First, you seeing a headache specialist?, or at least someone with some skill/experience?

This is an area of medicine which is too obscure and complex for general docs to be useful.

Since the core issue is that you haven't received a good diagnosis (meds which don't work point in that direction), first step is to get focused on that chore.

Bob Johnson wrote on Feb 2^nd, 2013 at 8:17pm:


Gday Bob,
Ive seen a specialist for the last 3 years and he's very helpful, expensive but at least he's well educated about CH not majority of the GP's around here.
I've just recently changed my meds the reason being that the last ones seemed to become non effected.Also I've only just started using oxygen.
Cheers

AussieBrian wrote on Feb 2^nd, 2013 at 8:23pm:


Gday Brian, thanks so much for the warm welcome my friend. Huge thanks for the info on Batchs diet, im really interested in giving it a go.
When it comes to beer haha I've never noticed it gives me any grief as yet so I'll be hanging on to mine if thats ok. Anyway looks like you drink VB and I drink Extra dry so I think im in front there anyway hahaha
Oxygen is next on my agenda but I have to wait til tomorrow till BOC opens up in town so I can get my first attempt at it but i've read awesome recommendations on it.
Cheers
Brad.

G'day from over the ditch

You've found somewhere where people understand exactly what you're going through as we all get CH or support someone with it. Pleased you're working with a specialist in CH that knows his stuff, so hoping that route does start to make an impact on your CHs soon.

So pleased you've excellent support from your family and especially your wife. Support like that is invaluable.

For preventives it is possible that you've not been on high enough doses. Verapamil is one of the main ones and we tend to need several times what most "normal" (i.e. non-CHers) can tolerate. So it may be worth trying some of these again, but at the same time not jumping between different medications so quickly that they don't get chance to get working.

I'll also second the suggestion about the "123 days pain free" approach as it has helped a lot of people, myself included.

You also seem to be one of the lucky few who can still enjoy a beer, which with the recent weather you've been having on your side of the Tasman is pretty useful. Don't let Brian talk you into sending all of yours his way!

You are using oxygen, hopefully with a non-rebreather mask at a high flow rate of at least 15lpm and if possible higher. I can kill mine off in about 5 min with 25lpm. You'll see an oxygen link on the left which although written referencing US tank sizes, etc., how it is best used works the same.

For getting oxygen from BOC Australia it is fairly straightforward to get an account set up with the main thing you'll need, other than some $, is a letter from a doctor saying that you need medical oxygen. I got an account set up for use in Perth a few years ago and it just took a few phone calls and  a fax to send them the letter. If you're buying your own regulator, go for a 25lpm (or higher) one if possible as it'll let you abort CHs so much quicker. Also ensure you get a non-rebreather mask. Let me know if you need any more info on this.

Now keep reading like mad as you'll learn a LOT and ask all the questions you can think of.

Auckland is pretty good at the minute, having a great summer with just about zero rain (<5mm) until today, when we got enough rain to turn the grass green again.

You'll have lived not that far away with the places you mentioned (going to PM with details).

Pleased my post helps...