Posted by Simon on April 12, 1999 at 17:08:43:
In Reply to: They will not prescribe O2 posted by mary on April 12, 1999 at 05:12:56:
Dear Mary,
You're not alone. I went through all this about 2
and a half years ago. My GP and neuro both agreed
to try me on O2. When the prescription got to the
family practitioner committee, they refused it.
First they weren't prepared to pay for the high
flow meter system, and second the local health
authority claimed that the side effects of high
use O2 were a potential (though uncertain) problem.
The doctor would be liable, and they were not
prepared to allow him to be in that position.
Ironically, given the way the NHS is usually money-
obsessed, they were quite happy to prescribe Imigran
injections, as many as I needed. (I reckon these
have cost them around £40000 over the last three
years).
I took it to my MP who was very helpful, but had a
similar lack of success. In the end I realised that
as the Imigran worked better than the oxygen anyway,
and they were prepared to pay for it, then I was
probably better-off letting them think that way!
(On the expense side, ask him whether he knows
these things are called suicide headaches. If he's
fund-holding they get help with high expense
patients like us).
The main thing is to make sure that you're getting something
that works. I would follow up the neuro, even if when
you see him you're not in a bout - at least the GP
will have some recommendations on paper the next
time the damned thing returns. Ask the GP if he's
ever had another patient with clusters - though it's
not as easy (or desirable) to change doctors over
here, there may be another in the same practice who
has more experience with it.
Final alternative: contact the Headache Research
Group at the National Hospital for Neruology etc.
in Queen's Square London. They are occasionally
doing research, and if you could be involved you
get bloody good care as a by-product.
Sorry to ramble -get in touch if you need any more info.
Simon