Hopefully this will be useful for anyone in New Zealand who is wanting to get oxygen to abort their cluster headaches (that should be enough words to help people using Google...)

First off, this process has been painfully slow, but I've finally got medical oxygen at home.

Your neurologist will want you to try preventatives first and then Maxalt Melt for an abortive. For me the preventatives work pretty well but the Maxalt gave me heart palpitations so I was left with no effective abortive other than Red Bull, which although it helps reduce the intensity and duration of the CH it isn't a silver bullet.

To start to get oxygen, you need to get a referral from your neurologist to the respiratory department for your local hospital. They will put this request on file and almost certainly put the request at a priority of 5, which means the request is rated so low that you will not even be on the waiting list. Instead you are essentially transferred back to your GP for care.

That process alone took me a couple of months. I was fairly patient during this, partly from verapamil doing a great job as a preventive and the CHs I was getting were pretty low Kip values.

I found out that my oxygen request effectively was not going anywhere the morning after a Kip 8 and that night I had a Kip 10 that had me in total agony for just under an hour. This was just too much for me to cope with knowing that oxygen wasn't going to happen.

The next morning I went to see my GP, getting the next available appointment 20 minutes later. I explained how I was at the limit of what I could cope with and asked what I could possibly do to abort the attacks. I gave the suggestion of banging my head against a wall until I knocked myself out. My GP was wonderful. She rang the on call respiratory consultant and got me admitted for a respiratory test as they want to make sure that oxygen really does work for my CHs. Luckily (it seems crazy to write that word) the beast arrived a few hours later and I got my chance to see what happens.

I couldn't believe how effective oxygen really is. What was starting as another Kip 9 or 10 was reduced to nothing in well under 10 minutes. And that was at only 10 litres/min and a re-breather mask (they were still looking for a non-rebreather one despite me saying it was needed).

I'd read about how wonderful oxygen was here, but I really must say that people don't say how utterly amazingly unbelievably wonderfully amazing it is. If I could add another 100 adjectives it wouldn't explain how much difference it made.

So having got as far as showing it works for me, oxygen can not be supplied for people with CHs under the oxygen home use criteria. But they can write a letter saying that oxygen has been shown to be effective and this can be used to obtain medical oxygen from a commercial supplier. You've to pay for it as it isn't available on prescription, but having experienced what it can do I'd pay for it with a kidney or my right arm.

Here in Auckland I was was told that BOC was the only supplier, their web site is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Before you can get oxygen cylinders you must get an account created, which normally takes at least 24 hours. However if you explain that it's urgent it can be done a LOT quicker, as I found out when I was able to get there 30 minutes before they closed on a Friday afternoon (Penrose, Auckland branch).

I've now got my oxygen, with a non-rebreather mask and a 25litre/min regulator.

I'm almost wanting the beast to come again, just so I can chase him away in a few minutes showing that his power over me has taken a HUGE step backwards.

Whilst at the hospital I did my best to educate some of the staff who seemed to be more than just clueless about CHs. One doctor insisted that CHs had nothing to do with the hypothalamus and were all caused by neck injuries. He didn't seem too impressed when I explained, in front of his students, that medical research didn't quite back him up on that, but he was too busy to listen more and was off to see his next patient.

However the best reaction was when talking to a nurse:

Quote:


I didn't quite know what to say to this as the only people weaned off oxygen will be in the mortuary.

Anyway, back to oxygen and funding. The current criteria for funded home oxygen use is that the patient needs to have a severe breathing problem, so a "mere" headache does not qualify. My next step is to challenge this based not just on the scientific evidence but also on the economic benefit as oxygen is cheaper than maxalt / imitrix. But this might take a bit more time to get changed, in the mean time I'm more than happy to have oxygen.

DennisM1045 wrote on Oct 1^st, 2010 at 7:14am:


Some have, especially ones I've talked to and supplied copies of medical studies that I've obtained from here (thanks again Bob).

I just hope that I can help to break this reluctance for people to have oxygen.

I'm now even more confused.

I've just received a letter from the respiratory service at the local hospital about the request from my neurologist for me to be able to use oxygen to abort my cluster headaches. This is despite being told that the guidelines for supply of oxygen specifically exclude using it to abort cluster headaches.

I wonder if the fact that I've been in contact with a Member of Parliment and the Ministry of Health had anything to do with this sudden change?

The doctor who wrote the letter seems to be confused as to if I have cluster migraines or cluster headaches plus thinks that supplemental oxygen will help abort cluster headaches.

It seems that I'll be needing to educate a few more people, but at least my quest to make oxygen available to people with cluster headaches in New Zealand in moving in the right direction.

At least I've secured my own medical oxygen supply, as per my previous posts, so I'm not still doing the 45-75 minute dance I used to go through.

An excellent idea Jerry!

However I've already got one with another on the way. There is no way you'll get me taking you up on your offer as it works just great.

KUDOS MIke,way to go!!!!!!!

Sooooooooooo glad 02 works for you. Im getting my regulator and mask in the next couple days,already have my 02. Like you said I ALMOST want to see the beast so I can kick Butt. Been pretty much PF for a nonth and a half,but I'll be ready if there is a next time.

Oh Joe,thanks for the PM's and info..

For oxygen it very much depends on which DHB (District Health Board) you're in. For where I live I'm in the CMDHB (Counties Manukau) and the requirements are that your GP has to get a neurologist to write a referall to the respiratory department at Middlemore.

It's crazy that perhaps 30km distance means the process is totally different.

BOC have been pretty good, especially at the Penrose branch when I opened the account in a few minutes at 4.30pm on a Friday afternoon.

Do you know if you can do the same order process with BOC for the other side of the ditch?

Hi Mike
Sounds like NZ is much like Oz.

Below are some hints that may work in NZ as well & a link to a piece I wrote back in 2004
Depending on state regulations in Oz you can get Medical oxygen from BOC gasses simply by opening an account with them.

Before I got CH I had an account for welding gasses & beer gas, back then it took about a week to 10 days for the account to come through but once you have the account there aren’t any problems.
Locally here my BOC provider organised a 20% discount on Medical o2 for me which is a great help on the pocket; also depending on your personal medical insurance you may be able to claim a rebate, I am insured with HBF of WA who pay half the cost of the gas & cylinder rental up to a max of $600/year but I have a high level of cover.

A simple Email to your insurance firm asking the question is all it takes if they are on the ball, if it's not covered it's worth asking if by taking out another level of cover will it accommodate your oxygen requirements.


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Note: some of the regulators may have been updated since I first wrote the Mushys piece but the basics are still the same.


Cheers
Barry

onya mike,
Don't know if it's applicable in NZ but over here on the BIG island, BOC run a subsiduary called Oxycare.  I can recommend them to all and sundry.  They simply require a letter from your GP faxed to them, create an account and boom...the O2 is delivered the next day with reg, mask trolly, the lot.  Getting low on O2....a call the day before and the O2 is delivered the next day.  Fantastic service.  For those who need it their number is toll free 1800050999.  Check the web and see if they service NZ.

Good luck to ya bro 

Hi mike, on returning to nz to live i went to see a neuro in hamilton. (I dont think he thinks cluster headaches exist) so after a very heated decussion i demanded oxygen, payed him $350 and left the building. To my surprise the paper work turned up for me to pick up my o2. I didnt have to have to open an account my self, its all paid for by waikato health. At BOC they gave me a D cylinder for home and A for the car.In cycle at the moment back for re fulls every second or third day. I love my o2

Hi Mike, i brought a 15lmp regulator which i have in the car and wdhb gave me  a 25lmp. i quite like 15lmp but might try 25lmp again. Got no preventive, the nuro put me on propranolo which is a beta blocker, didnt do a thing so after 12month i went off it. When i went to see the nuro i was fully armed with a list of preventives i wanted to try but he just larthed at me. Is it possible to get a good preventive from my GP or do i need to find a new nuro.  What do you take? He did give me access to maxalt melt which gets me out of trouble to a certain extent when i get court out with no access to o2.

Thanks Mike.  What sort of side effects do you get from Verapamil?    [Stupid question]  Do you take it all year long, or just when you are in cycle to prevent it?

Hi guys,

I actually read this post before trying to contact someone from the board.  I did attempt to follow the guidelines with my gp but I don't think I got through to him. 

I've posted another thread under the "get to know you" section, but also received a reply from Mike.  I think the cost of the oxygen is actually quite affordable, but the cost of medical care goes $200 a pop.  I'm on a private medical insurance but had CHs since I was 15 so they are a pre-existing condition, aka, I have to front the bill for anything related to CH/CFS.  I'm willing to try anything to get these under control, but I'm hoping that I can get to see a doc without being passed around like a loaf of bread...

That said, If anyone has a suggestion about a doctor who will just jump right in and do the respiratory check... I'd really appreciate it. 

I've gone through nearly every test known to man and I have been left with two possible conditions.  The first, obviously the one that my docs in the states labeled me was Ch/CFS.  The other is a much more scary condition that involves my heart.  Lets just say I'm hoping the oxygen solves the problem.


Zen

Hi Jason my doctor wasn't allowed to give me o2 but he did set me up to see a nuro. He reluctantly order the o2 for me, it took about 2months to come through,was out of cycle by then. it sat in the wardrobe till next cycle. man what a God send, now i Carry one in the car as well.waikato health pays for it ,i just swap tanks at BOC gas. I cant see why you cant make an appointment to see a nuro with out a referral from your doctor. all the best Darren