Cluster Headache New Zealand
A New Zealand patients guide to managing cluster headache.
If you are a sufferer of cluster headache in New Zealand, you may find this page helpful in navigating this complex disease. My name is Craig Stewart. I am a New Zealand cluster headache sufferer whom has navigated the disease since 2013. The views expressed here are simply my own and in no way are to be construed or taken as medical advice.
This article was published on 2nd March, 2024.
You may view the main page here.
Welcome
If you have found this webpage then I am guessing you find yourself a sufferer of cluster headache, either at the early stage of diagnosis or a cluster warrior who has suffered with the disease for sometime. I am sorry! As a sufferer of cluster headache since 2013, I know how truly difficult the disease is to live with and how helpless you may feel if you have not found a preventative treatment option that keeps you in remission and the clusters at bay.
In this article I am going to share with you a little about my journey with cluster headache, how I have been able to achieve pain free remission from cluster by and large since 2015 and some advice that I believe you will find helpful as well as some useful links to support groups and resources that I recommend you utilise.
Listen to my Story...
My Personal Journey with Cluster Headache in New Zealand
It was November 7th, 2013, when I was struck by my first cluster headache attack. The pain hit so suddenly and violently that I elbowed my wife awake, convinced I was having an aneurysm. The only way I can describe it is like a brain freeze from ice cream, but instead of lasting seconds, it stayed for minutes or even hours, repeating multiple times a day for weeks on end.
We rushed to Middlemore Hospital, but by the time I was seen hours later, the attack had passed. Exhausted, I was sent home with painkillers, thinking it was a one-off. The next night, when the pain returned, I saw my doctor who blamed stress from my mother’s recent death. What followed over the next few months was pure torment. I’d pace the garage through the night, gripping my head, trying not to wake my wife. The attacks came like clockwork at 11pm, 1am, and 3am, and by dawn I was swigging whiskey just to sleep, unaware that alcohol was a trigger.
When the attacks returned in November 2014, I broke down. I told my wife I wasn’t strong enough to face it again. I cried daily and started to believe she’d be better off without me. I didn’t yet know what was happening to me, only that I was trapped in a living hell.
Getting a diagnosis of Cluster Headache
It wasn’t until early 2015, when I paid to see a neurologist in Auckland, that I finally received a diagnosis of episodic cluster headache. Partway through my second cycle, I was introduced to a frontline abortive, sumatriptan, and a commonly used bridging medication, prednisone. Sumatriptan was only partially effective at first, as I was prescribed 50 mg tablets that took around 25 minutes to work. As anyone familiar with this pain can understand, I grew desperate and began chewing the tablets to get faster relief, unaware that doing so was unsafe and could lead to rebound or “slap-back” attacks caused by overuse.
The neurologist’s notes included a recommendation to my GP for home oxygen therapy and a brief mention that Vitamin D3 might be effective for cluster headaches. They also noted that some sufferers reported success with psilocybin, or magic mushrooms. Regarding Vitamin D3, the neurologist said, “I can’t tell you how much to take, but I have heard Vitamin D3 can be effective for cluster headache.”
Suicide Headache... Ungh.
I got through that cycle, but when the attacks returned in November 2015, knowing what I was dealing with didn’t make it easier. Sumatriptan was causing rebound headaches, and prednisone could only be used for short periods. My cycles lasted from November to March, and the medication only partly reduced the attacks. My mental health collapsed. The pain and helplessness were unbearable, and I started planning to end my life. I even withdrew money to buy a firearm.
Then two things happened. I found a doctor in South Africa claiming to cure cluster headaches. It looked legitimate, with testimonials and promises of surgery. I met with my employer and planned to mortgage my house for the trip. But after joining online cluster headache groups, I learned it was a scam. He was known as “the butcher.” I was crushed but grateful I hadn’t gone through with it.
Around the same time, I began seeing people online talking about the Vitamin D3 Anti-Inflammatory Regimen for Cluster and Migraine Headache. It was the second time I’d heard about Vitamin D3, the first being from my neurologist. I was skeptical and even angry. How could a vitamin possibly help with something so horrific? But a voice inside me said to give it a try. I downloaded the information from clusterheadaches.com, read it repeatedly, then took it to my doctor to request the lab tests and Vitamin D3 prescription. It was the turning point.
Going it alone...
The response from my doctor, looking back, wasn’t surprising. It reminded me of how my mother’s oncologist reacted years earlier when we asked about an alternative melanoma treatment. They look at you as if you’re grasping at straws, and the truth was, I was desperate. He refused to order the lab tests the regimen required but prescribed a 14-day course of prednisone and Vitamin D3, one 50,000 IU capsule to be taken monthly for a year. He skimmed through the printed guide for the Vitamin D3 Anti Inflammatory Regimen, handed it back, and said it was unlikely to work.
I ordered the remaining supplements from iHerb, including magnesium, fish oil, vitamin K, and a men’s multivitamin with boron, zinc, and retinol. I started the prednisone and decided to try the regimen despite not having the lab tests. Impatient for the delivery, I went to the pharmacy to find what I could. I managed to get magnesium, fish oil, and a multivitamin but not vitamin K. I started Vitamin D3 the same day as prednisone. The attacks reduced almost immediately, but I knew prednisone’s effect would fade after two weeks. If the Vitamin D3 regimen didn’t work, I was out of options. It felt like borrowed time.
I rolled the dice and decided to try the Vitamin D3 Anti Inflammatory Regimen
I was nervous taking what I thought was a huge dose of Vitamin D3, 50,000 IU a day for 12 days, totaling 600,000 IU. My doctor had warned it might be toxic and told me to take one capsule a month. He was wrong. The actual lethal dose (LD50) of Vitamin D3 is about 37 mg per kg, meaning you would need to take an absurd amount to come anywhere near danger. I pushed the fear aside and continued the regimen, waiting anxiously. On day eight of the loading phase, the attacks stopped.
I remember waking up that morning, realizing I had slept through the night, and elbowing my wife awake to tell her. I hugged her and cried tears of relief. I finished the prednisone and the 600,000 IU loading dose, and by day 15 I was still pain free. The attacks didn’t return. December, January, February, March came and went without a single cluster headache. I couldn’t believe it. I had gone from planning to take my life to feeling normal again, all because of a vitamin.
When the clusters returned in November 2016, I followed the exact same plan and had the same result. By day nine, the pain was gone. Once could be luck, but twice was proof to me that something real was happening. I decided then that vitamins weren’t just expensive urine as many doctors claim. Vitamin D3 was clearly more important than I had realized. I stayed on the regimen all year, keeping my level between 80 and 100 ng/ml with a maintenance dose of 10,000 IU daily plus the cofactors. November 2017 came and went without an attack. The same happened in 2018, 2019, 2020, and 2021.
In 2022, my clusters came back. By then I had learned a lot about Vitamin D3 and was in touch with Pete Batcheller, the retired Navy fighter pilot and fellow sufferer who created the regimen. I called Pete and said, “Pete, my level is perfect at 99.3 ng/ml, but the clusters are back.” He paused and said firmly, “Take 600,000 IU of Vitamin D3.” I argued, thinking he hadn’t heard me, but he replied with even more confidence, “Take one million IU of Vitamin D3.” I trusted him. I loaded 100,000 IU per day, and by day four, the attacks stopped again. I haven’t had another one since.
If you’ve made it this far, I want you to know there is hope. Vitamin D3 is safe and remarkably effective for cluster headache. Since sharing my story, I’ve received messages from sufferers around the world. One man from Belgium who had lived with cluster headaches for 25 years told me his neurologist said he might as well try the regimen. Two weeks later, he was sleeping through the night. His email subject line was “Enchanted Craig.”
Stories like his are everywhere in the cluster headache support groups online. People are getting their lives back. The Vitamin D3 Anti Inflammatory Regimen is safe, accessible and incredibly effective. You can watch my podcast on this page to learn more, and you’ll see the proof in the comments from others who have tried it.
You’ll find links below to learn more about the regimen. The information is free. Neither Pete nor I sell anything or make money from supplement sales. Buy whichever brand you prefer. What matters is that it works.
Clinics offering Adjustments of the Neck
If you are searching for cluster headache help or treatment options in New Zealand for cluster headache you are likely to see targeted ads and websites from headache and migraine clinics offering a solution by way of upper cervical spinal adjustments, often they rank highly in Googles search engine when searching terms like “cluster headache NZ”. They claim if they can replicate the pain of cluster then there is a high chance they’ll be able to offer a positive outcome using this technique. Be cautious of these treatments! They may be sincere people however I have personally seen little to no evidence by way of feedback from the cluster headache patient community over the years that these treatments work.
In the early years of my journey with cluster I tried one of these clinics with no success and it is my view having spent a lot of time in patient communities and cluster headache advocacy work that they are unlikely to help and can be very expensive. A prominent New Zealand based neurologist had the following to say about these methods of treatment in this article (of which I contributed alongside Dr. Kiri Brickell and others).
But Hill is unconvinced. In her opinion it’s a “waste of time” and not something she’d ever recommend to a patient. “I’ve never ever been aware of physio being a helpful thing for cluster headache. There are some clinics in New Zealand who are targeting patients with headache and migraine, but their techniques as far as I’m aware have no evidence that they are more effective than other physio techniques,” she said. “There isn’t anything magic about what they do and it certainly wouldn’t be anything that I as a neurologist would refer a cluster headache patient to.
Where to from here for the New Zealand Cluster Headache Sufferer?
If you are wanting more information about the Vitamin D3 Anti Inflammatory Regimen including the free guides as well as to watch an interview podcast I filmed with Pete Batcheller that explains the regimen using simple language and illustrations, then you are welcome to visit the main page linked below. All the information is supplied free of charge and I pray that you find the same relief and success that I have experienced following this regimen.
There are some remarkable people you’ll meet in the cluster headache community. Cluster headache sufferers are amongst the most kind, generous and caring people I have met in my life. I have made lifelong friends through these communities. I strongly encourage you to join the following cluster headache support groups on Facebook.
Australia New Zealand Cluster Headache Support
Cluster Headache Community (TAC)
Cluster headaches (trigeminal autonomic cephalalgia)
You will find many in these patient groups discussing alternative treatment options including Vitamin D3 as well as using psilocybin mushrooms and other psychedelics for the effective treatment of cluster headache. Whilst I have had amazing success with Vitamin D3, I have never needed to use this alternative option however I can tell you from following these groups since 2015, many cluster warriors have found success using this treatment option. Cluster Busters is an amazing patient outreach organisation and offer guidance should you wish to pursue this option.
https://clusterbusters.org/resource/the-dosing-method/
If social media support groups are not for you there is another web based forum that is a little less active however is full of helpful resources and threads that discuss pretty much every aspect of cluster headache. I thoroughly recommend joining the forum at Cluster Headaches.
Oxygen Therapy for Cluster Headache in New Zealand
Oxygen therapy as a front line abortive is incredibly effective for cluster headache, it is by far a preferred choice to using sumatriptan. There is no limit to the amount of times you can use oxygen to abort a cluster headache over a 24 hour period, it is relatively affordable and it works much quicker than sumatriptan tablets and comes with a far greater safety profile.
If you see a neurologist ensure that you get them to write a letter recommending oxygen at home / in the community to be used as a front line abortive therapy for cluster headache. You may take this letter to your GP whom can write a letter to BOC instructing them to authorise the supply of oxygen cylinders for the management of cluster headache. From there you can send the letter to BOC whom have a medical team that is familiar with cluster headache, they will setup your account allowing you to either have oxygen delivered or collect the medical sized cylinders (D2) from one of their collection points.
A few things to note here, for oxygen to be effective you need a quality non-rebreathable mask. Fortunately DJ over at clusterheadaches.com has them in stock and sends them out super quick. If you ordered one today it will arrive in about 7-10 days via FedEx. The link to the Cluster o2 Kit is below.
https://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
You’ll need a regulator that connects to the medical oxygen cylinder and your mask that provides a sufficient flow rate of pure o2 at a minimum of 10-15ltrs per minute, any less (such as what you will get from an oxygen concentrator) is simply not enough to be effective. Regulators can be expensive if purchased in New Zealand so I recommend purchasing a regulator from an overseas site like eBay. I have provided a link below to search eBay for the appropriate regulator. If you are needing one right away, then I welcome you to reach out to me using my contact information below and I will send you one to see you right until your one arrives.
https://ebay.to/3TDP4tr
If funds are not an issue you can purchase an o2 regulator from a local supplier such as Capes Medical, I have included the link below.
https://bit.ly/4edLLBt
Using the right breathing technique is super important when using the Cluster o2 Kit to successfully abort a cluster headache and to prevent slap-back attacks. A slap-back attack is when you abort a cluster headache only to find you have another attack shortly afterwards, usually because you have not stayed on the oxygen for long enough. The video below is one of the best that shows the correct breathing technique.
Purchasing the Vitamin D3 Regimen Supplements
Many reach out to me to ask about where to source the supplements and what to purchase. The brands that are detailed in the guides that Pete Batcheller has produced may be unavailable in New Zealand. I have always used iHerb to purchase the supplements, they arrive in fairly good time. The below links include all of the supplements I use and would allow you to get started with the regimen. I reiterate that none of these links include an affiliate code – I have no interest in making money off cluster headache sufferers, it would feel totally inappropriate to do so, they are provided for your reference only.
I reiterate again if you are considering following the Vitamin D3 Anti Inflammatory Regimen for Cluster and Migraine Headache it is crucial that you discuss this regimen with your Doctor or Neurologist before starting, whomever is most familiar with your condition and overall health profile. There are certain conditions such as hyperparathyroidism or medications that may preclude Vitamin D3 supplementation or therapy. Ensure that you have read the guides top to bottom, once, twice – as many times as required to fully understand the different aspects and elements of the Vitamin D3 Anti Inflammatory Regimen for Cluster and Migraine Headache.
Vitamin D3
10,000iu Capsules: https://nz.iherb.com/pr/source-naturals-vitamin-d-3-250-mcg-10-000-iu-120-softgels/78041
Fish Oil
1,040mg Omega 3 Fish Oil: https://nz.iherb.com/pr/sports-research-omega-3-fish-oil-triple-strength-90-softgels/90284
Magnesium
400mg Magnesium Glycinate (Option – 3 capsules per day):
400mg Magnesium Glycinate (Option – 2 capsules per day):
Multivitamin
Mens: https://nz.iherb.com/pr/nature-made-multi-for-him-90-tablets/40396
Womens: https://nz.iherb.com/pr/nature-made-multi-for-her-90-tablets/40397
Vitamin K
MK4 1000mcg & MK7 100mcg: https://nz.iherb.com/pr/life-extension-super-k-90-softgels/90368
Methylated B-50 Complex
https://nz.iherb.com/pr/solaray-methyl-b-complex-50-60-vegcaps/73715
Get in Contact
You are welcome to get in contact with me if you feel I can help you or you’d like to offer feedback. It is my sincere pleasure to assist my fellow cluster headache warriors navigate this complex disease.
Fill out the form below to send me a message or email me at craigedstewart@gmail.com
Disclaimer
Nothing that I have discussed in this article is intended to be taken as medical advice. I am not a Doctor and I am not qualified to offer medical advice. In all instances it is recommended that you discuss any treatment option you may be considering with a qualified health professional, ideally the doctor that is most familiar with your condition and health profile. There are some conditions and medicines that preclude Vitamin D3 therapy, do not attempt to start this regimen without first seeking the advice of your trusted healthcare professional. I accept no responsibility for any of the information supplied on this webpage. The information is provided as an account of my personal experience as a cluster headache sufferer only.
