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.
What 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.
Yesterday afternoon I felt the familiar twinge above my right eye that warned a cluster attack was on its way. 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.
I grabbed my hand-held massager and some fresh batteries. The vibration will often stall an attack. I worked 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.
Realizing the attack wasn’t really over, I grabbed an energy drink, a large ice pack, and my massager. 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.
I 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.