High-Flow Oxygen is Exhausting!

High-Flow Oxygen is Exhausting!

Like many with cluster headaches, I use 100% high-flow oxygen to abort the attacks that sneak past the carefully guarded gate of my preventive treatments. The good news is that this strategy works almost every time. The bad news is that doing so is exceedingly exhausting. As much as I appreciate a non-drug, no-side-effect option, I always dread using it. I resist because I know how much it will drain me. You see, aborting a cluster headache attack is not a passive activity.  I can’t just kick back, relax, and gently breathe through a mask. Quite the opposite, I must be actively engaged for this treatment to work.

When the attack starts

It begins with a feeling of heaviness in my right eye, as though someone attached a lead weight to my eyeball. That heaviness is quickly joined by searing heat, like a hot poker stuck in my eye. Within moments, the weight and heat are overpowered by a stabbing pain more unbearable that anything I’ve ever experienced.  Untreated, the pain is so intense that I beg for death to make it stop.

Before it gets that far, I pull the tank close to me. The process begins by opening the valve with a special plastic key. I turn the knob several times to the left until it stops. Next, I twist the dial up to 15.  Oxygen begins to flow from the tank into the green bag attached to the mask. Once the bag is full, I place the mask against my face to form an air tight seal and begin taking deep, steady breaths. Over and over again, breathing in deeply through the nose and exhaling from the mouth.

Time moves slowly

The minutes tick by slowly as I keep checking the time. Experience has taught me that nothing improves for at least 10 minutes. I will never be able to explain how I manage this calm, measured breathing when my eye ball feels like it’s going to explode. I just do it. It must be done. If I want this torturous nightmare to end, I must keep going. There is no other alternative for me. So I keep breathing and watching the clock, praying for those agonizing 20 minutes to quickly come to an end.

My last resort

In the unfortunate event that this strategy does not work, In have one more treatment to try. Sweating profusely, shaking uncontrollably, and fighting off searing pain, there is one last hope. I can draw a 1 mL solution (30 mg) of Toradol into a syringe and stab myself in the leg. For years I could not manage this feat without help. Family members were enlisted to actually inject the syringe. In a desperate moment this year, I found myself alone in the middle of a horrible attack. That was when I finally summoned the courage to stab myself in the leg.

I’d rather have a migraine attack.

When I get a migraine attack, I take medicine that stops it quickly. I may still have some residual symptoms, but can usually be productive when it’s over. That’s not the case with cluster headache attacks. When the whole ordeal is finally over, I am completely spent.  The attacks may be short-lived, but can happen over and over in a single day. If I get more than one attack per day, the exhaustion from this process is magnified, taking days to fully recover. It’s like running a marathon only to get back up and do it again the same day, again and again. I appreciate that breathing in high-flow oxygen stops the attack in 20 minutes or less. Without it, the pain would rage on for up to 3 hours. I just wish that I could find a better abortive solution that didn’t wipe me out so much.

I need a new doctor.

Many people ask me why I don’t use sumatriptan injections. I don’t because doing so in combination with the triptans I already use to treat Chronic Migraine would dramatically increase my risk of developing Medication Overuse headache. I know there are other available options. The challenge is finding a headache doctor who knows enough to prescribe these faster-acting abortives. That’s going to be a tall order in this town. I’ve already begun my search, but my husband and I are fully aware that my next option involves traveling across country to a major headache center. Regardless, I have to find a more appropriate treatment partner. My current doctors are amazing people, but they do not possess the very specialized training to treat such a rare disease.

Dear medical oxygen suppliers…

Dear medical oxygen suppliers…

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.

Yours truly,

A 16-year veteran of cluster headache


Learn more…

Research Series: Oxygen
Cluster Attack: The Way it Really Happens
Putting Profits Before Patients

Putting profits before patients

Putting profits before patients

Ask any cluster headache patient and they will tell you that health insurance companies rarely cover the cost of oxygen. It is baffling why such an inexpensive, safe, effective treatment is denied. Most of us have learned to work around this issue by paying for tank rentals out-of-pocket or making arrangements to use welder’s oxygen. I’ve never needed to source welder’s oxygen because I’ve always had access to affordable tank rentals from understanding DMEs. That all changed last week.

Backstory

A few years ago I had to find a new oxygen supplier because of a move. At the time, there was only one preferred provider on my health insurance plan. That provider was Apria Health Care. Initially it seemed like a good move. I had chronic cluster headaches and attacks were hitting 3-5 times every week. Apria delivered 6 “E” tanks and my insurance covered the cost. A year later, my insurance provider changed to a Medicare Advantage plan with Humana, which does not cover oxygen for cluster headaches. I had emptied 5 of the 6 tanks, but didn’t bother to reorder. In early 2015, Botox treatment put me into a 7-month remission followed by brief cycles just 3 times a year. I really didn’t need that much oxygen anymore. Based on previous experience, I assumed I would be able to rent tanks when needed without any problems.

Fast-forward to October

When we moved into our new house last October, I called Apria to request a pick-up of the used tanks and to change my address. Because my cycles are brief, I do not require a large quantity of oxygen. That last “E” tank  got me through 3 attacks on Veteran’s Day. I had just enough oxygen left in the tank to treat one more attack.

Last week

Knowing that the next cycle would be coming soon, I requested a new delivery last Tuesday. At the time of my request, I was informed that they had no record of me as an oxygen patient. I assumed this was a clerical mistake and asked my neurologist to contact them with a new prescription. As luck would have it, my next cycle hit before the tanks could be delivered. I used the last bit of oxygen and prayed the next round would wait until new tanks arrived the next day.

Still waiting

It was a Friday morning when I called Apria to find out when the tanks were scheduled to arrive. That is when I was informed they were waiting on my doctor to fax them the results of my oxygen saturation test. The next cluster attack was beginning to ramp up, so I was already on edge, impatient, and beginning to panic. I needed that oxygen right away! I argued with the person on the other end of the line, demanding to know why in the world O2 sats were needed for a neurological condition that had absolutely nothing to do with lung function. All I got in response was a terse, “That’s what your insurance requires.”

Sharp stabs seared through my right eye as I fastened an ice pack tightly in place with an ace bandage. I could feel the adrenaline coursing through my body. Involuntarily, I began pacing the floor and taking quick, shallow breaths. Desperate, I dialed the number of my care coordinator at Humana hoping she could help expedite the oxygen delivery. My bad luck turned worse when I learned that she was out of the office. All attempts to reach anyone else who might be able to help resulted in being transferred from one extension to another until the call was eventually dropped.

Burning tears were streaming down my face as I desperately dialed Apria once again, hoping to speak to someone with just an ounce of sanity and compassion. By this time the pain was so intense that I had lost all ability to remain calm, rational, and diplomatic. The call was an epic failure. It was time to get my husband involved. The minute he picked up the call, he could hear the panic in my voice and knew I was out of my mind in pain. “I’m on my way,” he reassured me.

In the minutes after that final call, I could feel the beast loosening its grip on my head. Taking in a deep breath, I realized the attack was beginning to subside. My head now hurt from the migraine that always followed a cluster attack, but at least I could think a bit clearer. I mentally assessed the situation.

  • No one at Humana could help.
  • My neurologist was out of the office for the weekend.
  • I had one more option. Maybe my primary care doctor would help. If I could find another DME who was more sympathetic to cluster headache patients, perhaps he would be willing to order a small amount of O2 to get me by until my neurologist was back in the office on Monday. I called the office and spoke to his nurse.

Rescued!

By the time my husband arrived home he was able to take over. He grilled the new DME to verify there would be no problems with them accepting payment, then made arrangements with my doctor to have a prescription faxed to them. Within the hour he was able to pick up 2 full “E” tanks for a meager $24.

Fallout

It’s now Monday morning. I’ve been on the phone with Humana, Apria, and my neurologist. Humana says that as a Medicare Advantage plan, they do not cover O2 for cluster headaches. I knew that and wasn’t surprised by their answer. That’s what I’d been telling everyone at Apria all along. Apria says they made a mistake and that Humana does cover oxygen for cluster headaches, BUT…they never accept direct patient payments, AND…they rent their tanks for $100 per month. If by some miracle, Humana did agree to pay for the tanks, I’d still be out $20 every month PER TANK just to have the damn thing available “just in case”. Now why would I agree to that when I just paid a ONE-TIME $24 fee for TWO “E” tanks that I can keep as long as needed until they run out?

Fired due to incompetence and woeful lack of compassion.

Apria has made a business decision to put profits and bureaucratic “red tape” before patient care. This is unacceptable. Before I hung up, I told them their customer service SUCKS and that as a headache disorders patient advocate, I’d make sure every cluster headache patient I knew would learn how TERRIBLE they are. I promised to do everything in my power to make sure they never got another DIME from any headache disorders patient. There’s only one way to teach these money-grubbing bastards a lesson. BOYCOTT Apria, file complaints with your insurance company, and tell everyone you know that they are NOT cluster headache friendly.

Cluster headache-friendly DMEs

On the other hand, I’ve discovered two marvelous DMEs who understand cluster headache patients and will bend over backward to accommodate our needs. If you are in northeast Kansas and need oxygen for cluster headaches, please do business with LinCare, Inc. or Criticare Home Health Services, Inc. Not only will they offer you affordable O2 tank rentals, but they will outfit you with regulators, masks, carts, and anything else you need AND teach you how to use the equipment for maximum benefit.

Cluster attack: The way it really happens

Cluster attack: The way it really happens

When I tell people I have been diagnosed with cluster headaches, they will try to relate by telling me about their migraines. They will often share how they avoid one simple food or take one medicine that keeps their migraines under control. I am truly happy this is possible for anyone. Sadly, for me, that approach has never been effective. No preventive yet has been able to bring down the frequency of to fewer than three per week for more than a month or two. The longest I have ever gone between attacks is 16 days except for one brief three-month break last fall.

To complicate matters, I have also been diagnosed with migraines which are triggered by cluster attacks. While I dislike the “my pain is worse than your pain” competition that often occurs in the headache disorders community, I don’t know how else to describe my experience except to compare my own cluster attacks to my own migraine attacks.

cluster_quoteWhat follows is a description of my subjective experience with both headache disorders.

I’ve often said I’d rather have a migraine every day than one more cluster attack. If you only get migraines, this must seem like a ridiculous statement. Here is my perspective. The worst migraine I have ever experienced is about 3 (on a 10 point scale) when compared with a typical cluster attack. All the vomiting, throbbing pain, light and sound sensitivity, and vertigo are just a little warm-up when compared to the agony I face during a cluster attack. Like migraine, cluster attacks in one patient may be easily controlled while another patient’s symptoms are treatment-resistant. In regards to both headache disorders, I tend to fall somewhere in the middle.

Here is what happened during yesterday’s cluster attack:

For three days prior to this particular attack, I’d been dealing with extreme vertigo that caused me to walk into walls and pass out if I moved too quickly. My doctor thought my preventive was causing the problem, so he asked me to taper back to the last dosage level to see if the symptoms go away. This particular preventive has been more successful at controlling cluster attacks than migraines, so I am sure that the lower dose also lowered the threshold needed to induce this latest attack.

headache busterYesterday afternoon I felt the familiar twinge above my right eye that warned a cluster attack was on its tiger balmway. Hoping to stop it early, I applied Tiger Balm and used a cayenne-based nasal spray, then waited to see if my efforts were successful.  An hour later, the threatened attack did something strange that had never happened before. Sharp stabbing pains started bouncing from side to side and front to back. I would normally have assumed the cluster attack was triggering a migraine, but I had no light or sound sensitivity, no nausea, and I couldn’t sit still.  That uncontrollable urges to scream, pace, and rock are hallmarks of a cluster attack.

handheld massagerI grabbed my hand-held massager and some fresh batteries. The vibration will often stall an attack. I E tankworked my head over for at least 30 minutes while I rocked, paced, and cursed under my breath. Yet the attack would not subside. Just as everyone in my family disappeared, the peak hit and I could no longer contain myself. I broke out in a cold sweat and started cursing out loud as I grabbed my oxygen tank. With shaking hands I fumbled with the controls, crying, screaming, and rocking away. What seemed like hours was really only a few minutes before I could breath in the sweet relief of 100% pure oxygen. I inhaled so deeply that I flattened the three liter reservoir faster than the max flow rate could fill it up. In about five minutes I was able to slow my breathing down to a reasonable pace. After 20 minutes of frantic oxygen inhalation, the piercing torture that brought out the wild animal in me changed. The piercing fire of a explosion releasing the mythical hounds of hell transformed into the pounding rumble of a freight train. Still, it was significant enough relief to slow down the rocking.

ice bagRealizing the attack wasn’t really over, I grabbed an energy drink, a large ice pack, and my massager. red-bull I stepped outside for a change of scenery where I rocked on the porch, banging my head against the railing for relief between chugs of energy drink. My husband was in the driveway working on our daughter’s car. He looked up and asked, “Cluster?” I nodded and snarled back with cynicism, “You missed the worst of it.”

He has learned to take these attacks in stride and give me a wide berth ever since the time I threw a tank across the room because it ran out at the peak of an attack.

injectionI could feel the attack ramping up again and knew I had only moments to avoid the emergency room. With my last bit of sanity, I sterilized a spot on my leg and drew up the last millilitre of my precious Ketorolac. I then called for my hero son to give me the injection as my hands are too shaky to self-inject safely. He is such a pro at it and never lets me down. This time was no exception. A minute later, I felt the relieving sting of medicine in my leg muscle as it chased away the last remnants of agony.

The attack lasted a little over two hours.  That seems like nothing compared to days of migraine. Yet in the middle of the attack it felt as if time stood still. It still feels much more lengthy than the six hour migraine that followed. The migraine kept me up past 3:00 a.m. with cold sweats and vomiting even though I took my abortive and anti-nausea medicines at the first sign.

If you have migraines and are unfamiliar with cluster headaches, you might be wondering why I didn’t take an abortive at the first sign of pain. What you may not realize is that I did use abortives right away. Oral medicines are usually ineffective against cluster attacks because they take too long to metabolize. Tiger Balm, Cayenne spray, energy drinks, oxygen, and ketorolac injections are abortives for cluster headaches. They just didn’t work very well this time. Even so, without these tools, the attacks would have kept coming over and over again until my willpower failed and I begged for relief any way I could get it.

This is the reality of a cluster attack. “Headache” doesn’t even come close to describing it. Pure torture is more like it

The courage of vulnerability

Courage

Today’s prompt: Watch The power of vulnerability by Brené Brown. How can you use what she says to help you put your dreams into perspective that leads to action?

The road to belonging and happiness starts with vulnerability. Impossible to be our authentic selves without vulnerability. Brown explains it like this,

…speaking honestly and openly about who we are, about what we’re feeling, and about our experiences (good and bad) is the definition of courage.

We all want to break the stigma that follows headache disorders. However, the only way to challenge people’s perceptions is to give them a glimpse into the reality of our fight with headache disorders. This can be frightening and embarrassing. Because I believe in leading by example, I’d like to take today’s challenge as the opportunity to be truthful and vulnerable first.

Below is a photograph I never thought anyone would see. However, I took it because I thought it was important to have a record of what it is like to experience a cluster headache. This was taken in the early moments of an attack.  Ice and heat make the pain worse, so I can’t treat a cluster attack like I do a migraine. The vibration of this hand-held massager helps to dull the pain while I prepare my oxygen tank and mask.

it_begins

The next photo is of me using my O2ptimask and O2 tank to abort an attack.  If you look closely, you can see that my eyes are watering and bloodshot. You can also see that my forehead is wrinkled up in pain.

clusterattack2

This is me at my worst. Nothing I have experienced comes close to the agony of a cluster attack. I can’t sit still. I stop caring about what I do or say. I break out in a cold sweat and am unable to control the urge to take off my clothes.  I pace, rock, bang my head, and curse unrestrained. This can go on for up to 3 hours, ease up for 15 minutes, then start all over again as often as 3 or 4 times a day for up to 5 days every other week.

There is no cure for cluster headaches. The treatments are minimally successful and full of side effects. Prednisone can sometimes break a cycle, but it causes weight gain, insomnia, anxiety, poor thinking, restlessness, increased appetite and cancer if used too often. Verapamil is frequently used as a preventive. It can cause constipation, fainting, vertigo, low blood pressure, and heart blocks. Patient must have frequent EKGs to make sure the heart is coping well.  Topamax is also used as a preventive. It can cause glaucoma, kidney stones, dehydration, electrolyte imbalances, memory loss, and cognitive impairment. The one bright side is that high-flow oxygen is an effective abortive for most patients. When used properly, it is very safe.

Here are some examples of the stigma I face as a result of cluster headaches:

  • When they see my O2 tank, people assume that I have COPD as a result of smoking.
  • Because the attacks usually happen in the early morning hours, I am rarely out in public when one starts. As a result, people assume I am exaggerating the intensity of the pain.
  • Because I also experience migraine attacks, doctors and lay people assume these are “just migraines” and can be treated like a migraine.
  • Bright and flashing lights are strong triggers so I often wear sunglasses or shield my eyes from flashing lights. I get accused of “attention-seeking”.
  • People (including my family) have trouble understanding how someone can be in that much pain yet no doctor can find the cause or fix it. Many times I am forced to respond to, “Have they found out what’s causing those yet?” No answer ever seems good enough.
  • Early on, few doctors would accept the diagnosis because I am female, non-smoker who doesn’t drink and has never used illegal drugs.  Many doctors still believe that only male smokers who drink excessively and/or use street drugs can get cluster headaches. It is viewed as a problem that is caused by patient misbehavior. Patient-blaming is rampant.
  • I have to take a lot of supplements and preventive medications in order to keep these attacks under partial control. Without these treatments, I would have attacks almost every day. Many people have accused me of “taking too many pills” or lecture me about changing my diet. I have no dietary triggers for cluster headaches. My triggers are bright flashing lights, loud sounds, chemical smells (tar, asphalt, incense, bug and weed killers, gasoline, burning wood, etc.), and alcohol.
  • When oxygen fails, I must seek emergency medical help. The first thing the nurses do is hook me up to their oxygen at a super-low flow rate with a crappy mask that leaks and then get frustrated when I tear it off and ask for a IV. They think I am being uncooperative and drug-seeking. What I want and need at that point is IV Solumedrol (steroids) and Dilaudid. Nothing else works. I scream, curse, cry, and am otherwise a “bad patient” when in reality I have absolutely no control over my behavior. I am so delirious with pain that I must have an advocate with me to explain what I need.

Whether it’s cluster headache, migraine, or some other headache disorder, we all experience our own form of torture. The only way to fight stigma is with the unadulterated truth.

Do you have the courage to show the world what you are really like in the middle of an attack? 


The 2014 Migraine and Headache Awareness Month, is dedicated to Dreaming of a World without Migraine and Headache Disorders. The 2014 Migraine and Headache Awareness Month Blog Challenge is a project of American Headache & Migraine Association.


My silent, secret war

My silent, secret war

It’s 3:00 a.m. when I open my eyes. My right eye feels heavy and hot. If I move my head too quickly, burning stabs sear through my temple like lightning bolts. I fumble around in the dark for remedies I had nearly forgotten. I try so hard to not wake my sleeping husband  as I stumble, walk into furniture, and drop precious ice packs and a bag full of medicine as I make my way out of the bedroom, down the hall, and finally drop everything on the sofa. The burning pain in my eye blinds me as acidic tears roll down my cheek. I grab a cold can of grape-flavored energy drink and press it into my eye socket for a moment before opening it.

“Ouch! That’s too cold.” I complain as I press a hot pack to my temple. It only takes moments to realize that heat is not helping either. Pressure feels the best, yet I can’t seem to press hard enough to chase away the fire. I pace about, desperately longing for the sweet relief usually brought on by the strong flow of cold pure oxygen.

“Damn it! Why did I wait so long to ask the doctor for a new supplier? I brought this on myself. I should have known better. I was just asking to get hit hard.”

“STOP IT!” I scold myself in a silent scream.

I take a deep breath and try to wrap the velcro ice pack tighter around my head. I lie back against a throw pillow and take a deep cleansing breath.

“Get up. MOVE.”

I obey the disembodied voice that echoes from deep within the saner recesses of my mind. In the stillness of early morning I am not sane. The searing pain drives me to madness. In my solitary hell I lose all inhibitions. I rock and pace, swinging myself from side to side, cursing at the pain to stop. I almost believe the battle is lost as I stretch my nearly naked body flat on the cold tiles of my kitchen floor. I roll from side to side in an even rhythm, finally crawling to the sliding glass door where I press my face against its cold, flat surface. This momentary relief is broken by the crash of yet another lightning strike within my head. A low gutterral moan escapes from my lips.

If I did not know the truth, I might easily be convinced that all the demons of hell had descended upon me.

“Demons might be easier,” I smirk with a biting sarcasm I have learned to embrace.

I wonder how much longer I can endure. It’s such a strange thought that I chuckle out loud, “Since when has this beast ever given me the option to walk away?”This torment burns like a wildfire for nearly 3 hours, hitting screaching high notes that explode like napalm. With each sour note I suppress the urge to cry out. I pull my hair with equal intensity to counterbalance the raging fire within. The stabs come stronger and faster.

Just when I think the next volley will be the end of me, the fire cools a bit. A sudden chill sweeps over me as my body relaxes from pure exhaustion. Grabbing a blanket, I recline back and begin to breathe again. My right eye and temple feel bruised. The warmth of a heated rice bag feels good on my tender scalp. The fire within is slowly burning itself out.

I drift off in an exhausted sleep just before my family wakes for the day.

The impossible has happened

The impossible has happened

September 3, 2013 was the day I last used Oxygen to abort a cluster headache.

Since that day I have experienced 9 “shadows” — a migraine-level pain, warmth, tearing, and eye drooping in the eye that normally experiences attacks. These “shadows” have been eliminated using a combination of energy drinks and Tiger Balm.

And now, after 14 days of nothing, my neurologist changes my diagnosis to Episodic Cluster Headache.

U-N-B-E-L-I-E-V-A-B-L-E

Who would have thought this would actually happen to me?

Well it did, and it can happen to you, too.

It probably won’t happen to you exactly like it worked for me. Each of us have our own path. We take our own journey. I can say that the first step toward relief started with an accurate diagnosis and treatment by a qualified headache specialist. Without that, I’d still be stumbling around in the dark, waking my family as I bang into my oxygen tank.

I’m no fool. I know the Beast will probably visit again. So I’m prepared. I still have plenty of energy drinks, Tiger Balm, Cayenne spray, Oxygen, and Toradol injections. I won’t stop taking the Verapamil every day as prescribed. And I certainly won’t push it by drinking alcohol, although on stressful days I do occasionally miss my Sour Apple Smirnoff.

Still, I don’t miss those 3:00 a.m. wake-up calls.

Research series – Oxygen

Research series – Oxygen

What is it?

Believe it or not, breathing 100% pure oxygen is a very effective way to stop a cluster attack in it’s tracks. This treatment won’t prevent attacks, but in most cases it will stop them in pretty short order. If you haven’t tried oxygen and you get cluster headaches, it’s well worth your time and money to give it a try. It’s safer than other pain relief options and a lot cheaper, too.

How do I use it?

Like any other abortive, oxygen should be used at the first sign of an attack. Many cluster headache patients report lower intensity discomfort in the same location as a full cluster attack. Most call it a “shadow” and describe it as a heavy, warm feeling. The level of pain can vary from mild discomfort to an intensity similar to that of a migraine. “Shadows” frequently hang on for several hours and can be the precursor to a cluster attack. Using oxygen for a “shadow” can be as effective as aborting a full-blown attack. Just as with migraines, don’t wait until the pain is unbearable to treat it. Get “ahead of the pain” by using oxygen frequently. Unlike other pain relief options, oxygen is not habit-forming or addictive and will not contribute to the development of Medication Overuse Headache (i.e. “rebound”).

Where can I get it?

Medical grade pressurized oxygen is available by prescription only. You will need your doctor to write a prescription and submit it to your local medical supply company (often referred to by its acronym “DME” which stands for “durable medical equipment). In most cases, insurance will pay for it. However, medical grade oxygen is inexpensive enough that many people find they can afford it even without insurance.

What type of equipment do I need?

At minimum you will need a full O2 tank, a regulator that goes up to 15 lpm, tubing, and a non-rebreather mask.

Oxygen tanks are rented, typically for $10 – $15 per tank. When the tank is empty, just return it to the supplier and pay for a new full one. Some suppliers offer delivery services to your home, so ask if this is an option. There are several different sizes available. The most common sizes available in the U.S. are E and D.

E tankE tanks are about 24 inches high and 6 inches in diameter. They hold enough pressurized O2 for portableabout three 20 minute treatments at 15 lpm. They can be portable if placed in a wheeled cart.

D tanks are about 18 inches high and 3 inches in diameter. They hold enough oxygen for one 20 minute treatment. The advantage to a D tank is that it is easy to carry and great for traveling. The down sides are that they are only good for about one treatment and they usually cost as much as the larger E tanks.

If you are getting several hits per day over a long time period, it might be a good idea to ask your doctor or DME supplier about the availability of a larger, stationary tank.

regulatorYou can rent a regulator, but it is often cheaper to purchase one. Your insurance may or may not cover the cost of purchasing one. Many people are able to find one online for less than $100. A regulator is metal and is very durable. I’ve had the same one for 6 years and it still works like a charm.

The masks are inexpensive (around $3) and usually provided with your regulator and first tank. The down side is that these masks are often ill-fitting and cause leaks, preventing you from breathing in 100% pure oxygen. If you don’t get relief using an inexpensive non-rebreather mask, you may want to consider an O2ptiMask or other specialty mask design for Cluster Headaches. These masks are more expensive ($20 – $30) — many patients discover they are well worth the investment. With a specialty mask, you get a better seal so you are able to breath in 100% pure oxygen without leaking in room air. Treatment is often more effective, too.

NOTE: Some DME suppliers are not familiar with using oxygen to treat Cluster Headaches. They will often give you a nasal canula and a low-flow regulator instead of a non-rebreather mask and a high-flow regulator. Some may even try to rent you a concentrator instead of a regulator. You may have to insist on the correct mask and a regulator that will go up to 15 lpm. If your equipment doesn’t look like the images on this page, push back until you get the right equipment.

Tips & Tricks for successful use:

  • keyandlightMost O2 tanks require a plastic “key” to open the valve. These are small and easily lost. If you have a tank cart, attach the key to the cart using a caribeaner. That way you will always have it when you need it.
  • Cluster headaches love to attack in the middle of the night. Save yourself the frustration and attach a small flashlight to the cart using the same caribeaner that attaches your key. This will allow you to see everything clearly to adjust your regulator settings as well as making sure the tank is completely turned off when you are finished so you don’t waste that precious O2.
  • Buy a mask without straps or cut them off. You should not use O2 for more than 20 minutes at a time without breathing in regular air for at least 5 minutes. Without straps, you can safely use your tank without concern of falling asleep with too much oxygen flowing for too long.
  • Some people get better results with deep breaths or quick, shallow breaths. Experiment to find the right breathing pace for you. (I tend to take deeper breaths in the beginning with slower breaths as the attack subsides).
  • Ask for the longest tubing available. Cluster headaches give us the urge to pace, rock, and move. Give yourself the option to move as much as possible while still getting the benefits of oxygen.
  • Make sure you get more than one tank. Nothing is worse than running out of O2 in the middle of an attack at 3:00 a.m.

Learn more about using O2 for cluster headaches

Oxygen safetyCH Sufferers Guide to O2
High-flow oxygen for cluster headaches
JAMA Study – High-flow oxygen for treatment of cluster headache
Major Study Confirms Efficacy of Oxygen Therapy for Many Cluster Headaches

Suicide Headaches

Most of my posts talk about the impact of Chronic Migraines. But the headache disorder that finally did me in 14 years ago was Cluster Headaches. They are described as “the most painful headache, worse than unmedicated childbirth or severe burns”. That’s very true. The only mercy is that they don’t last as long. Typically a Cluster Headache will last from 30 minutes to 3 hours. That excruciating pain can be followed by hours, even days of dull, aching pain left over from the attack. Unlike migraines, movement makes it more tolerable. Patients can often be observed rocking, pacing, screaming, and cursing in the middle of an attack. Believe me, it actually helps. Normally quiet, compassionate, and soft-spoken — I turn into a raging monster in the throes of an attack. I once threw an empty oxygen tank across the room and ripped a non-rebreather mask to shreds because I ran out of oxygen before the attack could be stopped.

Like migraines, they can be either episodic or chronic. But the criteria is a little different. Episodic “clusterheads” (as we like to call ourselves) will typically have a 6-8 weeks of attacks occurring at the same time throughout the day. This is followed by at least 6 months free from attacks. It is very common to wake up with an attack in the early morning. Mine usually wake me up around 3:00 a.m. Chronic patients are those who never get a break. I got my first Cluster Headache in October 1999. They have been “chronic” ever since.

On a “cluster day” I will experience constant “shadows” for 12-24 hours at a pain level of 4 or 5 on a 10 point scale that sits in my right eye, making it itch, burn, tear up, feel hot the touch, with a visibly drooping eyelid and a runny nose only on the right side. These are accompanied by pain spikes that feel like someone is stabbing me in the eye with a hot poker. Spikes occur at least once and as often as 6 times a day lasting 1-3 hours. Twice a year I am so debilitated that I am often unable to work or do household chores for 2-4 weeks. With preventive medication, I typically get 3-4 days of attacks in a row, every other week. The longest I have ever gone without one is 2 weeks.

Most days I can abort the attack in its early phases before the pain gets too severe. Unlike migraines, these attacks require multiple uses of abortive treatments several times a day. While some triptans will abort a Cluster Attack (Imitrex injections are the most effective), they are not ideal for use more than once a day for a maximum of 2-3 times a week to avoid Medication Overuse Headaches. You can see how using Imitrex alone as an abortive isn’t the best option. Fortunately, there is a safe, inexpensive, and very effective abortive. It’s oxygen, but not just any oxygen. It must be 100% pure oxygen delivered at a high flow rate (10-15 lpm) for 15-20 minutes through a non-rebreather mask. Many patients are given cheap masks that do not form a good seal over the nose and mouth because insurance won’t pay for a good quality mask. The best mask I have found is the O2ptimask. (There is a link in the resource list below for a good price on one if you need it). It has made a tremendous difference in the effectiveness of this abortive for me.

Like migraines, there are preventive medications that can help stop an episodic cycle or reduce the frequency and severity of chronic attacks. You may recognize them, because they are also used to treat migraines. The most common are Topamax, Verapamil, Baclofen, Elavil, and Melatonin. Since I have both Chronic Migraines and Chronic Cluster Headaches, my neurologist and I have chosen “double-duty” medications to treat both conditions. You can see which ones are working best for me by checking out Tammy’s Treatment Regimen.

Additionally, like migraines, patients can lose hope, become depressed, and even think about suicide. Those without effective treatment frequently succeed in killing themselves. That is why this headache disorder is nicknamed “Suicide Headaches”. If it weren’t for Oxygen, I would have killed myself years ago. The compassion of my doctors and the sweet promise of relief when I hear that oxygen flow makes all the difference. However, this does not mean I can live a “normal life”. I must take an oxygen tank with me every time I leave the house. This results in some strange looks and comments. People assume that if you need oxygen, you must be dying of lung cancer or have severe COPD. I am not dying, nor have I ever smoked in my life. I don’t need oxygen to breathe, but I do need it to live.

This is the face of cluster headaches

This is the face of cluster headaches

You don’t have to suffer alone. There is hope.
If you or a loved one is thinking of hurting yourself, please tell someone. Visit the National Suicide Prevention Lifeline, call 1-800-273-TALK, call 911, or go to your nearest Emergency Room.
Your life is too precious to lose.

Resources:
Major Study Confirms Efficacy of Oxygen Therapy for Many Cluster Headaches
O2ptimask
Cluster Headache Info Support Group
OUCH UK – For UK Clusterheads

Please share this with others so they will know. Cluster Headaches rob the lives otherwise healthy, happy, intelligent, productive people and place a tremendous financial burden on individuals, families, and society.

Always be prepared!

We’re a Boy Scout family. So we’re prepared for nearly any situation. We have enough equipment to camp in any season, from sub-zero in the snow to 100+ degrees in the shade, high winds or blowing rain. We have multiple tents, sleeping pads, sleeping bags, boots, socks, long underwear for each of us to accommodate different temperatures and changing weather patterns. Preparing for a camp out may require a truckload or just a backpack, depending on the circumstances. We think about things like hydration requirements, sun safety, and conservation. Early on our children learned how to address a wide variety of injuries and illnesses using first aid and natural remedies. In addition to basic first aid, we can splint a leg, apply a compress, even create a makeshift stretcher to carry you off the side of a mountain. Even bee stings, poison ivy, and snake bites don’t scare us.

So why in the world did it take me so long to create and use a Migraine Toolkit?

It’s easy. D-E-N-I-A-L.

I didn’t want to admit that a migraine could (and probably would) strike anytime, anywhere. I would wake up feeling good and just take off. It felt so good to be “normal” that I really believed I was. Then a migraine would strike and I would be surprised and caught unprepared. I should have known better.

Then I began thinking…

If I had diabetes, I would never leave home without insulin, medications, and glucose tabs. I would check my blood glucose often and manage my diet.

If I had heart disease, I would take my meds, watch my diet, exercise (within limits), watch my blood pressure and cholesterol. I wouldn’t leave home without aspirin!

If I was blind, I would never leave home without my service dog.

If I had bad hearing, I would not leave my hearing aide behind for a day trip.

So what made me think I could leave home without medicine and supportive therapies to treat migraines, cluster headaches, back pain, and sleep apnea?

One word. D-E-N-I-A-L.

I have several serious medical conditions that will require careful monitoring and management for the rest of my life. Some days will be good, but others will not. Symptoms will come and go, but never completely disappear. I know know what I need with me all the time, no exceptions.

  • At least 2 doses of Naratriptan
  • A full oxygen tank with non-rebreather O2ptimask
  • At least 1 dose of IM Toradol
  • At least 1 dose of Phenergan
  • At least 1 “convenience bag” (for vomiting)
  • Tiger Balm
  • An empty ice bag with dish towel & scrunchie
  • An instant cold pack
  • A microwaveable neck wrap
  • MigraStick (peppermint & lavender)
  • Hand-held, battery-operated massager
  • Water bottle
  • Dark sunglasses
  • Lumbar wrap
  • Elbow brace
  • Wrist brace
  • ThermaCare heat pad (shoulder and back)

If I will be away from home overnight, I also include:

  • CPAP
  • Distilled water
  • Heating pad
  • Eye mask
  • Pillow
  • Afghan

Having these items in a single bag that I can grab anytime has made my life so much easier. I am prepared. I know what to do. Migraines may come and go anytime. But now I can begin to leave the house with confidence knowing that I will have access to the items I need wherever I am. I still fight the urge to apologize for all my “equipment”, especially when it turns out I don’t need it. However, my stress is greatly reduced just knowing that I will always have what I need should a migraine or cluster headache attack me by surprise.