how do we start getting people that suffer from migrainous neuralgia (c.h) supplied with medical I.D cards....in my opinion the benefits are ten fold the main one being those that do not have and can not get O2 at home have to go to the hospital for O2 therapy treatment .now its my understanding that c.h brings with it one of the worst known pains known to mankind....now i feel with medical id cards we can get treatment alot faster to us/those that need it ..and save time and pain going through the same old rigmaroles at hospital waiting, taking of bloods etc etc the list goes on ...
what can we do to get this condition made aware to those that need to know to help us in our darkest of hours?
what would be the first steps to take?
and ideas?
here is a link to what i am talking about ....after you click on the link ask yourself do you think it would be of benefit..?
any ideas what steps we can take or what we need to do...together we can have our voices heard ...!!!!


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The problem with the card linked is that since everything is printed on the card and you only get two updates, it'll be painful keeping it up to date, especially for episodic people as drugs and doses change frequently. For example, out of cycle you may be on nothing, then start a prednisione taper and say verapamil, ramping up the dose to an effective dose and then ramping down as the cycle ends. There will also me no information about what abortives a person may have taken, especially triptans.

Because of this pattern a doctor would still need to confirm the information, which almost defeats the point, especially as the medical details are as provided by the patient and not from a doctor.

Ideally if you've oxygen available then this would avoid the need to go to hospital as even if you live next door to the hospital, by the time you've got there the CH will have taken hold.

I suspect that cards like this are much more useful for patients with a long term, stable condition where they take the same medication for months on end.

The card could be improved, however it would not be cheap. The card could be a link to a call centre / secure web site which holds full medical records, verified by doctors. There would need to be a secure process to identify both the medical person calling and the patient to ensure privacy. And the data would need to be frequently updated.

What would work much better is centralised medical records, all stored electronically...

yeah i see your point ...i was thinking mire in the sense of just getting O2 therapy as a last line of defence ....if you havent or cant get O2 at home ...as there have been times when i get to level 10 and the pain is unwordy in thought and language......so i go to the hospital for O2 .....i suppose every little helps in a sense but even if it helped a handful of us numb the pain when all else fails ...i feel its worth us looking into and having this discussion ....thought i definitely see where you are coming from..

Seems like there's a simple fix: Write it on a piece of paper and carry it in your wallet. Have a health care provider read it if you're in no position to explain.

maybe im not explaining my point the way i intend to ...example i went to the hospital with level 10 pain ...they disbelieved well i got the impression they had no idea what c.h is/was...other times they take my bloods for no apparent reason/...they have had me waiting in A+E instead of giving me the O2 i so desperately needed...i told them my condition and what i needed and there attitude and i quote we have to deal with those that need help the most first .....now if someone is on deaths doors i understand but that wasnt the case ...did they see it as drug seeking behaviour..? i dont know ...but i feel with medical I.D cards we can bypass all the inadequacies of not getting the treatment when in desperate need

Honestly, I'm not sure why an ED wouldn't give you an oxygen mask if you asked for it. Oxygen isn't a narcotic or something for which drug seekers would be looking. From personal experience, the oxygen you get in hospitals will be delivered at 10 LPM, which, at least for me, is ineffective in knocking back the headaches. Maybe you could talk to your doctor and get he or she to write a paragraph describing why oxygen is used, and you could keep that with you in the event you needed to go to the hospital.
I also don't see why you couldn't just make one of these yourself with an hour or so on microsoft word and a printer.

Good luck,
Isaac