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.

2 Replies to “High-Flow Oxygen is Exhausting!”

  1. I broke down while reading the second paragraph. Being reminded of the pain I went through for decades was overwhelming. My Cluster headaches finally stopped completely in my mid to late forties.(I’m 55 now) Oxygen was my savior for a number of years too. I had to use the needle as well. When Imitrex first arrived on the market, it had to be injected. The process was tedious back then, but i managed. When pills were finally available, I was paying ten dollars each for them. I didn’t have health insurance at the time. I would have to choose which headaches did or didn’t get the pill. The only thing that stopped me from opening a vain during bad headaches was my little girl. I was a single parent and could leave her. Not like that.

    I wish you all the good feelings the world has to offer. Please know that these headaches can stop. This does not have to be your life forever.

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