People who live with cluster headache are your patients whether you know it or not. The fact that most of you know very little about our disease is appalling and disheartening. By the time we get to you, we have already been through hell just trying to get a proper diagnosis and a valid prescription for oxygen. It takes an average of eight years just to get to this point. By the time we get to you, we’re exhausted and desperate. We need your compassion and understanding. Instead we’ve often been met with ignorance, stigma, and a mountain of inflexible red tape that isn’t relevant to our illness. Your outdated policies have made life unreasonably difficult for people with cluster headache and it needs to stop.
You don’t seem to understand our urgency. If you’re willing, it will only take a few moments to enlighten you.
Our lives really are on the line.
They don’t call it “suicide headache” for nothing. You will be hard-pressed to find a single person living with cluster headache who hasn’t seriously considered suicide at one point or another. The pain is so excruciating that it defies words. Your delays because of bureaucratic nonsense just might cost one of us our lives.
Oxygen is our lifeline.
We don’t need it to breathe, but we do need it to live. Using oxygen allows us to abort attacks within a few minutes. Without it, many will endure hours of unimaginable torture. Because attacks frequently occur in the middle of the night, our sleep is disrupted, too. Oxygen allows us to quickly stop the attack and get more hours of sorely-needed shut eye.
We will do whatever it takes.
If we sound desperate, that’s because we are. Because it takes so very long to get diagnosed, we’ve been suffering for years. There’s a good chance we’ve lost everything already and now we are hanging on by a thin, fraying thread of hope. You can strengthen or destroy our hope in seconds.
Our need is simple.
We need assorted sizes of oxygen tanks, a good quality non-rebreather mask, several lengths of tubing, a regulator that will deliver at least 15 lpm, and a safe way to store and transport the tanks. Some of us will need more tanks than others, depending on our attack frequency, but the basic setup is the same.
Create a fast, efficient fulfillment process.
Know the basic set-up requirements for cluster headache and have it ready to go quickly. Streamline your process so that patients in an active cycle are fast-tracked through your system. Make it part of your business model to deliver oxygen to cluster headache patients THE SAME DAY the prescription is received.
We all need:
- Non-rebreather mask
- Several yards of tubing
- Regulator that delivers up to 15 lpm
- Oxygen tanks
- Safe storage and transport methods
- Instructions for optimal use specific to cluster headache
It may not be covered by insurance.
That doesn’t mean that it isn’t medically necessary. If we have a valid prescription, then what does it matter who pays the bill? I’ve never understood why so many of you refuse to accept our cash, check, or credit card. One would think that you’re in business to make money. Turning away paying customers with cash in hand seems like a really bad way to make a profit.
Monthly rental plans don’t work for all of us.
Most of us have episodic cluster headache. Our attack cycles can last anywhere from 1 week to 3-4 months. When it’s over, we have no need for oxygen until the next cycle. The time between cycles could be a month, a year, or even decades. To require us to agree to a monthly rental plan that continues indefinitely whether we need it or not is a waste of your time and our money.
Sure, a monthly plan with scheduled pick-ups and deliveries makes a lot of sense for those of us with the chronic form of this disease. But for the vast majority of us, renting by the tank is a more affordable and reasonable solution. That way we pay for what we need, when we need it. Give us the option to purchase our own regulator, mask, tubing, and cart. That allows us to quickly and efficiently rent just the tanks we need during an active cycle. Please, give us more options instead of forcing us to pay for something we don’t necessarily need to use all of the time.
Be open to short-term customers.
Traveling by air with cluster headache is challenging. Compressed oxygen tanks are not permitted aboard planes and oxygen concentrators don’t deliver a high enough flow rate. If we manage to get through the flight itself, we still need access to oxygen tanks at our destination. This often means renting tanks from a new supplier. Because many of you have a subscription-based business model, the idea of renting a handful of tanks to a short-term patient is foreign. As long as we have a valid prescription, why do you care? Please help us survive business trips and enjoy our vacations by offering short-term rentals.
We know more than you.
Face it – we know more about our condition and need for oxygen than you do. We probably know more about it than our doctor, too. That’s what happens with rare diseases. Accept that fact and don’t argue with an experienced cluster headache patient about the quantity and size of tanks, flow rate, duration, mask type, or anything else. We really do know what we are doing.
New patients might not know how to use oxygen for best results. Their best source of information won’t be you or their doctor. Patient support groups are the best source. If you haven’t already partnered with a patient support group, then you need to do so right away.
If you’d like to know more about how you can best meet the needs of cluster headache patients, please contact me directly or visit The Cluster Headache Support Group.
A 16-year veteran of cluster headache