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Trigger31
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UK National Health Service
« on: Jul 17th, 2003, 3:01pm » |
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I have had CH for about 6 years now although I was only diagnosed about 3 years ago due to inadequte Doctors claiming I had Migrane and stress etc etc. Finally I was told what I had and presumed that it could be tackled. I have had lots of different pain killers and also steroids which I have stopped taking as the side effects of taking these for probably the rest of my life outway the clusters themselves. Anyway this week my Doctor gave me 2 injections of Imigram to take away and see how I got on with. FANTASTIC the pain cleared within minutes and beleive me I was exstatic as my attacks can last up to 3 hours at 'throwing myself around the room agony'. So when I went back to the doctors today to ask for enough to get me through the next couple of weeks when the episode should end, I was told that it was unsafe to take this wonderdrug on a daily basis. I have done a little research and found no information to back this up. The doctor also told me that she wouldn't prescribe oxygen for the same reason (despite me haveing it several times before) which I thought was really weired also. Has anyone else had this problem. I suspect that the Doctor is refusing to give me more as it costs the NHS £30 per injection, if this is the case, do I have any rights to demand this drug or do I just have to sit back again and beat my head against the wall. I wonder if the medical world would treat us differently if they were given one CH during their training. Any adivce would be appreciated.
Also this site has made me feel so much better. It's great to hear that I am not alone, although I wish none of you had them, I'm glad some people have as it makes me feel better that I'm not alone.
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Tom
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Re: UK National Health Service
« Reply #1 on: Jul 17th, 2003, 4:58pm » |
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Why don't you contact the nice people from
www.clusterheadaches.org.uk
- they really know how CHeads get proper medical help in UK !
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Thomas/Munich
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Hooter
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Re: UK National Health Service
« Reply #2 on: Jul 17th, 2003, 6:32pm » |
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Hi Trig
I am a Uk sufferer too. Welcome to the online cluster world.
Good advice from Tom, and it doesn't mean you aren't welcome here. The UK system and drug names are very different so it is worth being involved with both sites.
I had the same problems you have. Not sure but it seems that there is a cap on GP's precribing Imigran. I can only get 2 at a time as well (shhhss, don't tell, but I am stock piling them)
There is a resistance to prescribing 02 here which I have overcome but only because my neuro told the GP to do it. I suspect it is partly a cost thing again, but also often because the GP doesn't know it as a treatment.
Try taking the education route. Peter's "laymans guide" which you can print off from the UK site was great for helping people e.g. GP's become more knowledgeable.
See my post to Josie about using the UK site, there will be people there who can give you specific UK advice and also local help about your area if you ask there. You may find if your GP is resistant to you using what they perceive as "too much" Imigran , you could convince them that oxygen is a "healthier" alternative. I use quotations here as this is not a medical assessment of either treatment!
As with Josie, message me and I will give you my email if you want to talk.
Hooter
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Simon
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Re: UK National Health Service
« Reply #3 on: Jul 17th, 2003, 7:15pm » |
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Hi Trigger,
Two rules for dealing with GPs in UK.
1. As suggested above, go armed with info - remember very few have seen more than one or two CH patients, and most will not know that with the OUCH groupings we know a thing or two as well! (Be polite though, you know how they are about their professionalism!)
2. Don't believe any sweeping statements they make about what they "can" do. O2 can be prescribed, and there are no limits on Imigran injection prescription - other than bearing in mind the two a day limit they are licensed for. (I went for over five years on two jabs per day, and get them in prescriptions for twenty a time.)
Useful hint - get a prepayment cert - info at OUCH (UK). If doctor doesn't prescribe more than two at a time, just go back every day for another two - soon your scrip will change! 
Simon
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