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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

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:

Oxygen is a drug, we really try hard to wean our patients off this as soon as we can

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.

Way to go Mike  8-)

Sorry you had to go through all this.  So happy O2 works for you. 

Don't physicians in NZ read the medical studies?  I'm amazed that this is a question at all. 

-Dennis-

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

Don't physicians in NZ read the medical studies?  I'm amazed that this is a question at all.

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.

Note to moderators - I did consider posting this info in the "Funnies and Jokes" section but sadly it is for real.

I've now found out why people with CHs in New Zealand don't get oxygen as I've found the document that governs what can be treated with home oxygen.

The part of interest is on page 7:


Quote:

International guidelines do not support the use of home oxygen therapy for symptomatic treatment of cluster headaches in either adults or children, although there is evidence of benefit in occasional patients.  However since the use is so occasional and for such a limited time, it can be rented by patients at low cost from suppliers, and thus is not covered in this service specification.

Can anyone spot anything wrong in the above section?

When I read it I didn't know if I should laugh or cry or both.

My next mission is to get this info corrected so that people here in NZ with CHs don't suffer unduly.

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.

Way to go Mike!  Stay with it my friend!

If I may make a suggestion, go the the CH.com store button in yellow on the left and order an O2ptimask.  If you think you can abort in a hurry with the little mask just wait until you try a mask with a 3 liter bag (I still suck it flat) and a mask that fits your face.  If you don't like it mail it to me and I'll refund your money.  (I've offered that a couple of other times.  Haven't bought one back yet!  Got a couple thank you's though.)

Jerry

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.

Mike, I'm so happy for you- good job! Blaze that path for others too, my friend. You are doing good work.

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..

Mike, sorry to hear you had such a bad experience. Before we went to a specialist, our GP gave us a prescription to get oxygen no problems at all after we showed him some information from this site.

We initially used Nitrogenix to source the O2 - but they were difficult to deal with so swapped - like you, to BOC. They're great, much cheaper - and also have a branch on the North Shore.
They also have branches around the country so if you're travelling and don't want to face the hassle of trying to get a tank on the plane - you can just pre-order on via telephone and "voila" they will even deliver.

Maybe you need a new GP?

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?

Oh that sucks.....DHB's!

Yes, you can definately use BOC in the Sth Island. Just find a branch and call them and they'll charge it to your account.

If anyone else from NZ reads this and needs oxygen - get in contact with us and we'll give you the name of the Doctor and Medical Centre you should try.

All the best.

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.


START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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

Currently I've got two different oxygen setups:

• From the hospital I've a D sized cylinder (29Kg in weight), provided with nose cannulas and a 15lpm regulator. The hospital pays for the cylinder refils.
  
• From a personal account set up with BOC I've an A cylinder (9Kg) and a 25lpm regulator. I've also got two of the optimasks from the ch.com store. I pay for the cylinder refils.
  

The hospital expected me to be able to carry the 29Kg (D) cylinder around when I go to work, etc, which is hardly practical.

So what I've done is to use the equipment to give me the best configuration, optimised for at home where I get my more severe attacks. CHs whilst away from home are perhaps once a week and have been a lot milder, so I have:

• Home - D tank, 25lpm regulator, optimask
  
• Out of home - A tank, 15lmp regulator, optimask
  

The out of home setup packs away into a small rucksack I can fairly discretly carry around which also has a couple of Red Bulls too.

This combo works pretty well and for refills there is a BOC office where I can swap cylinders over about a 8 minute drive from work / 15 minutes from home.

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  :)

Thanks for the info.

I've got an account with BOC here in NZ which I use for a size A cylinder for when out and about (perfect as it fits inside a backpack). I also now get oxygen via the hospital which is a larger cylinder, again supplied via BOC.

I'll be over in Perth in early Jan for two weeks with work, so I'm just trying to get sorted out an account with BOC over there (the NZ account is for NZ only).

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 dazza - sounds like you got the result you needed with the oxygen.

Given that you're going through a cylinder every few days, I'd ask about having more than one just to cut down on the number of visits to BOC.

What flow rate are you using? If WDHB is anything like CMDHB, you'll have a 15lmp regulator. BOC sell 25lpm regulators, which is what I use and it results in me aborting a CH almost twice as fast and uses less oxygen, so less refills.

Have you got a preventive, like verapamil / lithium / topomax?

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.

Hi Dazza

I'd certainly try 25lpm again. I find that it just about halves my abort times.

I've no idea why a neuro should not give you a preventive. Preventing a CH from even happening is so much better than aborting a CH which means at least some time in extreme pain.

I started on verapamil through my GP. He realises that I've now got more knowledge about CHs than him, so we worked together, referencing the documentation that is frequently posted here on doses. I started at 240mg per day and increased it (after discussions) to 480mg per day which is a very effective dose for me.

I was also given Maxalt Melt as an abortive, however it gave me heart palpitations, so I no longer use it (oxygen works wonders for me).

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?

dazza wrote on Mar 3^rd, 2011 at 12:52am:

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?

Personally I get very little in the way of side effects that I can directly attribute to verapamil, but others commonly get constipation (I avoid this with a healthy diet) and tiredness. As to how it'll effect you, the only way you can tell is to try it as everyone is different.

So far (since May last year) I've not had my CHs stop (other than for a few days in a row), so I've not stopped taking it since I started using it as a preventive.

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 mate my name is Jason and I live in Auckland, I've been a CH sufferer for over 20yrs now but have only recently been diagnosed, I've been periodic over those years but the recent ones have decided to stay for a long time, its been around six weeks now and I've tried everything the Docs have thrown at me (amitrip, topamax, imigran, etc). During my spells with the "beast" my wife has found this site, I am very interested in trying the O2 as I really have nowhere else to turn as I've already had waaay too much time off work and bills are mounting meaning stress is mounting meaning (I think) the beast is getting heavier :( I'd really love to know where and who to contact about getting O2 quickly and stress free, as my Doctor is snowed under and I cant seem to get to see him for awhile because other people are selfish and think they are sicker than me :) Thanks for any help you can give me (seriously).

this site is amazing, I thought I was mental all these years.

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 

Hey thanks mate for the reply, I'm kinda after the quick way to "geterdone" as it were, because of the loss of wages thing, although work is awesome and fully understand, the power company and others dont lol. thanks though ;)

Look into welding oxygen, in the states, it literally comes out of the same tanks they fill the medical bottles from. Many on the board use welding oxygen succesfully, it's much cheaper then the stuff outta the medical bottles. Here you just can't mention it's for personal use. Tell them you have a live bait well at home and you like to keep the water oxygenated!

Joe

Hi Jason

I've put all the info I have about getting oxygen here in NZ in this topic.

The key thing is to get a letter from a doctor saying that you need oxygen for the treatment of cluster headaches. This could be from your GP or a neuro. Once you've got this, you can take it to BOC here in Auckland to get the cylinders, regulator, etc. I use the Penrose branch, but they have other outlets.

You can see a neuro without a referall from your GP. I know of several other people here in Auckland who have seen Dr Kiri Brickell (who I've seen) privately, getting an appointment very quickly.

Often with preventives like verapamil you'll find that many doctors try to use too low a dose to be effective for CH prevention.

Any questions, just ask.

Hi Mike,

My partner suffers from CH and we are having trouble getting him ANY help with even meds yet alone oxygen. Thank you so muc for your post

Hi Mike, I am a community respiratory nurse at Capital and Coast Health who was given this forum address by a patient. Obviously as a respiratory nurse, cluster headaches are not my speciality. However I am one of the nurses that oversees the home oxygen service, I had to 'bone up' a bit on cluster headaches, and even for health professionals there is very little information. I know you do not probably feel like hearing defence of GP's but it is a very rare headache and at times I feel like 'foundation of knowledge' on cluster headaches for my peers which is a little bit scary as it is not my main area of practice. We have 200 patients on home oxygen in our DHB and 7 of them are patients with cluster headaches so not that common. You are correct the Ministry of Health does not recommend funding it at the moment, those recommendations were written in the early 2000's when there was not so much evidence regarding oxygen in medical journals for cluster headaches. That has obviously changed. We choose to fund it in our service from the 'admission avoidance ' criteria, it is cheaper to fund the tank at home than fund the patient in the Emergency Department. Plus if we fund it at work, then the patient can go to work which is obviously more cost effective than having a patient at home. Each DHB makes its own decison. In our DHB we required the patient to be seen by Neurologist to confirm cluster headaches and then the neurologist requests oxygen from the respiratory physican who then faxes a script to us and we set it up. All going well it is done in a one week day once we get the script. Patients certaintly have a journey to get the oxygen but once they reach the point of the community health nursing service, I like to think it is very prompt. We deliver pay for it and set it up and will give a second D cylinder for work. The smaller 'A' cylinders do not last long and would only be good for one half hour session and then be empty, which increases logisicals and costs for us which is why we stick to the big cylinders. There are many pros for the A cylinders but that is where we have chosen to draw our funding line in the sand. We are currently putting some information regarding home oxygen on a local GP information site and I will include the criteria for home oxygen for cluster headaches. The Ministry of health is currently reviewing the funding criteria as we speak so if you contact the Ministry of Health and ask to speak to someone who is rewriting the domicilary oxygen services specifications. When speaking to the person concerned my suggestion is to offer to send through  a couple of articles from medical journals, especially 'recommended guidelines' from the various neurologist group. There is a meeting of health professionals regarding these guidelines and we will be recommending that cluster headaches will be funded. If that is agreed to then it will get easier to get the home oxygen.                              

Hi Janis and thank you for the post. It's great to see medical professionals listening to patients like this.

I totally understand how hard it is for a GP to be an expert on so much, especially as the G in their title makes it obvious that they have a general knowledge of medicine. This is why you'll see people here suggest that people see a neurologist, preferably a headache specialist to get the appropriate treatment for CH.

There are several DHBs (District Health Boards) around NZ that have made the same decision around the cost and benefits of funding medical oxygen for people with CH, especially as it can be significantly cheaper than the cost of Imigran (Imitrex) plus it has significantly less side effects.

However seeing that only 7 people covered by the CCDHB (Capital and Coast District Health Board) get medical oxygen suggests that a lot of people are not getting access to it. The figures for the incidence of CH are about 1 in 1000 people, with about 10% being chronic. With the CCDHB covering about 250,000 people (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE), it might be expected that there will be about 250 people with CH. There will be about 25 who are chronic who could benefit from oxygen all year round, with perhaps the same number of people being episodic at any one time. This suggests that only 14% of those who could benefit are currently covered.

The net result of this is that patients are either suffering or are being treated with Imitrex at a significantly higher cost and potential side effects.

After I wrote the original posts in this thread I approached the MoH about the current guidelines however I was told that it would be multiple years before they were rewritten.

I'll also contact you via PM to find out more details about how I can submit information to the body that is reviewing the current guidelines.

Thank you again for your post.

Hi Mike,

I really appreciate your knowledge of the treatments for cluster headaches; particularly from a kiwi perspective.

I'm a 27 year old male, diagnosed about 3 years ago and have thus far muddled through the pain with Sumatriptan tablets and energy drinks.

Thanks to some of your insights I asked my GP today for an oxygen treatment option and he's reccomended I try the Auckland City Hospital as I live nearby. Am keen to explore 02 as an abortive and will look into a personal oxygen tank if it works out for me.

As an aside, where do you source high potency Vitamin D3 in NZ? Countdown and health shops seem to have mostly 1000IU which makes for a lotta pill swallowing to try to get to the reccomended levels discussed in this forum.

I've just started another round of skull-crushers and am pretty motivated to try different things to stay on top of the beast.

Cheers mate,

Dylan

Hi Dylan

If your GP can give you a letter saying you will benefit from medical oxygen you can just set an account up with BOC and get it all set up very quickly. Probably worth doing this and then also working through the public health system.

Are you using any preventive at all, like verapamil, lithium, topomax, etc?

For vitamin D3 in NZ the highest I've found is 1000IU, which just means you need to buy in quantity (which alarms some pharmacies who don't know anything about dosing) and swallow a few tablets at once.

Any questions, just ask...

Mike NZ wrote on Jul 16^th, 2012 at 3:17am:

For vitamin D3 in NZ the highest I've found is 1000IU, which just means you need to buy in quantity (which alarms some pharmacies who don't know anything about dosing) and swallow a few tablets at once.

The same seems to apply in Australia - I haven't been able to find Vit D in any larger dosage than 1000IU.

Thanks Mike, will ask for my Doc for a letter for BOC on my next visit soon. Not on any preventatives, have been given the usual spiel about side effects outweighing the benefits but given how disruptive this latest bout is for me I reckon i'd try anything.

Have just got a prescription for sumatrip injections so will be testing them out soon on some of the big thumpers that wake me up.

Dylan Bird wrote on Jul 20^th, 2012 at 5:54am:

Not on any preventatives, have been given the usual spiel about side effects outweighing the benefits but given how disruptive this latest bout is for me I reckon i'd try anything.

Until you've tried preventives you've no idea if the side effects outweigh the benefits. However I know that the side effects I get from verapamil are minor in comparison to the number of CHs I just don't get due to it's preventive action.

Hi Guys

I see this post has not been updated for a while - I moved to NZ a year ago and am probably entering CH risk phase soon so want to arrange the oxygen.

If I understand you guys correctly I need to visit a neurologist, get them to prescribe the 02, take that to the hospital and get either my GP or neurologist to phone them and emphasize the urgency? Is that correct?

Thanks for the advice so far - has helped a lot. Perhaps we can work together to change the regulatory environment. Best thing for me to abort an entire cycle is intravenous hidrocortisone but my doctor tells me he is uncertain if this is a permitted treatment for CH in New Zealand. Can't believe policymakers want to tell us what works when we've been dealing with the pain and finding solutions by trial and error (and mainly from other CH'ers rather than expensive doctors) for years. Perhaps we can do something together to get them to address the issue.

Mike NZ, Wrote.The highest D3 i've found in NZ is 1000iu.

This also applys here in Australia, so i get mine online from
the US, 5000iu.

Hoppy.

Hi and welcome

There are two routes to getting oxygen here in NZ and I've done both.

The first, where you pay for it yourself, is to get a letter from a doctor to say that you will benefit from medical oxygen. This you can take to BOC. It will enable you to set up an account and rent medical oxygen cylinders. They also supply a 25lpm regulator and non-rebreather masks (although the one on the CH.com store is a lot, lot better). You may find that your GP will write this letter, but they may defer to wanting a neurologist to write it.

The second, where the local DHB pays, need you to see a neurologist who will then refer you to the respiratory department at your local hospital who will then assess if they will give you oxygen. They will supply a regulator (normally a 15lpm one, although you can go to BOC to buy the 25lpm one) and they will give you nose canulas (useless, so get a non-rebreather mask from BOC or from the CH.com store).

The ease of the second method varies quite drastically between DHBs. Yesterday I found out that in Auckland / CM DHB there are currently just TWO people out of a population of about 1.4 million getting oxygen via this route (you'd expect there to be about 1400 people with CH). However other DHBs seem to be a lot more generous with oxygen.

What seems to be the criteria for them giving oxygen for CH is that they realise that the cost of an abort from oxygen is under NZ$5 (probably less) and an abort using injectable sumitriptan will be over NZ$100. If a CH results in someone attending a doctor or hospital then the costs soar (to the DHB, not to the patient). So simple economics, never mind that oxygen has no side effects, etc. should make people see sense. However the amounts will come out of different budgets, so things are never simple.

It used to be that the MoH guidelines for oxygen use excluded using it for CH, however this was changed a while ago, as confirmed by a reply from the current Minister (Ryall) to a CH supporter here in NZ. The same supporter also did a great job in getting the ambulance service guidelines updated to include using oxygen for someone with CH.

When trying to see a neurologist, preferably one with CH experience, do look at trying to get in as soon as you can, e.g. checking for cancellations. Another option is to see one privately.

I've not heard of anyone using "intravenous hidrocortisone" for CH in NZ, so it may or may not be an option.

Here I've used nortripylene (ok results), verapamil (pretty good) and vitamin D3 (excellent) for preventives, with oxygen (excellent), maxalt melts (ok) for abortives. I've got some sumitriptan injections but haven't used one yet.

Just let me know if I can do anything to help.

I know it is a different country, but since NZ is part of the Commonwealth the guidance in GB might be of help to you if you show it to your Dr.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; In particular 1.3.27 and following.  Don't know if it is helpful or not.  It is a royal shame we have to go through so many hoops to get something so benign and inexpensive.

Jerry

That is a well written primer covering multiple headache types that should be useful for working with a GP who is not familiar with headaches. However I'd disagree with the idea that treatment should be with a GP for the first CH cycle given how most GPs seem to be fairly uneducated / experienced with CH as we see so often when people new to the forums first post.

Hi we are new to this support page and it was so awesome to find it.We are having great difficulty getting oxygen for my husbands cluster headaches. He has not had a severe episode since 2006 and we ended up in A&E IN Whangarei hospital where they put him straight on oxygen which gave him relief within about 5 - 10 minutes so its been 10 years and we are here again only this time we have had three A&E visits in just over a week and as always straight on the oxygen and he is able to sleep. It has been very frustrating getting drs to listen  and understand what we are dealing with a 30 minute trip to hospital in the early hours of the morning having to wake two primary school age children and drop them to grandparents not to mention time off work for both of us. Yet if oxygen was at his bedside it could have been quite easily dealt with. We were told it would be a 2-4 month wait to see the respiratory clinic at the Whangarei hospital but with a few phone calls we have managed to get one for Monday morning. We had another GP appt today with a GP who is filling in while my husbands normal GP is on holiday we had already seen her on Monday and i had emailed information and video clips on the benefits of oxygen which she kindly took the time to read and looked into even further so has been most helpful she wanted to check up on him today so we did that while we were waiting the nurse came out and informed us we would have a long time to wait to see respiratory clinic as Darren is a smoker ( is currently in process of giving up has not had one in 2 days) i told her we had an appt on Monday. Saw Dr she was pleased we had an appt so soon while i was in chemist getting prescription the hospital called to say they had cancelled his Monday appt after talking to the respiratory  nurse. I said do not cancel that appt make sure you hold it and raced back to see the dr and tell her what had happened and she was shocked and was going to ring hospital but also thinks it is the smoking issue.I realise they have guidelines to follow it seems so bloody pc he never smoked inside anyway and these attacks usually only strike early hours of the morning so not like he is lying in bed smoking. They say its a risk of explosion .  :-[So if they refuse to see us i guess how only other hope is going through BOC if the GP is willing to write a prescription my husbands work already has an account so would not be a problem also will try a appt with neurologist privately but he is out of the clinic until Tuesday and so is his nurse.My biggest fear is him overdosing as i had not realised he had been doubling his medication in desperation.It is so bloody hard trying to get anyone to listen and he seems to be on that much medication its ridiculous!!

Hi and welcome.

In NZ it doesn't seem to be too easy to get oxygen, but the method I described in my posts from a few years ago worked for me, so I hope it will enable you to get it for your husband.

One thing to emphasis to the doctors you see is that without oxygen you'll need to keep going to A&E and in doing so it'll no doubt cost the hospital possibly $1000 per time (which is based on the minimum fee they charge people who attend A&E without insurance). This adds up quickly and will easily exceed the cost of providing oxygen. This was pointed out to me at one respiratory clinic visit as being one reason why I got oxygen provided.

Oxygen is also much cheaper than the cost of other abortives like the injectable sumatriptan although there isn't any of this available due to manufacturing issues.

You really do need to put the pressure on and don't take no for an answer.

I've sent you by PM a link with a load of medical journal articles with many showing how oxygen is an excellent CH abortive.

Oxygen works best when you get on it as soon as possible, so having to do all you have to do means that it is likely to be less effective (although I know you can't help that). It is amazing how much less impact a CH has when you can kill it off in about 5 or so minutes.

The fact that your husband smokes should have zero impact on him having oxygen. All he needs to do is to ensure that he doesn't smoke whilst using it and he waits say 10 min after using it before he smokes (or goes near a naked flame like a gas hob or fire). After all, he isn't prevented from getting petrol or similar. The smoking bit is simply an excuse not to do things.

From experience of using oxygen, the biggest risk I've found is dropping a cylinder on your toe (the larger tanks are heavy).

I'd certainly also kick off the BOC route too, so either way he is covered. The GP doesn't have to write a prescription as such, just a letter saying that Darren would benefit medically from using medical oxygen for his cluster headaches.

If you can't see a neuro in Whangarei, I can suggest a couple here in Auckland as an alternative (info sent by PM).

You mentioned an overdose risk. What is your husband taking? Doubling up on a lot of CH medications without working with a doctor is not advised.

Tell us more and we can help.

Hi Mike,
Thanks so much for your reply we really appreciate your advice.
The Dr from the respiratory clinic called back this afternoon and told me it would be a complete waste of time going to see her as she knows nothing of cluster headaches so she is going to talk to a colleague and neurologist on monday and see who can see us. As i tried to explain to her i had information i was going to send to her regarding our  appt so she could be better informed on the use of oxygen in cluster headaches but the hospital would not give me her email address to send it to! Thank you for sending info on the specialist that you see it could end up being very helpful.We are two days without an episode but still to early to hope this is over. The medication he is on is rizatriptian,verapamil,tegretol and predisone.  Really appreciate your help.

Miller Jane wrote, So if they refuse to see us i guess how only other hope is going through BOC

Hi and welcome,
If you are still having difficulty getting oxygen, then the other option would be to get welders oxygen! Theirs no difference between that and medical oxygen, but when your at the supplier don't mention it's for CH's.

Hoppy

millerJane wrote on Mar 4^th, 2016 at 3:24am:

The medication he is on is rizatriptian,verapamil,tegretol and predisone.

Rizatriptian is what he will have been told to use when he has a CH, however there are a few issues with this. First off it can take about 10-20 minutes to take effect as it has to be absorbed via your digestive system, which is a long time to wait when you're in the middle of a CH. The injectable sumatriptan is a lot, lot better as it'll take effect in about 5 minutes but there is a supply problem in NZ (and many other countries) with none available. I've also heard of issues with the rizatriptian supply which will no doubt be from people who can't get the injections turning to use rizatriptian. There is a limit as to how many and how often you can use it too (no more than 3 per day with a gap of at least 2 hours between).

Verapamil is a CH preventive, with people commonly needing between 240mg and 360mg a day although some need up to 1000mg a day. It takes 7-10 days for a dose change to take effect and dose changed should be done working with a doctor. You also need to have regular ECGs as it can impact the PR interval. Doubling up this drug is not something he should be doing without seeing his doctor, especially is it reduces blood pressure too.

Tegretol (also known as carbamazepine) is another drug that can be used as a CH preventive (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE), however it isn't one that is mentioned as being used on this forum too often. I'd review the patient info documentation for this drug - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Predisone is a short term preventive normally give as a taper dose that starts high (say 80mg/day) and it reduces to nothing over about 7-10 days. It is normally given to allow a longer term preventive, e.g. verapamil, time to build up to an effective dose. It should not be given medium or long term as it can cause significant issues including joint damage. Again this is not a medication to double up on.

It can be painful to get contact info for medical staff, so offer to print some of the info off (not all of it as that will be too much) and deliver it to them. Alternatively ask them to look on PubMed and to search for "cluster headache oxygen" and they will find medical journal articles showing how oxygen can abort cluster headaches.

You can look at the info yourself too:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm hoping that the two day gap is the end of his episode, but do find out all you can in case it isn't and it will be also useful for the next episode too.

Once again Mike, thanks so much for all this very valuable information!! Very much appreciated.

Hey Mike and all. Mike your a true legend I hope people message regularly to let you know how valuable your sharing of this info is. You took the time to PM me back in December 2015 and recommended Dr Kiri Brickell - whilst my cluster episode had finished she diagnosed me with CH and now 2 years 1 month later (same period between 2013 and 15) it is back and I know what I'm in for at least and my GP in papakura read the letter she wrote me and started me on Predisone, Vitamin D (but really not great as I don't understand the doses and the other vitamins that Batch recommends it seems are hard to get by themselves or in the recommended doses so I haven't started taking the others yet - any local help here would be awesome. I've got a prescription of 50000 iu I think is the term and my wife also got me 1000iu from the health store - big difference so not sure what to take to hit the dose I require for effectiveness - I understand the prescription is a loading dose which says 1 per week then 1 per month after 4 weeks, didn't quite understand).
The sumatriptan the doctor gave was pill form and hasn't been that great but it has worked it's just hard to know when to take the pill as it takes a while uto work, for example at 6 tonight I felt the beginnings of a headache and took one, 3 hours later I feel a few shadows but no attack occurred but now have to see what happens tonight, which then leads to me thinking I should take another before going to sleep to avoid being woken up or, being a bit of a hardcore kinda guy was tempted if I got thrust awake tonight to chew it before I swallow but realize in reading the forum that this could result in overdose - the explanation that the injections contain way fewer mg than the 50mg in the tablet but your digestive system only allows a certain amount of the 50mg to metabolize thus  chewing it up could see a much higher dose administered - makes sense now.
The next step will be back to the GP to ask for:
- Referral to Keri again through public system, I don't have medical and paid heaaaps to see her last time and from there ask her about a drug you mentioned verapimal and also to get her to recommend oxygen for treatment in the community.
- Ask GP to write letter of recommendation for medical oxygen and go open account with BOC asap.
The GP and A&E Dr read the letter and were pretty liberal but perhaps not incredibly thorough to write up the scripts, both knew about clusters and encouraged to dose if need be to the max of 6 pills within 24 hours if need be to stay pain free this cluster episode.
On a couple other notes I openly admit that CH has made me consider all sorts of crazy things, suicide and signing out is a thought that comes to visit often if I'm honest, I just know my clusters usually last 5 weeks or so thus I can see the light at the end of the tunnel. I'm blessed with a beautiful wife, a fantastic step son, 2 beautiful border collies I know I've much to live for. The other emotion as a sufferer is self-worth, my dogs deserve the park, the beach. My wife deserves my love, my time, and affection, my step son also deserves my friendship and guidance in life - it's hard to give those things when I'm in a cycle, it makes you feel like they'd be better off without you. It's a hard path to walk. The emotional toll is high, I don't cry much if ever - the pain doesn't make me cry, it produces anger and despair - it's those things above I find myself being hit the hardest and at times lately I've cried barrels. Crying feels good particularly when you never or seldom do.
Does anyone still reading the forum know of the Dean Watson treatment for headaches? I'm going to look at exploring this and having the first session of discovery to see if it will help; I'm not sure it will but much like the Dr Shevel solution, it's hard to see the forest from the trees when you read their reasons and logic, they often resonate and make sense.
I'd love to know if any of you have experience with either in recent times, I realize that it's been posted about a few years ago.
Again thanks Mike for your contributions, you have stared me on what I think is the right path to get on top of this disease (I refuse to call it the beast, gives it a certain  power I don't want it to have, it immortalizes it)
Pain free blessings to all, sincerely.

Thank you for the compliments, but it is a whole load of people who post here both present and past who have made this the place it is.

Another headache specialist in Auckland is Dr Rosamund Hill, I saw her a few weeks ago and was most impressed with her headache knowledge. She was great at getting to grip with my complex head / headaches and working on some new options to improve things (other than CH which is under perfect control thanks to D3).

Over the several times I saw Kiri, she went from not including D3 in her options to including it (possibly partially influenced by my suggestions), however when I last saw her was using a 50K iu dose once a month. However the half life of D3 (and what it is metabolized to) are only about 2-3 weeks, so this approach will lead to the D3 related levels being high at the start of the month, then decaying down over the month, potentially to too low a level, before being boosted at the start of the next month.

The approach from Batch has a daily dosing of D3 which will keep the levels much more consistent over the entire month. I follow this approach.

When you purchase D3 in NZ without a prescription you are limited to purchasing tablets of 1000 iu at a maximum, which means both swallowing a lot of pills plus it becomes expensive. This is also a limitation in many countries around the world.

What a lot of people do is to buy them from the US where you can get 5000 iu tablets and at a lower price from places like iherb.com and no doubt others, but the iherb one is often mentioned on here.

If you can get a prescription for D3 to cover tablets through the month, then this will also be worth exploring, although I've not managed this yet...

To complete the recipe in NZ, I also take the ones in this photo - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Watch prices at the pharmacies, they seem to bounce between them being at a high price for a few weeks and then they drop them for a week or two. So just try a few places to find them at the lower prices.

Your GP will be able to write prescriptions for sumatriptan injections which work a whole lot better than the tablets, with them taking around 5 minutes to work. Just ask him for these and if they say they can't (other than for medical reasons), tell them to check with a pharmacy and if that fails, let me know and I can suggest a GP / pharmacy about 10km(ish) away that does.

I'd be hesitant to take 6 50mg sumatriptan tablets unless very well spaced out over 24 hours, with most instructions saying to only take 2 of the 100mg in 24 hours. It is also designed to be swallowed and not chewed.

With having the injections I don't have too much experience of the tablets myself, although I've some on hand in case I ever need them.

Some people have used them as a preventive to give themselves a few hours sleep, but they are not designed to be a preventive.

Verapamil is the standard go to preventive for most people with CH, with many needing 360-480mg a day although some go to 1000mg. This is normally spread out across the day, but this need not be equally. There are also two forms, one is instant release and the other is sustained release. Some people work better with one compared to another. It also takes 7-10 days for a dose change to take effect, so don't expect instant results and keep increasing the dose (which must be done working with your doctor).

Your GP might be reluctant to write a letter for BoC, but do ask, so this might need to be something that Rosamund / Kerri has to do.

As to the other effects CH can have on you, you'll find many posts on this, with a recent one being - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

As everyone here knows just what CH is like, which people without CH never have a hope of truly understanding, it is no surprise that it effects our emotions too. The best way to minimise the impacts is by getting your CH under control with effective preventive(s) and abortives. And whilst that does not happen overnight, it can and does happen, as so many of us here can confirm.

If you need further help with this, do work with your doctor and / or the many helplines available in NZ.

I'd not heard of Dean Watson, but from looking at his website their focus is to resolve neck problems as they believe that this is the source of many headaches. Whilst I suspect that this can help many people, I am unsure as to how it will impact someone with CH.

Dr Shevel has been mentioned multiple times on this forum. I suggest you use the search engine at the top of his page to find the posts. This isn't an approach that I ever intend to explore.

Keep reading and you'll learn a lot from so many people.

Gidday Mike & any other Kiwis that might be reading.
Thanks for giving me a call the other week, it was highly awesome of you and the info you and others have shared to date has been awesome.

As in my post above, I've had two epsiodes before (2013 and 15) - both in December and lasted around 4-5 weeks.
This time there was a wee delay, the 13th of January this year. I popped myself off to my GP armed with an understanding that I was dealing with cluster headaches (nightly headaches, once every 2 years, same time of year, incredible pain located behind right eye and right temple, waking pretty much same time each night around 1-1:30am)
My Doctor wrote a script for Predisone (12 day tapered dose) and sumitriptan tablets.

I have kept a diary this time and this has helped me track when the first headache started this time, what medication I've taken and when I've had headaches.

After doing more reading here and speaking with Mike, I decided to start the D3 regimen and all the co-factors.
I did more reading on D3 and found a useful post that explained loading doses so I read until I understood, I have started on a loading dose (GP prescribed me the 50,000iu D3 tablets to get my started, I opted on the 2 week loading dose) and I started this on the 17th of January. I am now a day or so away from moving to a 10,000iu per day dose along with all the other co-factors.

I havent had a headache since Tuesday the 23rd. I was incredibly scared of taking my last prednisone tablet on Thursday the 25th but I have had 4-5 days without any headache and no prednisone, do others have such success in starting the D3 regimen - it's pretty remarkable but hard to pinpoint that this was the influencer - it most likely is or will have been a combination of the prednisone and the D3 regimen.

I have also seen a headache clinic specialist in Auckland whom follows the Dean Watson approach, and I've done this alongside the D3 regimen so it becomes quite difficult to ascertain what has had the most impact, I'm not regretting either decision though. Again it's hard to know if the densitization of the areas on my neck has influenced my improved situation but I'll take it anyway. It isnt a long term treatment and the skills that she has shared with me in terms of proper posture is good information anyway that I will work into my daily life in the office / car (I drive around a lot, sit at a computer a lot and my posture as it turns out is really poor).

As I move and continue forward with the D3 maintenance program, I'll continue to use this and have my levels tested over the next couple of weeks to ensure I am not sky-rocketing any of the particular co-factors and that my D3 is in the sweet spot.

I also went back to my GP and discussed a couple more things, one of which was to have a letter written to obtain oxygen through BOC. I've opened my account, it was very painless and easy, the team are quite helpful and the bottle and non-rebreather mask will be ready to collect on Thursday (albeit I might just order the mask from here anyway as it is so highly recommended). I look forward to adding this to my arsenal, at this rate I may not need it but if I do, I'll be some what looking forward to taking control back and aborting the damn cluster attack and going straight back to bed!

I also asked the GP to follow up on my previous neuro appointment back in 15 and I said to him that hey, whilst I feel like I am moving in the right direction - I pay taxes, have done since sparrows fart when I started working at 15 so I want a referral to see another neurologist through the public system and I want the MRI that the previous neuro recommended.

The MRI is important, I understand this, and I tell you that since my headaches this time around are a far cry from the pain I experienced back in 13 and 15, it leaves my weary / scared that perhaps it isn't clusters afterall but rather something more sinister, I just have to not freak out I guess and await my appointment. A dear friend of mine has just had the same diagnosis and hasnt been given great news so this topic is front of mind for me at the moment.

I've learnt about the use of magic mushrooms medicinally and I'm interested, sounds like a fascinating hobby and since I now understand a medicinal dose is no where near going to make me visit spirits, see flying elephants and listen to the sounds of beautiful colours, I'm interested to give it a go albeit I'd want to procure them through a safe channel and harvest in a very controlled and diligent manner. I have only started my interest in following this path and I've much more reading and understanding to do before I will entertain breaking the law in my country to add this to my arsenal against cluster headaches.

I am left with a few questions though around the things I've experienced, if you wouldnt mind humoring me please.

Oxygen
1. For those with episodic clusters like I believe I have, once you get an o2 bottle but you're getting so much success with your preventative treatment (D3 or MM etc) - do you just keep the bottle under perpetuity until you need it? I might not have another attack ever (here's hoping) or the next attack would typically be in December of 2019. Am I all good to just keep the bottle I am picking up Thursday until then / forever under safe keeping at my house until I need it / use it all up before taking the cylinder back to swap? The person at BOC said that they recommend maintenance check every 5 years!

2. With the Vitamin D3 Regimen, and the fact that I have had severely reduced / no headaches since I started the 2 week loading dose (even though I am 4 days without prednisone) - what do others feel during their normal cluster when using the regimen? i.e. I still feel a bit of tension in my neck and a bit of noticeable tension in my usual cluster spots.

I also feel quite lethargic / tired - not too keen to do much albeit we have had severely hot weather here, my wife has been in much the same mood so I may be reading into it too much.

I have been noticing the tension I mention more when I awake in the morning, almost as though I've had the attack overnight but it wasn't enough to wake me up albeit left with the remnants in the form of tension in my cluster spots when I awake. Is this something others can relate to? Perhaps this will subside / stop once my episode ends (in the next week or two by history).

3. There is heaps of reading on D3 and I've trawled through many, many posts. Not many posts however talk about some of the long term considerations around popping these vitamin pills daily, I have formed the view that as they are available essentially from a chemist and not a prescription med, for the most part a natural preventative - that I'd be doing myself more benefit than harm in introducing these into my daily life year round and into the future, not just when I expect to have a cluster episode. Is it safe to do so at the maintenance levels, or are there any long term considerations I should be aware of?

4. In reading many blogs, posts, experiences, research etc I do recall a frequent topic being raised about gut health and brain health being related - that most disease starts in the gut. This for me makes sense, I've notoriously been a bad eater, dont do breakfast (now I do! and a good one, toast and bananas etc alongside my D3 regimen), had horrible sales-man lunches (whatever was convenient or no lunch at all) then had the massive dinner at night. This is changing and I'm adopting some good habits in this area but I'm very interested to know of any informative posts that show a correlation between the two and any positive ways to cure the digestive system and return it to as normal as possible.

Thanks for all your advice to date, and pain free wishes to my Kiwi brothers and sisters, and to all on the forum and in the world.

Great post to read showing how you've well and truly taken control to get things progressing for you.

The D3 test isn't publically funded, so whilst your GP can do the form for you, you'll need to pay about $40(ish). The last time I did this was at Labtests, which are all over the Auckland area.

Feeling some trepidation when taking the last prednisione tablet isn't unusual, lots of people here report the same.

The full D3 info is at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

The difference between the BOC mask and the one from here is like comparing food from McDonalds to a top restaurant. But hoping that all it does is to gather dust.

The MRI is to rule out other possible causes of the same symptoms. For probably 98+% of people who have reported back here, it shows nothing at all abnormal, but for some there has been a different cause of the symptoms including brain tumors, aneurysms and eye infections plus others. So it is good to rule things out (I agree about you getting some return from many years of taxes if you're not in Southern Cross or similar).

For info on alternative methods, have a look at clusterbusters.com. This isn't an area I have any direct experience in.

For your questions.

#1 - I kept my cylinders for a year or two after my last CH before returning them. If my CH returns then I know I can get them quick plus I've sumatriptan injections to carry me over. Return them when you are comfortable. Going to BoC direct you will pay about $4 per cylinder per month (prices from a few years ago), so not expensive to keep them. You don't get a refund for unused O2 on returning them.

#2 - People have reported from no symptoms at all to a significant reduction in CH but still having some. So somewhere between isn't unexpected. It is possible that your D3 levels are still building up to the level where you can go symptom free. There is more info in the D3 link I posted earlier.

With the 30C and 95%+ humidity I think anyone without air con is tired from disturbed sleep.

#3 If you went outside at noon in the weather we have wearing shorts you'd generate well over 10K iu in just a few minutes. Many of us have been taking 10K iu for years and other than higher D3 tests than most people (with healthy Ca levels), there seems to be no issues. But do talk with your GP.

#4 Some probiotics might also help, especially if you have antibiotics which kill off more than just your malicious bacteria. Good food helps you so much more than just in relation to headaches.

This has been very helpful to read, put some hope back in me after struggling to get anywhere with trying to get oxygen in NZ, mainly due to GP/Chronic Pain/Neurologist/Respiratory team not accepting it.

Even after once being admitted and given high flow oxygen and it helping  ::)

We're happiest when we can help,  Memske.

Welcome aboard.

Hi Memske and welcome to where we know CH just like you do from personal experience.

Having GPs, doctors and even many neurologists not know how to treat CH is something that is sadly all too common so you're not alone in what you're going through.

I was only able to get O2 from learning here about its benefits and then simply not taking no for an answer. I've sent you a link to where you can download a load of CH related articles from published medical research journals and you'll see O2 as being one of the standard ways to kill off CHs. Whenever you get a doctor / medical worker who is ignorant of the facts or is so outdated that they don't know of the published medical research in this area that dates back to pioneering work in this field by Prof Kudrow (his daughter is the actress from Friends) which was published  in the 1980s.

Whilst they can ignore the evidence that you aborted a CH with O2, it is only likely to be from showing real published medical research that they might change their mind.

If they say it can't be done, I can send you the contact information for the person I deal with in CMDHB who can confirm to them that it is possible.

Anyway, apart from issues with getting O2, have you an effective preventive and sumatriptan injections to abort CHs?

Tell us more and we can help you. I can put a kiwi spin on anything people suggest.

You've now got highly experienced CHers on your side.

Keep reading, learn more and ask anything.