What do we pay doctors to do?

Use medical instruments to collect data? Record that data in our charts? Perform procedures? Prescribe medications? Give referrals to other medical specialists? Recommend home care remedies and strategies?

Have I forgotten anything?

The author of a new memoir would say YES!

Kurt Eichenwald has written an astounding memoir, published last year, about his lifelong struggles with epilepsy . . . and people. He tells a story that made me cringe and kept me riveted. I was especially intrigued because his story has so many similarities to my own.

I do not suffer from epilepsy. I have not suffered from drug side effects to the extent that Eichenwald has. But I have suffered from debilitating medical issues. I have also suffered from drug side effects. And I have suffered, like Eichenwald, from the missteps, overconfidence, and occasional outright hostility of other people, while I was trying to attain the medical care I needed.

Perhaps one day I will write my story. But I’m not sure I have much to express that Eichenwald hasn’t already brilliantly covered in A Mind Unraveled.

Experiencing a health problem is scary. Full of fears and anxieties, we turn to doctors for their expertise; and we believe what they tell us. We want to believe; we feel that we have no choice but to believe. But Eichenwald tells a horrific story of doctor after doctor failing him. He was misdiagnosed, multiple times. He was treated with condescension and disrespect, multiple times. He was prescribed medications that almost killed him, multiple times. He was wrongly informed that his seizures were not epilepsy, but a psychological disorder, multiple times.

Finally, after years of worsening epileptic seizures, and years of taking seriously high doses of medication without proper physician monitoring; after years of not knowing where he would wake up next, or with what debilitating injuries; after years of enduring discrimination for having a disability, and personal trauma and that almost resulted in him giving up on life entirely—he finally stumbled upon a doctor who was willing and able to help him. Here’s what happened during Eichenwald’s first consultation with Dr. Naarden:

“After twenty minutes, Naarden had already spent more time speaking with me than any other neurologist ever had.”

What?! No other neurologist had spent more than a total of twenty minutes talking with their patient about a serious, debilitating medical problem?

During that first visit, Dr. Naarden went on to speak with Eichenwald for much longer than twenty minutes. And he continued talking with his patient. He talked with him not just during the initial consultation, but during future visits. And this communication went both ways. The doctor listened very carefully to Eichenwald’s story and asked follow-up questions. He also told Eichenwald, in detail, what he knew about Eichenwald’s current medical situation, what he didn’t know about it, and what he would like to do in an attempt to learn more.

This communication was essential to a correct diagnosis of Eichenwald’s disorder. It was also essential to the series of careful, logical steps the doctor had to take to get Eichenwald’s epilepsy under better control, as well as to prevent high levels of drugs from further damaging the patient’s health. Finally, it was essential in instilling a sense of trust in Eichenwald, who by then had understandably given up on trusting any doctor, and was hesitant to do anything one advised him to do.

When a doctor talks with a patient about a medical issue, this is not wasted time. This is an integral part of the data-gathering process. Anecdotal information from the patient is equally as valuable as measurements obtained from diagnostic tests. When a doctor does not gather information from a patient, key pieces of the puzzle go missing. The doctor is then forced to jump to conclusions.

I was shocked that no other doctor had spent time talking with Eichenwald . . . but I was not surprised. The same thing happened to me. After encountering a series of doctors who misdiagnosed me and gave me wrong treatments and advice, which significantly worsened my problems, I finally stumbled upon one who was willing and able to help me.

How long had each of the unsuccessful doctors spent speaking with me about my health issues, total?

Yep, less than twenty minutes.

How long did the successful doctor spend speaking with me—during my initial consultation alone!—about my health issues?

Yep, more than twenty minutes.

So, what do we pay doctors to do?

One of the great things about the book The Body Keeps the Score, by Bessel van der Kolk, M.D., is that it is written for laypeople and practitioners alike. No matter whether you’re the one lying on the couch, so to speak, or the one with the credentials, the book contains massive amounts of research-based insights.

One point that Dr. van der Kolk makes over and over is that not every strategy works for every patient. The key, whether you are the person in search of healing or the therapist, is to find the strategies that work, and move forward with those. That sounds like wisdom to me! That being said, the doctor explains that an overriding principle applies when people seek to recover from trauma:

“Trauma robs you of the feeling that you are in charge of yourself, of what I will call self-leadership in the chapters to come. The challenge of recovery is to reestablish ownership of your body and your mind—of your self.”

This passage occurs on the first page of the last section of the book, “Paths to Recovery,” which takes up nearly half its pages. In this section, Dr. van der Kolk offers information on a variety of ways that people can move toward self-leadership. These strategies are as diverse as the people they help. Some require a group of people, some require one-on-one sessions, and some require the seeker of relief to be alone. Some require help from a trained professional (in psychology, yoga, theater, choir, or another area), and some require merely a willingness on the part of the seeker of relief to try something new.

Dr. van der Kolk further refines what it means to develop self-leadership. Here is his explanation of what self-leadership entails, no matter which strategies one uses:

“For most people this involves (1) finding a way to become calm and focused, (2) learning to maintain that calm in response to images, thoughts, sounds, or physical sensations that remind you of the past, (3) finding a way to be fully alive in the present and engaged with the people around you, (4) not having to keep secrets from yourself, including secrets about the ways that you have managed to survive.”

All four of these involve taking control over one’s life. Learning to be and remain calm is the same thing as learning to control one’s response to emotions. Learning to stay in the present (and not the past) is the same thing as learning to control one’s experiences. Engaging with other people is the same thing as taking control over one’s ability to receive something essential to all people: human companionship and love. And being honest with oneself is an essential first step in taking control over one’s life—as opposed to letting one’s fears control it.

In writing this post, I suddenly remembered a short story I read in college, “The Yellow Wallpaper” by Charlotte Perkins Gilman. At the time, I did not understand why my professor thought the story was so great. I reread it just now, and wow—do I understand now. (Oh, the things I wish I had picked up on at a younger age!)

“The Yellow Wallpaper” is about a woman experiencing “nervous depression.” Her husband and her brother, both physicians, insist that the cure is for her to do as little as possible. She must not do anything she loves, such as writing or visiting with loved ones! No, she must stay isolated at home, mainly in bed, until she recovers. The poor narrator trusts these authoritative men more than she trusts her own intuition. Things do not, needless to say, end well.

If you are hoping to recover from trauma, the last thing you need is for someone to further restrict your agency. And note that Dr. van der Kolk mentions both writing and loving human contact as strategies for developing self-leadership. But also note: the answer is not to stop listening to the advice of loved ones and professionals. Rather, it is to listen to them with a grain of salt. If your gut tells you a recommendation is a bad idea . . . it probably is. Even if the person giving you the recommendation is a doctor, your husband, or both.

Who’s in charge of your life?

I was stumped by yet another medical mystery.

A prescription drug that helps me immensely also makes me tired. I have trouble waking up. I feel fairly alert in the morning, but I ache to nap all afternoon. And forget the evening—I’m ready for bed immediately after dinner.

My doctor has been helping me experiment with different remedies for this problem. Now, granted, I can still function. The problem isn’t severe. In the past, I have been on medications that made me significantly groggier. Still, if I can maneuver myself into a life situation in which I feel more alert more often, I will happily take it.

The trouble, however, is that doctors and scientists, even in this advanced age of medicine and technology, don’t really know how the brain works. And they don’t really know what happens when different chemicals are introduced to it. We know a whole heck of a lot! Sadly, though, that whole heck of a lot amounts to a patchy understanding of what’s going on up there. The brain is just too complex and intricate and multivariate and changeful.

As Gary Greenberg writes in his article “Psychiatry’s Incurable Hubris,” in the most recent issue of the Atlantic, “Psychiatrists . . . cannot precisely predict for whom and under what conditions their treatments will work.”

Sigh. That explains why my doctor is forced to help me experiment. Since different people react differently to any given drug, it’s not possible to know beforehand what will work for each patient.

Thus my doctor, thinking we might make a change and see how I felt, prescribed me a new medication.

I felt different right away. Within a few hours, I felt like I was floating on a cloud. A very nice cloud. The niceness of the cloud intensified over the next few days. It became softer and fluffier and cozier . . . and I felt like sleeping. All day long. Zzzz. . . .

In the meantime, I made a profound discovery about this medication. Listen up, literary friends, because this is crucial! This is key! This is vital! My new medication . . . gave me writer’s block!!!!

I could no longer write blog posts! With sufficient amounts of caffeine and junk food, I was able to edit and proofread, but write a paragraph? Nope! (Needless to say, since you are reading this post, I went off that drug pronto.)

Why is this significant? Well, listen to this fine theory of mine. If this drug energizes some people—not me, obviously!—then might it not also cure any writer’s block those people might be experiencing?*

I humbly invite the reps of said drug company to call me ASAP, so we can discuss my payment for this lucrative marketing idea.

*In case it isn't sufficiently clear, this is a joke. Do not try this at home, or at work, or on a sailboat, or at an amusement park, or in an airplane, or anyplace else you might find yourself. Please also refer to the footnote in my original Medical Mysteries post.

Sleep. That place to which we all disappear for hours at a time. Drifting off. The mysterious and intangible loss of consciousness. The strangeness of dreams. Waking refreshed . . . or not so much.

As a kid, I was scared of the loss of consciousness that is implicit and inevitable in falling sleep. As an adult, I have, at times, felt even more afraid of the continuity of consciousness that is implicit and inevitable in being awake.

The protagonist of the novel My Year of Rest and Relaxation, by Ottessa Moshfegh, falls into the latter camp. She does not want to experience life. She wants to fade away, to live in the darkest shadows, where she cannot be found—not by anyone, and especially not by herself:

“And that was exactly what I wanted—my emotions passing like headlights that shine softly through a window, sweep past me, illuminate something vaguely familiar, then fade and leave me in the dark again.”

The protagonist adores sleep like nothing else in life. That is a very oxymoronic stance to take. Sleeping, she does not exist. Waking, she fetishizes sleep:

“The bed was a king, low to the ground, and whenever I slept in it, I felt very far away from the world, like I was in a spaceship or on the moon. I missed that bed. The stiff blankness of my mother’s eggshell sheets.”

I am currently coming out of a period of “rest and relaxation” myself. Over the past few years, I have experienced a variety of physical and mental health issues that I am treating with wellness activities . . . and prescription drugs. My doctor recently changed the dosages when I explained that I was sleeping too much at night, sleepy throughout the day, and struggling to get things done. The past couple weeks have been a wonderful period of awakening. And yet, I remember the great relief I felt upon descending, initially, into the sleepiness that would rescue me from my ailments.

One could, I suppose, judge those who use drugs that cause them to descend into sleep as somehow lacking in the vitals of life. Perhaps I and Moshfegh’s protagonist—and I may as well add Juliet and Romeo—are poor, broken, creatures who cannot sustain the light of consciousness as naturally given to us. Or perhaps, as in the case of Rip Van Winkle, intoxicating ourselves to sleep is something that just happens to some of us, beyond our control and comprehension.

Are you feeling sleepy?

I was stumped by yet another medical mystery.

I have been plagued by migraine headaches for my whole life. My triggers include too much sunlight or sunlight from certain angles; overheating; too much alcohol; dehydration; not enough sleep; too much jostling while traveling by car, bus, train, plane, boat, roller coaster, horse and buggy, etc.; jostling from too much coughing; and vomiting for any reason. (Apologies if that was too graphic for you. . . . If it was, you may wish to stop reading.)

These migraines are no small deal. They leave me moaning in bed in severe pain. And they last ten days: exactly ten days, no matter what I do, diminishing in severity during that time. Luckily, I get them only a few times per year. Unluckily, they are debilitating, causing me to miss work, social engagements, and regular life activities; and they are extremely unpleasant.

(And people wonder why I don’t like to travel! Have you ever been stuck in a New York City hotel with a ten-day migraine?)

My usual medicine for migraines is ibuprofen. Lots of ibuprofen. 800 mg, 4 times a day, for 10 days. This allows me to return to work within a day or two, though at that point I still have frequent intervals during which I need to lie down.

Having heard about other medicines on the market, I asked my doctor about my options. Over a period of a year or two, she recommended a series of drugs, all in the triptan family: rizatriptan, sumatriptan, etc. I must have tried them all. But I could not keep a single one of them down. Within half an hour to an hour of taking a pill, I would acquire a level 10—maximum strength!!—headache, vomit the pill up, and stagger off to bed for the next several days.

Finally, after completing the brutal rounds of the triptans, my doctor recommended magnesium supplements. In previous months, I had taken a daily magnesium pill, but it did not seem to have any effect. However, my doctor explained that magnesium is not always absorbed well by the body, and some supplement formulations work significantly better than others.

Upon hearing this, I scampered off to the Internet. There, I read that, indeed, some magnesium pills are nearly useless because the body does not absorb the mineral. Yikes! I decided to try, instead of a pill, a powder that I mix with water. The manufacturer claims that the magnesium in this powder is in an easily digestible form.

Well, and guess what? I have not suffered from a ten-day migraine attack—knock on wood!—since beginning this daily powder supplement regimen, which was many months ago. (When I feel a headache coming on, I still reach for my ibuprofen standby and pop those pills as soon as possible, along with half a slice of bread so they are absorbed. This has happened several times in the past few months, but none of these twinges have developed into a full-blown attack—knock on more wood!)

This solution may not work for everyone. Everybody’s body is different. But perhaps it will help someone out there; and so I share my story.*

But anyway, here’s the main medical mystery here: why on earth didn’t my doctor share the magnesium idea first, before hitting me up with the hard stuff?

(I have some guesses as to the answer, and none of them are pretty. Fortunately, though, you stopped reading back at the second paragraph, so you will not be filled with desperation at the suggestion of pharmaceutical companies’ mighty, and powerfully complex, hold over physicians (see, for example, this article about human tendencies toward reciprocal gift giving); or patients who insist on the hard stuff, and as much of it as possible, and are offended by attempts to seek more natural solutions. . . .)

*Please be so good as to refer to the footnote in my original Medical Mysteries post.