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Sufferers in the UK (Read 5896 times)
debbi.T
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kingston, surrey, UK
Gender: female
Re: Sufferers in the UK
Reply #25 - Apr 21st, 2011 at 3:15am
 
H i there. Im from the UK and had my first CH about 5 years ago. was told by my gp it was a migraine so was given migraleve. dont remember if that worked but havent had a CH until 2 weeks ago when they started. thought it was a migraine, then saw the doc whosaid they are CHs. altho the last few nights havent been as bad as they were i am hoping im coming to the end of my cycle. all the rocking and pacing and pullin my haor and lack of sleep is really taking its toll. just want this beast to go away and die. even when my gp said i have CHs she didnt give me any info on it. i dont think they know much tbh
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chopmyheadoff
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Its only a headache, deal
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Re: Sufferers in the UK
Reply #26 - Apr 26th, 2011 at 6:20am
 
Hi Mate,

Its good that your GP is at least going down the triptan route.
Nasal sprays are no good for ch as they can take 15 mins to kick in.
you need the injections -

Tell your GP to look in his BNF, its a green book that will be sat on his desk and is the doctors "prescription bible".

The ONLY listed treatment for CH is SUMITRIPTAN INJECTIONS.
He really cant refuse you them once he has read this ..

if your any where near liverpool or manchester area then ask to be referred to DR N.Silver .
He is a consultant neurologist who specialises in CH and works closely with proffessor goadsby who is the leading authority on CH.

If he sees the words cluster headache on a doctors referral then he will see you within 2 weeks. this man understands our pain !!

Hope this helps a bit- its a pain in the @ss getting the right support but once you have it things are a bit easier.

you will probly find a bit of resistance from your gp surgery when you come back with a prescription for 10 boxes of imigran, because thats about £1500 worth .. and i have that weekly lol ..

I was once told that i was blowing their prescription budget out of the water. . . but a quick call to DR Silver, and a resulting call from him to my GP soon put them in their place and now they give me what i want , when i want it  Grin

best wishes, let me know if i can help more

chops
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37-41withrestrictions
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NOT SO PF AT THE MOMENT


Posts: 124
Chester UK
Gender: female
Re: Sufferers in the UK
Reply #27 - Apr 27th, 2011 at 4:15am
 
Hi
I have finally received my sumatriptan injections after a right mither... but at least I now have the jab, my next battle is for O2 and I will win it this time!!!
O2 was mentioned at my last neuro apt in the same breath as "well it is expensive" !
I am far more educated in the treatments appropriate for this debilitating condition and will be stating my case for O2!!!
Take care
Suzie
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