and low and behold I managed to convince them to refer me to a neurologist and after an mri I was diagnosed with cch.. the sumatriptan injections and nasal spray I personally had a bad reaction to this gp did not help at all with this but my neurologist was amazing he signed me up for at home oxygen treatment.

Personally I would try get in contact with a neurologist and see what options you have as in my findings most gps really don't understand what this condition is however a neurologist knows how debilitating this can be.

Michael Gibson

Sun, 20/12/2020 - 11:19
Last seen: 1 week 4 days ago
Joined: 21/03/2012 - 15:16

Hi Taizer, I'm a bit late to the game on this one, but if you haven't yet got your GP sorted out re: prescribing, read this:https://ouchuk.org/basics   it is on the OUCH website along with lots of other helpful info and downloads.  The basics document details how to get the correct meds prescribed by your GP and we have the forms in downloads for oxygen for your GP to prescribe it for you.  

Hope you get sorted out quickly.


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