Coping, Society

Migraine Stream of Consciousness

I’m writing this with a level 6 migraine. That’s the most painful a migraine has been for me in the last 11 months. Although I remember the years when the pain didn’t drop below a 7, regularly hit 8 and 9, and was sometimes so severe I tempted fate and rated the pain a 10, I don’t remember what the pain actually felt like. That’s one of the courtesies of the human body — an inability to remember severe pain. So when I rate my pain a 6, I know it hurts a lot, but also recognize that it can be, and has been, much worse.

In some ways, level 6 pain is more difficult for me to endure than higher pain levels because I’m still fully present. At level 7 and higher I dissociate; I stop being present with the pain. It’s like I leave my body and numb out for a while. I also become less coherent, sometimes even incoherent.

It’s strange to me to be writing a post when I’m at my current maximum pain level. I’m used to associating maximum pain with an inability to think. My thoughts aren’t entirely clear and I’ll likely find mistakes in this post when I read it when the migraine has let up. Still, the words make sense, the sentences are logical. I’m not writing “refrigerator” when I mean “shoe” and I can complete thoughts. That’s partially a function of reduced pain and part that this particular migraine isn’t causing too much cognitive impairment.

In fact, this is what I’d call a “pure pain” migraine. My other symptoms are minimal, but my head is screaming. That classic symptom of migraine pain being exacerbated by movement is also on display. Pain is bad and difficult to ignore, but pure pain migraines are much easier for me to put up with than the energy-depleting, mind-draining ones.

I’m not sure why I’m sharing a stream of consciousness about this migraine attack, other than it’s interesting to step back and examine the experience. I want to be aware of and remember it so I can go back to being grateful that level 4 is my typical max pain level.

I’m also feeling grateful for the efficacy of my current preventives. The migraine attacks are still daily, but a level 4 is nothing compared to even a 6 and is infinitely better than higher levels of pain. Someday, though, the preventives could stop working, a reality that’s never far from my mind. This migraine reminds me what my days could return to. I’m fearful and also furious.

Furious that migraine is highly stigmatized and research is massively underfunded, that every preventive medication was created for another illness and efficacy for migraine was an incidental discovery, that only one novel drug class (triptans) have ever been developed to treat migraine.  Worldwide, 18% of women and 6% of men have migraine; 36 million people in the US alone have migraine. The World Health Organization ranks migraine in the top 20 most disabling illnesses on the planet.

Where’s the effective treatment? Where’s the funding to train headache specialists? Where’s the research that will mean my 16-year-old niece isn’t debilitated by migraine 20 years from now? Who decided there’s no value in my quality of life?



Leaving One’s Body to Survive Severe Migraines

After two months of my pain topping out at 5 most days and 6 every once in a while, a level 7 migraine hit in the early hours of Monday morning. What surprised me most is that only two months had passed since I’d had that much pain — it felt much longer. In that time I tried to remember what level 7 and higher pain felt like and how I managed to survive it. Because, while 5 and 6 pain isn’t bad compared to what it could be, it is definitely uncomfortable. I couldn’t fathom how I handled worse pain. The difference, I realized Monday, is that when the pain is 7 or higher, I leave my body. I dissociate and a quiet stoicism sets in.

Over the years, many people have recommended that I “go into” or “stay with” the pain. That trying to escape the pain actually worsened the sensations that I felt. Only by being present with my pain, according to this philosophy, would it ever lessen. To them there was a direct correlation between one’s ability to be with pain and the amount of pain that one felt. That is, if you stay with the pain, the actual physical sensation will lessen. From my experience, being present with the pain in mindful meditation improve the ability to emotionally cope with the pain, but not the amount of physical pain itself.

Furthermore, the body can only handle so much. The sense of leaving one’s body while experiencing severe pain is a natural coping mechanism. This dissociation is the body’s way of preserving itself.

Take a look at the upper levels of the TIPNA comparative pain scale, which I’ve excerpted below. The emphasis is mine.

Level 6
Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.

Level 7
Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.

Level 8
Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.

Level 9
Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.

Level 10
Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

For more than a year my pain was rarely less than a 7 and hit 8 or 9 nearly every day (migraine isn’t mentioned in 9 on the scale, but these were 9s for sure). By this scale, I was basically in childbirth for more than a year. “Going into” pain that severe and frequent will certainly stop the pain — because it will result in suicide.

Dissociation (and its cousin distraction, with which it pairs well) are powerful tools for coping with migraine. Tools that others may believe we are weak or not trying hard enough when we use them. Even if the shame isn’t outright, so many migraineurs seem to internalize such messages and gnaw on them as guilt.

Forget the shame and guilt. Use every possible tool available to you to get through a migraine spell. Leaving your body for a while when you’re in massive pain isn’t harmful. Getting caught up in a book or movie isn’t going to make your migraines worse. Dissociation and distraction are lifesavers. Literally. Trust me on that one.


An Unusual Perspective, Courtesy of Chronic Migraine

I’m finally in migraine hangover after 24 hours of level 7 pain followed by 12 hours of level 6 pain. I was uncomfortable and eager for the migraine to end, but mostly I was astonished. Astonished that just a couple years ago, level 7 pain was often my low for weeks at a time. You read that right. For weeks at a time, the pain would not drop below a 7, 8 or 9 was the norm, 10 wasn’t uncommon.

Despite the severe pain of this migraine lasting far longer than it has in recent months, I’ve spent the last couple days in a curious sort of gratitude. I wanted to be somewhere other than my body, somewhere I couldn’t feel the pain. At the same time, I rejoiced that this is no longer the norm.

It is always difficult to answer when people I haven’t talked to in awhile ask how I feel. I am better for sure, but am far from well. With a constant headache and at least five days a week where the pain hits at least a level 6, I’m still on the “very sick” end on the continuum of people with migraine. And am thankful to have improved this much.

Coping, Treatment

Pain Scales: Quantifying the Subjective

Whenever a health care provider asks my pain level on a scale of 1-10, I start with a disclaimer. Pain levels are entirely subjective and it is nearly impossible to assign numbers to vague concepts that vary from one person to another. This comparative pain scale is one of the best I’ve found, but my level 3 is a 6 on this scale

Putting numbers into words makes an ill-defined, fuzzy scale into perspective. Detailing what the numbers mean to you may help you track your pain more consistently. Some people recommend sharing the detailed chart with your doctor. Not a bad idea, except few doctors have the time to sort through all that. And he or she can’t keep track of what your scale means compared to Jenny’s or Lucy’s or Dave’s. It may be too much information to expect them to digest.

Instead of trying to assign numbers, researchers usually use a simple scale of none, moderate and severe. I use a more detailed version with mild, mild-moderate, moderate, moderate-severe, and severe. I still refer to numbers sometime, but they are always within the context of this classification. For example, 6 is moderate, 7 is moderate-severe.

What’s your pain scale? How have you communicated it to your health care providers?