Coping

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.

Patient Education, Resources, Treatment

Pain Scales

A 1-10 ranking is the best way to express the severity of the pain, but it’s so subjective that I frequently question my own ratings. Is an 8 this week the same as it was a year ago, or even a month ago? How can I rate a headache higher than 9? Can my pain really be a 10? Am I tempting fate by rating a migraine 10 — couldn’t the pain get worse than it is?

The American Chronic Pain Association and Health Organization for Pudendal Education both offer great pain scales. I particularly like the one from HOPE, so I’ve included it below.

Perhaps more important that using one of these pain scales is to create your own Everyone experiences pain from their own perspectives, so a scale can be highly subjective. Having your own scale helps identify the pain relative to recent months or years. It’s also helpful to share your own scale with your doctor, who may then better understand what you’re going through.

Interestingly, a doctor that I’m friends with told me that ER patients tend to rate their pain as a 3 or a 10. This may contribute to the skepticism headache sufferers encounter in the ER.

Comparative Pain Scale (from HOPE)

0: No pain. Feeling perfectly normal.

1: Very mild = Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

2: Uncomfortable = Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. (Note that people react differently to this self-test)

3: Tolerable = Very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot. The pain isn’t so strong that you can’t get used to it. Eventually, most of the time you don’t notice the pain. You’ve adapted to it.

4: Distressing = Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma like stubbing your toe real hard. So strong that you notice the pain all the time and can’t completely adapt. This level of pain can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails and squeezing really hard. Not how the simulated pain is initially piercing but becomes dull after that.

5: Very distressing = Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that your normal lifestyle is curtailed. Temporary personality disorders are frequent.

6: Intense = Strong, deep, piercing pain, so strong that 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. (The person who posted this scale on the forum said that her migraine diary indicates this as her average pain on most days. I reach this level almost every day, but usually rate it a 3 or 4.)

7: Very intense = Same as 6 except that the pain completely dominates your senses causing you to think unclearly about half the time. at this point you’re effectively disabled and frequently can’t live alone. Comparable to an average migraine headache.

8: Utterly horrible = Pain so intense that 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.

9: Excruciating unbearable = Pain so intense that you can’t 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. (It’s scary to think about, but this was me for at least a year before I got my stimulator. Thus I was willing to give up a lot of money and mobility for an unproven treatment.)

10: Unimaginable unspeakable = Pain so intense that 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 rather than the blood loss, have experienced level 10.