Getting access to oxygen can be a fight. You will walk a chain of doctors, suppliers, and (in some regions) insurers, any of whom can say no. This chapter gives you the shortest practical path first, then the details for each place the process can stall.

The path to oxygen

If you already have a cluster headache diagnosis, start with the folder and prescription. If you do not have a diagnosis yet, start with Step 0 below. If you already have a diagnosis:

Download your regional oxygen folder. It contains the prescription templates, evidence summaries, official guideline excerpts, and appeal documents you can hand to your doctor, supplier, or insurer:
Then follow steps 1-3 below:
1. Ask your doctor to sign the oxygen prescription. Also hand them the prescription request letter: it contains useful information about the efficacy of home oxygen. And ask your doctor about treatments to use while you wait for the oxygen setup to be arranged.
2. Call the supplier before delivery. Confirm they will bring the right cylinder sizes, a non-rebreather mask, the correct regulator, and a demand valve if it was prescribed.
3. If anyone says no, ask for the reason in writing. A written reason is something you can answer, escalate, or appeal.

Support networks can save a lot of time because patients often know which local doctors, suppliers, forms, and wording actually work:

r/clusterheads and r/ClusterHeadaches subreddits
ClusterBuds Discord community
Clusterbusters forum
OUCH UK forum

Step 0: get a cluster headache diagnosis (skip if you have one)

This can be the slowest part of the path. Two things speed it up:

A short video of an attack. The restlessness, red or tearing eye, and one-sided runny nose are distinctive.
See a headache specialist, not a general neurologist. Peer groups keep informal lists of cluster-literate doctors and can point you to one in your area. Bring your diary (see below) and the video to your GP/PCP and ask for a referral to a headache specialist.

A headache diary also helps. We recommend using the myClusters app. Keep track of the following:

Attack timing and duration
Side-locked pain (one side of the head, always the same side within a bout)
Autonomic signs on the painful side (red or tearing eye, nasal congestion or runny nose, swollen eyelid)
Restlessness or agitation during attacks
Circadian pattern (time of day attacks tend to occur)
Bout pattern (time of year clusters tend to occur)
Response to triptans, oxygen, or other treatments, if you have tried them

Step 1: ask your doctor to sign the prescription

The goal of the appointment is a prescription the supplier will fulfill correctly. Start by handing your doctor the prescription request letter from the oxygen folder; it explains the case for home oxygen in about two minutes of reading, with the key guideline and evidence references already included.

The folder also contains two editable prescription templates: a non-rebreather mask version, and a demand-valve version. A demand valve releases gas only when you breathe in, and patients report attacks aborting noticeably faster with it (Goadsby et al., 2025).^[1] Pick the version you think your doctor will sign quickly. You can usually swap the regulator or add a second cylinder later without a new prescription, but switching to a demand valve generally needs a fresh prescription line.

The non-rebreather mask prescription

A workable prescription is short and precise about the equipment needed (Tepper et al., 2017).^[2] The version below is shown for illustration: use the editable copy in the folder when handing it to your doctor.

Header: Oxygen therapy for cluster headache
Instructions: 100% oxygen at 15 liters per minute through a non-rebreather mask for up to 20 minutes per attack, as needed.
Note (equipment): "One large cylinder for home use and a portable tank for work and leaving the house. Please include a full non-rebreather mask and tubing."
Note (medical necessity): "The oxygen therapy is medically necessary to abort cluster headache attacks and improve functioning. Oxygen is a guideline-recommended first-line acute treatment for cluster headache."

The prescription above is intentionally modest. It caps the regulator at 15 L/min rather than the 25 L/min the community generally recommends, and asks for a single large home cylinder rather than two. The reason is pragmatic: it is easier to get approved when you ask for the minimum medically defensible setup. Higher flow rates let you breathe in faster and deeper, which most patients report aborts attacks faster. Once this prescription is in place, we strongly recommend upgrading your equipment. See Upgrading the setup later below.

If you live in the US: Add the ICD-10 code for cluster headache (G44.0-, with the specific subcode reflecting episodic vs chronic and intractable vs not). Medicare requires a Standard Written Order (SWO) listing patient name, date, item description, prescribing practitioner, NPI, and signature. The US folder bundle includes an SWO example and an ICD-10 reference sheet.

Upgrading the setup later

Once you have secured your initial setup, we recommend the following upgrades:

Swap your 15 L/min regulator for one that can output at least up to 25 L/min. Some patients recommend a regulator that can go as high as 40 L/min. You can:
- Ask your supplier to swap it (often free or low-cost, especially with a supportive updated prescription)
- Buy a high-flow regulator privately and use it with your supplied cylinders
Get a second large cylinder for backup.

Step 2: call the supplier before delivery

The prescription is in your hand, but the supplier still has to fulfill it correctly.

Before they deliver, call the supplier and confirm:

They have the cylinder sizes specified on your prescription
They will deliver a non-rebreather mask / reservoir-bag setup, not a simple mask or a nasal cannula
- A non-rebreather mask is attached to a reservoir bag; a simple mask is not
They have the correct regulator
- If you are prescribed a non-rebreather mask setup: confirm the regulator can reach the flow rate on your prescription (e.g. 15 L/min). Some regulators max out at lower rates (6 or 8 L/min).
- If you are prescribed demand valve oxygen: confirm that the regulator will be compatible with a demand valve

Step 3: if anyone says no

First, ask for the refusal reason in writing. Then, escalate. Use this as the quick map; the detailed walkthroughs are below for doctor refusals, supplier refusals, and insurance or reimbursement denials.

Common escalation paths:

Doctor refuses → practice manager → (UK) ICB prescribing adviser → headache specialist or specialized clinic
Supplier refuses → manager → your doctor or insurance calling on your behalf → change supplier
Insurer denies coverage → internal appeal → peer-to-peer review → state-mandated external review

Ask support networks for help. This is especially useful when you need a supplier name, a doctor who understands cluster headache, a region-specific form, or wording that has worked for other patients.

What is inside the oxygen folder

The folder lets you make two arguments quickly, to whoever you're talking to: (i) oxygen is a guideline-recommended first-line acute cluster headache treatment, and (ii) it is medically necessary in your case. It helps with doctors, suppliers, and insurance appeals.

A pre-built bundle is available for your region:

US folder: includes the Medicare Standard Written Order example, an ICD-10 reference, and an insurance appeals letter
UK folder: includes a HOOF Part A guide (with Primary Clinical Code 18) and an NHS Scotland Right Decisions excerpt
Rest of the world folder: for everywhere else

Each bundle contains:

A prescription request letter you can hand to your doctor. It argues the case for home oxygen in two minutes of reading, with the key studies and guidelines cited.
Two editable prescription templates (non-rebreather mask, demand-valve)
A letter of medical necessity template for your doctor to sign
One-page summaries of the most-cited efficacy, demand-valve, and safety studies (Cohen 2009 RCT,^[3] Medrea 2022 meta-analysis,^[4] OUCH-UK 2025,^[1] Rozen & Fishman 2013,^[5] Mo 2022^[6])
A one-page summary of the relevant official guidelines (EAN, AHS, NICE, NHS Scotland Right Decisions, Medicare LCD L33797)

Add to the folder yourself:

A copy of your cluster headache diagnosis
Any prior failed acute treatments (with dates and outcomes, if you have them in writing)
Your insurance card or coverage details, if relevant
Your doctor's signed letter of medical necessity, once you have it. (The folder has the template; you add the signed version yourself.) This is often requested later in the process; worth flagging early.

If the doctor says no or hesitates

If your doctor is uncertain about prescribing oxygen for cluster headache, they likely don't know one or more of the following:

Oxygen is a first-line acute treatment in major guidelines (EAN, AHS, NICE, NHS Scotland)
Short cluster oxygen sessions (under one hour) carry little oxygen-toxicity risk in patients without specific oxygen-risk conditions; the main practical concerns are fire safety and cylinder handling
Oxygen is fast-acting and has no drug side effects, unlike triptans

What in the folder helps

The prescription request letter lays out the case for prescribing oxygen, written for the doctor to read in two minutes.
The guidelines summary shows oxygen is first-line in EAN, AHS, NICE, and NHS Scotland Right Decisions.
The evidence summaries cover efficacy (Cohen 2009 RCT,^[3] Medrea 2022 meta-analysis^[4]) and safety (Mo 2022^[6]), useful if the doctor questions either.
The prescription template gives the doctor pre-worded text to copy onto the script.
[US] The SWO example and ICD-10 reference show the prescriber what Medicare requires on a Standard Written Order.
[UK] The HOOF Part A guide tells the prescriber which form to fill and which clinical code to use (Primary Clinical Code 18).

If the doctor still refuses

Ask for the refusal in writing.

If you live in the UK: escalate to the practice manager, and then if needed to the prescribing adviser of your local Integrated Care Board.

If that doesn't move things, change doctors, or go directly to a specialist. A headache specialist or specialized clinic can usually do several things a GP/PCP can't:

Prescribe oxygen directly (in some regions, only specialists can; check the peer networks above for what applies locally)
Write a letter to your GP/PCP that helps them prescribe in the future
Write a medical-necessity letter you can attach to an insurance appeal
Sometimes, refer you to suppliers they already work with

To find a specialist, ask your GP/PCP, search recommended doctors/clinics online (Clusterbusters maintains a resource list), and ask peer groups for practitioners in your area. Many medical practitioners can prescribe oxygen, and in some regions nurse practitioners or specialist nurses can too. The peer networks above are the fastest way to find out who can prescribe locally.

After you have the prescription: dealing with the supplier

The supplier section above is your pre-delivery checklist. If something still goes wrong, handle it by whether the equipment arrived wrong or the supplier refuses to deliver at all.

When the wrong equipment arrives

Call the supplier and ask them to redeliver with the right equipment. Build rapport with the staff: they can sometimes swap regulators or supply larger cylinders informally. If the next delivery is still wrong, change suppliers, or ask your doctor or clinic for a referral to a better one. Some patients use welding oxygen while they switch (see "If the medical route stays blocked", below).

When the supplier refuses to deliver

Get the refusal reason in writing. Then respond to them depending on the reason they bring up:

They mention payment concerns → offer to self-pay, or ask your insurance for pre-authorization
[US] They cite outdated Medicare policy → send the current LCD L33797 and Policy Article A52514
They're unsure if they're authorized to deliver for cluster headache → send the guidelines plus a letter of medical necessity from your doctor
They object to prescription wording → ask the doctor to revise it

If they still refuse:

Escalate to a manager
Ask your insurance company to advocate with the supplier
Ask your doctor to call the supplier directly

If that fails, change suppliers (ask peer networks and your specialist or clinic for their referral list). Some patients switch to welding oxygen at this point.

If insurance or reimbursement says no

This section is mostly for patients in the US. In single-payer and similar systems (UK and others), reimbursement is usually handled as part of the prescription, so if the prescription went through, coverage typically follows. The rest of this section is mostly about US private insurance and Medicare.

Internal appeals, peer-to-peer reviews, and external reviews can take weeks or months. If you can't or don't want to wait for oxygen, consider paying out of pocket through a Durable Medical Equipment (DME) supplier (US self-pay is typically $200–400+/month). Some patients switch to welding oxygen (often less expensive than self-pay medical).

Get the denial reason in writing

The US folder bundle includes a pre-drafted insurance appeals letter that addresses the most common denial reasons:

Missing letter of medical necessity → use the template in the folder and ask your doctor to complete and sign it
"Not a covered indication" → cite LCD L33797 (Medicare) or NICE CG150 (UK), both in the folder's guidelines summary
"Experimental or investigational" → attach the Cohen 2009 RCT and AHS/EAN guidelines from the evidence and guidelines documents in the folder
Step therapy required → document failed alternatives (triptans, other acute treatments)

If you're still denied

Appeal again, with specialist support
Request a peer-to-peer review between your doctor and the insurance medical director
US plans typically have a state-mandated external review available after internal appeals are exhausted
Ask your doctor to appeal on your behalf where the plan allows

Treatments to use while you wait

Setting oxygen up can take weeks or months. Other treatments can reduce suffering in the meantime. Below are some options to discuss with your doctor early, so you're not unmedicated when an attack hits. Have a look at our treatment overview guide for the full set of options.

Treatment	What it does	Who prescribes	When to use
Subcutaneous sumatriptan	Fastest non-oxygen abortive (~10-15 min); level A evidence	GP/PCP or specialist	Per attack; the standard acute abortive together with oxygen
Intranasal zolmitriptan or sumatriptan	Slower-acting triptan alternatives	GP/PCP or specialist	When subcutaneous isn't tolerated, available, or affordable
Vaped DMT	Aborts attacks within seconds at low doses; widely reported as the fastest available abortive	Not prescribed; patient-administered	Per attack, as an alternative when oxygen isn't available or isn't effective
Other abortives, such as DHE or intranasal lidocaine	Slower or weaker than sumatriptan, but useful when triptans are contraindicated or have failed	Specialist (mostly)	Per attack, as a backup when triptans aren't an option
Bridge treatments (oral prednisone taper, or greater occipital nerve block)	Suppress attacks for days to weeks; can break a bout while a long-term preventive ramps up	GP/PCP or specialist (prednisone); specialist (nerve block)	Bout in progress, preventives not yet at full dose

Note: frequent triptan use can lead to more frequent or more intense attacks.

For severe attacks during the wait, the ER is a fallback. Most can give subcutaneous sumatriptan or 100% oxygen by non-rebreather mask on the spot. Bring documentation of your diagnosis to avoid misunderstanding.

If the medical route stays blocked

Welding oxygen is chemically the same gas as medical oxygen and is often cheaper than self-pay medical oxygen. However, there is no medical oversight and you will have to handle the equipment side yourself. See the welding-oxygen chapter for the practical setup, regulators, masks, and safety.

Privately bought regulators and demand valves pair with welding cylinders to give you the same equipment a well-set-up medical prescription would. Some patients run this configuration permanently.

At a glance: barriers and escalation

The table below is a printable summary of the chapter. Each row maps a barrier to a first action, the next step if that fails, and a last resort.

Barrier	First action	If that fails	Last resort
No formal cluster headache diagnosis	Keep a detailed headache diary: attack timing and duration, side-locked pain, autonomic signs, restlessness, circadian and bout patterns	Bring the diary to your GP/PCP and ask for a specialist referral; document response to triptans or oxygen if you've tried them	Self-refer to a headache specialist or specialized clinic; ask peer groups for recommended practitioners
Doctor doesn't know oxygen is first-line, or doesn't know how to prescribe it	Bring the oxygen folder: official guidelines, key RCTs, a prescribing guide (e.g. Tepper et al.), and region-specific forms	Ask for refusal or hesitation in writing; UK: escalate to the practice manager, then the ICB prescribing adviser	Change GP/PCP; consult a headache specialist or specialized clinic who can prescribe directly or write to your GP
Long wait for prescription, supplier delivery, or insurance approval	See our treatment overview for options; ask your doctor about bridge and abortive treatments to use while you wait	For severe attacks, go to the ER. Most can give subcutaneous sumatriptan and on-site 100% oxygen with a NRB mask	If the wait is unmanageable, set up welding oxygen
Supplier refuses to deliver	Get the refusal reason in writing, then respond by reason.	Escalate to a manager; ask your insurance to advocate with the supplier; ask your doctor to call the supplier directly	Change suppliers (ask peer networks and your specialist or clinic for their referral list); switch to welding oxygen
Supplier delivers inadequate equipment (cylinder too small or unspecified, simple mask instead of NRB, no demand valve, wrong regulator)	Tighten the prescription so it leaves no wiggle room: specify cylinder size, NRB mask, regulator type, and demand valve if applicable	Build rapport with supplier staff; they may informally swap regulators or supply larger cylinders	Change suppliers; ask your doctor or clinic for a referral to a better one
Insurance denies coverage	Get the denial reason in writing, then respond by reason.	Appeal again with specialist support; request a peer-to-peer review between your doctor and the insurance medical director	Pay out of pocket or use welding oxygen (often cheaper than self-pay medical oxygen)

References

↩ Goadsby PJ, et al. (2025). Patient-experience survey comparing high-flow oxygen with demand valve oxygen for cluster headache. Cephalalgia Reports. Link
↩ Tepper SJ, Duplin J, Nye B, Tepper DE (2017). Prescribing oxygen for cluster headache: a guide for the provider. Headache. Link
↩ Cohen AS, Burns B, Goadsby PJ (2009). High-flow oxygen for treatment of cluster headache: a randomized trial. JAMA, 302(22), 2451–2457. Link
↩ Medrea I, Christie S, Tepper SJ, Thavorn K, Hutton B (2022). Network meta-analysis of therapies for cluster headache: effects of acute therapies for episodic and chronic cluster. Headache. doi:10.1111/head.14283
↩ Rozen TD, Fishman RS (2013). Demand valve oxygen: a promising new oxygen delivery system for the acute treatment of cluster headache. Pain Medicine. doi:10.1111/pme.12055
↩ Mo H et al. (2022). Oxygen therapy for headache disorders: a comprehensive review. Pain Physician. Link