Oxygen (O2) Therapy for Cluster Headache

Please find informational downloads and HOOF forms at the bottom of the page.

Oxygen Therapy is one of the two main abortive [painkilling] treatments for cluster headache. 

There are two types of oxygen therapy – short burst oxygen therapy [SBOT] and ultra high flow oxygen known as demand valve. 

Who discovered this and when? 

Back in 1982 a headache neurologist in America, Dr Lee Kudrow – who is also a cluster headache sufferer – noticed that he sometimes yawned a great deal before his attacks started. Yawning is set off when the brain gets a message that it is short of oxygen. So, he decided to try inhaling oxygen when a CH attack started and he got a very positive result! A study followed and he began prescribing oxygen for his patients. 

Later, a functional imaging study of the hypothalamus [a small organ at the base of the brain], which controls the body’s autonomic systems, becomes active. This system tells you when you are tired, hungry, thirsty, your blink rate, your heart rate and other more personal bodily reactions! In cluster headache it is thought that the brain sends a false message that it is short of oxygen and the hypothalamus gets you yawning and starts expanding blood vessels very quickly in the search for oxygen. The expansion of the blood vessels puts enormous pressure on the nerves in the head, causing the terrible pain of cluster headache. Oxygen therapy reverses that message and the pain starts to ease. It is not a 100% effective treatment, but does work for a very high percentage of cluster headache sufferers. OUCH [UK] did an anecdotal study in 2014 of both oxygen therapies, and reported a higher success rate with demand valve. It also showed that demand valve oxygen could abort an attack in minutes. More later on both the therapies, and their usage. 

OUCH [UK] began advising sufferers on oxygen therapy from the charity’s inception in 2002, and were able to help sufferers get the correct prescription and the non-rebreather mask which was originally prescribed. At first we could not get high flow oxygen, we could only get 2- 4 litres per minute [low flow] oxygen, which was no use in cluster headache; it needed to be at between 8 to 15 litres per minute high flow oxygen. Our first oxygen trustee, Curt Eijvergard, worked to get the prescribing for CH changed and organised a loan scheme for high flow regulators. 

Then a member suggested we needed the non-rebreather masks that have a little plastic bag on the mask, that way we got 100% oxygen with each breath. Coming to 2012 Mike Pollock, a former trustee of OUCH tried oxygen with a demand valve. This is a mouthpiece similar to that used for entonox in pain relief, particularly in childbirth. This method has distinct advantages over high flow oxygen, it works much faster [the anecdotal study proved that], it is much safer than the high flow, and long term, it is much cheaper [to the NHS] than SBOT. Demand valve is much cheaper in the long run. Why? Because the mouthpiece opens as you inhale and shuts off as you exhale, so the oxygen is not flowing constantly as it is with SBOT. Cylinders last much longer and this means the cost is much lower than SBOT. With demand valve, you only need to turn the cylinder on, a flow rate does not need to be set; your inhalation will govern the flow. 

In 2014 OUCH[UK] carried out an anecdotal study of ultra-high flow oxygen[demand valve] therapy compared to the SBOT therapy, and a higher percentage of sufferers achieved abortion of an attack and more quickly on demand valve, and we hope that a formal study will soon be done to prove this. 

So how do you get oxygen prescribed? Your GP can prescribe it for you. The British National Formulary lists oxygen therapy under the section for Cluster Headache treatment, and the National Institute for Healthcare and Clinical Excellence, [NICE] brought out GP prescribing guidelines for all headache conditions including cluster headache. The NICE guidelines say if the patient has the listed symptoms of CH, the GP can go ahead and prescribe oxygen and refer the patient to a headache neurologist. A call to our advice line will tell you the nearest headache neurologist to where you live. If your GP refuses to prescribe the oxygen, we suggest you make a complaint to the practice and if it is still not forthcoming, you can make a complaint to your Integrated Care Board, listed in the telephone directory. 

In the downloads section below we have copies of the current Home Oxygen Order Forms for both SBOT and demand valve oxygen therapy. These contain the approved prescribing details for each. Your GP will complete the forms through an online portal with the area oxygen provision company. The oxygen supply regions are as follows: 

OXYGEN SUPPLY COMPANIES AND THEIR CONTRACTED AREAS 

AIR LIQUIDE: London and South-west England 

BAYWATER: North-west England, Yorkshire, Humber West Midlands and Wales 

BOC: Eastern England, East Midlands, Northern Ireland 

DOLBY VIVISOL: North-east and South-East England, Scotland 

In Scotland and Northern Ireland sufferers need to be referred to a secondary clinician for oxygen prescription. 

If you have certain respiratory conditions oxygen will not be prescribed. If you are not sure if you have a respiratory condition, you can ask your GP to carry out a spirometry test. Now, some hard news for some of you, at present if you are a smoker oxygen will not be prescribed, that applies to all oxygen users. Your GP will ask you to give permission for your personal details to shared with the oxygen company, and he will complete an Individual Home Oxygen Risk Management form, asking about your home and who shares it with you. 

Your oxygen will be delivered within a day or so, and the delivery driver will show you how to use the equipment and give you a patient handbook with the contact number for ordering replacement cylinders. 

USING SBOT OXYGEN

As soon as you know an attack is starting turn your cylinder regulator on to 15 litres per minute. Hold the mask to your face to achieve a good fit to ensure 100% oxygen inhalation. Breathe normally and when the pain starts to lessen you can turn the regulator down a little to between 8 to 10 litres a minute. When the attack has gone, stay on the oxygen for five to ten minutes to ensure you have really mopped up the attack; if you stop the oxygen too soon there is a chance of a rebound attack. If, after half an hour or so the attack has not gone or diminished, turn off the oxygen, but do not give up hope! Try again with the next attack, and get the therapy going as soon as you know the next attack is starting. 

USING ULTRA-HIGH FLOW [DEMAND VALVE] OXYGEN 

Turn your cylinder to ‘ON’. Do not set a flow rate. Breathe normally through the mouthpiece. As you breathe in the valve opens and delivers the oxygen at a rate governed by your lung capacity, when you exhale the valve shuts off, until you inhale again. Once the attack is gone, just give a couple of minutes more on demand valve. Many users can abort attacks in less than ten minutes with demand valve therapy. 

SAFETY ADVICE 

SBOT. Ensure that your oxygen is stored away from lighted candles, lighted incense sticks, calor gas heaters, open fires and lit barbecues. If you have sore lips or a sore nose, do not use Vaseline, cosmetic creams, lip balms, as they can act as an accelerant with oxygen. Please use a water based gel instead. Also oxygen can be absorbed not just into the skin but also into your clothing; wait at least half an hour after an attack for the oxygen to dissipate before moving near any flammable source.

DEMAND VALVE 

As you use a mouthpiece [there is also a facemask that can fit over the mouthpiece if you prefer that], please do not use lipstick, lip balm and cosmetic skin creams. Again as the oxygen only flows when you inhale much less is absorbed into the skin and very little into clothing, but please again give half an hour before moving near flammable sources. 

We suggest that when you have the oxygen in place you notify your local fire station that you have oxygen at home. They will appreciate knowing that if they are called to your home, they will know in advance that there is an accelerant [your oxygen] present. They will come to your home and carry out an inspection and advise you on safe storage and usage. Further, we suggest you contact your home and car insurers to let them know you have oxygen. This will not affect your premiums, but if there is an incident and they discover you have oxygen either in your car or at home, and you have not reported its presence to them, they may refuse the claim. 

TRAVEL WITH OXYGEN

The oxygen companies can arrange oxygen to be delivered to a holiday address in the UK. The guidance for arranging this will be in the handbook given to you at the delivery of your first oxygen. You can take oxygen on trains, but you must book in advance and tell them you will be carrying oxygen. It is not allowed on the London Underground, or buses. For both passenger and car ferries you need to check in advance, some will, some won’t allow oxygen on board. All airlines do not allow portable oxygen cylinders on board, but it is worth knowing that aircraft onboard first aid kits have portable oxygen and a cluster headache attack would certainly qualify as an emergency. 

It is possible to order oxygen overseas from Worldwide Oxygen. In America and Australia you need to contact an oxygen supply shop or company near your holiday address, and they will probably ask you to send a prescription from your GP, and they will then supply what is on that form. But you will have to pay for it.

Downloads and O2 forms