Sometimes, You’re the One
OR: The Story About How the Five Finger Approach Found a Problem That Had Never Been Described, and How it Changed Wendy’s Life
By David E McCarty, MD, FAASM (but you can call me Dave)
~ ~ ~ ~ ~
“To study the phenomena of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all.”
~~Dr. William Osler
“It is better to know some of the questions than all of the answers.”
~ ~ James Thurber
~ ~ ~ ~ ~
In a prior post, I told the story of how a young woman experienced what I would call supervised neglect for five years, within a medical system that should’ve known better, and how the embarrassing revelation of our collective mistake led me on an obsessive search for a way to prevent the same type of medical decision-making error from ever happening again.
This search compelled me to develop a decision-making tool that requires providers to begin with a patient-generated narrative, and challenges them to consider the possibility that the patient’s sleep-wake complaints could be coming from more than one source.
I finally published my tool—called THE FIVE-FINGER APPROACH—in 2010, and I’ve used it and taught it ever since. Back then, I jotted the paradigm onto a dry-erase board in the teaching room, in the way-back bowels of the LSU Shreveport Wednesday Sleep Clinic, for students, residents, and fellows to learn.
Flash-forward to 2022--I’m thrilled to report that The Five Finger Approach is still an official part of the curriculum at LSU Shreveport Fellowship in Sleep Medicine! They even moved that same dry-erase board, complete with my ancient hieroglyphs, over to the new clinic!
Huzzah! Huzzah! Huzzah!
The Mysterious Immortal Dry-Erase Board
The factually-original posting of the Five Finger Approach, as seen in October 2022, drawn by yours truly in 2010. Put the Windex away, please.
However.
That’s not what this story’s about.
If the above pre-amble was talking about WHY Sig. Ferrari designed a really RAD road-hugging sportscar…this story is about what it feels like to… drive it.
OK. Maybe not that cool. But: this story is about The Five Finger Approach in action. On an actual Road Test.
Cue cool theremin sounds as time travels backward…
The year was 2011.
One year previous, The Five Finger Approach got published for everybody to see, and, after that, I made it a point that all the students and residents rotating through our service knew how to use it.
I guess that’s why I mentioned that bit above, about the dry-erase board.
The point is: If you rotated through my service, you got to see it, and we sure as heck were gonna talk about it, at some point.
Under the beaming glow of that now-undying magnificent Dry-Erase Board, a fourth-year medical student named Colin dropped a four-volume paper chart onto the conference room table, and perched himself industriously in front of the computer as he tapped his way through the login windows and began his presentation to me.
Colin was still typing as he began to speak.
“Ms. Wendy is a 44-year-old woman with a history of bipolar disorder and obstructive sleep apnea…AHI is 26 per hour, desaturations into the 70’s…history of migraines…um…high blood pressure…”
Colin trailed off as he finally accessed our patient’s electronic chart on the computer. All encounters henceforth would be found in there. Everything that came before…that’s in the paper mess I was busily looking through, flipping through fading handwritten notes and typed reports, stepping into the past over pages increasingly more dog-eared, fragile, vulnerable.
“She’s supposed to be on CPAP 8 cm H2O, but she’s not really using it at all,” Colin said. “Says she’s having terrible nightmares.”
At that point, one of our two Sleep Medicine fellows piped up: “Nightmares? There’s some good data for prazosin in treating nightmares in PTSD. There’s some older data for trazadone and nefazadone, they think because of post-synaptic serotonin antagonism, but since she’s a psych patient, I wouldn’t mess around with those unless you talk to her psychiatrist,”
All of these were solid points, and I was proud of my fellow for paying attention, for having read the textbook, and for having a sense of needing to coordinate care with other providers.
“Prazosin?” Colin asked, confused. “Isn’t that a…blood pressure medication?”
Indeed it is, my young friend.
Though the data at that point in time were still emerging, a lot of signal pointed to dysregulation of the fight or flight nervous system as being central to the pathophysiology of the whole mess we call “PTSD.”
In 2007, a blood pressure drug called prazosin, which blocks specific adrenaline receptors in the brain—called “alpha adrenergic” receptors—was found to significantly reduce the burden of suffering specifically caused by nightmares in combat vets with PTSD.
The reason it’s a solid point—nightmares are notoriously hard to deal with. Historically, no meds really seem to reliably help.
On top of this, our patients were typically poor, and often had no health insurance. A flippant recommendation to see a therapist would likely be met with indifference. Or a scoff.
So: it was nice to know that there was some good science behind a non-addictive, inexpensive pharmacologic treatment strategy, at least for certain types of nightmares.
That type of knowledge felt like valuable power.
In the conference room, we talked a little bit about the data supporting the use of prazosin, about the possible things that could go wrong with this drug (it IS a blood pressure medication, after all, not a vitamin!), and about how we might follow it up, if we decided to go that route.
It was a nice little thought experiment, and I think everybody learned a little bit. We concluded the little teaching session, and my fellow went into another room.
The time had come for me and Colin to go see our patient.
As we prepped to go in the room, we looked at the dry erase board.
“Let’s go teach the patient about the Five Finger Approach,” I said.
…
I double knocked on the door, like you do, and opened it. Seated in the chair was an amorphous mess of a human being. She looked like an unmade bed.
Her blonde hair was dirty, hanging in irregular strings, partially covering her eyes. Her Bugs Bunny T-shirt was stained. Her left shoe was coming apart.
I sat down, and made myself comfortable. Colin took his place at the computer terminal in the room.
“Hi,” I said, putting out my hand. “I’m Dave McCarty. I’m one of the attending doctors at the Sleep Clinic. Colin tells me you’ve been having some problems using your machine, because of bad dreams…”
She shook my hand with a feeble grip. “Yeah, they’re pretty bad,” she croaked.
“You want to tell me about them?”
Wendy looked up with a birdlike jerk, and one of her hands went to her mouth, like a reflex.
“Oh, Doc…” she started, and then she couldn’t finish. Her face flushed scarlet, and silent chugging hiccupping sobs briefly preceded an equally brief yet startlingly copious eruption of tears, followed by a hasty retreat into a handkerchief and a honking nose blow.
After a few seconds, she stowed her hanky into her handbag and looked at me again with fresh interest.
Her eyes, though ringed in red, shone with intensity.
“Oh, Doc, they’re bad. They’re as bad as bad can get. My children…hacked…into pieces…I’m literally soaked in their blood…it’s every night…every night…I wake up at 2, and I’m just screaming. The sheets are soaked in sweat. It’s hell. It’s hell. I usually can’t get back to sleep after that.”
“What do you do then, after you wake up?”
“I usually get up and smoke a cigarette,” she laughed, the laughing turning into a rumbling cough deep in her chest. The smell of stale cigarette smoke was acid in the air.
I waited and didn’t say anything.
“No way in hell I’m gonna put that damn mask on. No way in hell.”
“I totally get it. Let’s talk about these nightmares. When did they start?”
“Oh, I remember exactly. They started 8 months ago, when I had my breakdown.”
I looked at her quizzically, then looked at Colin, who was tapping his way through her chart on the computer.
“She was admitted to the psych ward last January…diagnoses were bipolar disorder with suicidal ideation, discharge note says she’d improved and was to follow up with psychiatry…the Sleep team haven’t seen her since then…”
Interesting. The patient knew exactly when this started. That’s very interesting, indeed.
I turned back to Wendy.
“Wendy, for any complaint about your sleep experience, we have a method that we use to try to sort out what’s what. It’s because there are lots of different things that can contribute to a person’s individual experience. Our role is not just to manage your diagnosis of Sleep Apnea, our role is to help you solve your sleep-wake complaints.”
“Sounds like a smart way to do it,” Wendy said. She continued to look right at me. She was paying attention.
“I like to break it down to exploring five different areas, and I like to teach you what I’m doing, so you can help me. Often, we can find things we can improve on, as a whole, when we break it down like that.”
At that point, I drew a crude cartoon of an outstretched palm-up left hand onto the paper that was spooled onto the examination table.
Wendy pulled her chair over to the table, so she could see. I hunched over the drawing and wrote as I talked.
“We use a memory tool called the Five Finger Approach,” I said. “The thumb is for Circadian Misalignment…this is where we think about where you are in your whole 24-hour cycle, and whether you might be battling with a sort of jet lag, and we ask whether this might contribute to what’s bothering you. The index finger reminds us to think about pharmacology…you know…the medications and other substances you might be taking or using…. The middle finger is for medical problems, and whether these might be contributing to your complaints. The ring finger examines psychosocial and psychiatric forces that might be contributing. And, finally, the pinky is where we think about “the usual” sleep diagnoses, like Sleep Apnea. I’m going to ask you some questions about each of these areas, and we’ll see if we can find anything to work on. Get it?”
“Yeah, I get the idea that there are different things to think about…”
She didn’t look up. She wasn’t ready for any new information. Yet.
For several seconds, she studied my cartoon drawing of the hand, with the labels I’d added as I’d talked.
“This all makes sense to me,” she said pointing to the fingers on the cartoon hand, “but this,” pointing at the thumb, “I’m not sure what you mean by…Circadian Misalignment…”
By that point, Colin had switched gears. He’d heard this song before, so he’d gotten started typing his note into the electronic health record. I’d guess he was clocking in at about 70-80 words per minute.
He was really blazing.
I let him type. It wouldn’t take too long to explain the Two-Process Model, and go over the part about how the Forbidden Zone can prevent you from falling asleep at your bedtime, if your circadian sleep phase got delayed.
We talked about all of this for about five minutes. The patient listened intently, nodding, asking a couple of questions.
After a brief discussion of her usual schedule, she and I were both pretty convinced that circadian misalignment wasn’t really a problem for her. I spray-painted a big red “X” on the mental checkbox for THE THUMB.
On the exam table, though, I just crossed it out with my pen.
(Public service announcement: If any of this sounds mysterious to you, well, dear readers, consider it an invitation to listen to Episode 5 of our Empowered Sleep Apnea: THE PODCAST. All will be revealed! Yay, Adventure!)
Any-who…
Circadian misalignment is not the important part of this story, anyway.
The important part of this story is what happened next.
“The INDEX FINGER is about pharmacology. This is where we have to review everything you take, whether it’s prescription or over-the-counter, legal or recreational. I’m not gonna judge anything, I just want to see if there’s any chance something you’re taking might be contributing.”
[Quick aside: At this point, I was specifically thinking about illicit drug abuse, alcohol abuse, and beta blockers.]
The first two may be self-evident, so I won’t get into it. Beta blockers? That’s something different.
It turns out, catastrophic nightmares can occasionally be precipitated by beta blockers. I’d read about this phenomena, though, at that point, I hadn’t personally seen a case yet. I was suddenly feeling quite curious to see if perhaps she’d been started on a beta blocker during her stay on the psych ward. Sometimes, see, beta blockers are used to treat anxiety. Sometimes, they’re used to manage the side effects of anti-psychotic medications.
She also carried a diagnosis of hypertension, and, after all, beta blockers are antihypertensives…
It was a distinct possibility.
If beta blockers were the explanation, this could potentially be a really good teaching point, for the student!
Perhaps we could even do a grand rounds, to discuss the pathophysiology of beta-blocker associated nightmares? This could be very cool, indeed!
“Colin, go ahead and pull up her med list and let’s go through it.”
Wendy spoke up: “Well, I’ve got good news for you, Doc. I quit drinking five years ago, and I don’t smoke weed or do any other sorta drugs. This here’s my only vice,” she laughed, holding up her pack of Newports.
I smiled warmly. Good news about the alcohol and the drugs. Check, check. We’d have time to talk about the smoking on another day. That probably wasn’t the explanation for the nightmares, anyway.
A battle for a different day.
“Good deal,” I said.
Colin sighed, and I looked over at the computer screen.
Wendy’s medication list was four pages long. According to our computer system, there were 34 active medications on her list.
I looked over at Wendy.
“Hey, Wendy, put your detective hat on, and come over here,” I said. “We need to figure out if any of these medications began at around the same time as your nightmares.”
Wendy was all in. She dragged her chair over to the computer terminal, and the three of us huddled at the screen together, like kids watching Saturday morning cartoons in 1972.
We started at the top of that medication list, and we went through it, one by one.
“I’m not taking that. “
“That? I never took that! It was too expensive.”
“I stopped that one after a week. It made me sick.”
“Yeah, I’m taking that one, but only once in awhile, and they started that only a couple of weeks ago.”
One by one, we went down the list, Colin dutifully updating the electronic record with sputtering explosions of typing. No beta blockers on the list, though. Not a one.
What’s that? Oh, that’s a bowel prep. I never filled that, because they canceled my ‘scope.
Yeah, that’s my inhaler. I use it only sometimes.
On, and on.
Each drug we examined was either no longer being taken, or it didn’t make sense timing-wise, with the precise onset of her symptoms, which all began when she was hospitalized.
She was very clear on that point.
It all started on the psych ward.
I was preparing to move on to explore THE MIDDLE FINGER, when we arrived at the last medication on her list, an antiviral drug called valacyclovir.
“You still taking this one?” I asked.
“Yep. Still taking that. And…actually…THAT drug?…that one they actually started when I was hospitalized. You know. In the psycho-ward?”
She laughed. She wasn’t happy. She was embarrassed.
My heart broke.
But: interesting.
“How come they started that for you?” I asked.
“Oh, I had a big flare of cold sores. I was so stressed out. They said it would keep the cold sores down.”
“Have you had any flareups since?”
“No, it was really just that one time. They told me to keep on taking it, so it wouldn’t come back.”
“I see.”
I’d been aware that valacyclovir could have strange effects on cognition. I’d heard about reports of ICU-psychosis, and delirium caused by valacyclovir in hospitalized geriatric patients. A case report had recently been published about valacyclovir causing a case of manic psychosis in a patient who previously had no psych history.
Why not nightmares?
A brief lit search revealed Valacyclovir hadn’t been described to cause nightmares. Still hasn’t, to this day. At least, not in PubMed.
In other words, back in 2011, if the valacyclovir was the causal agent, Wendy’s case would’ve been the first to ever have been described.
A new disease. Iatrogenic Nightmares due to Treatment with Valacyclovir. I could see the case report title in my mind’s eye. Damn! We might even get a publication out of this.
I turned back to Wendy.
“Wendy, how would you feel about stopping the Valtrex?”
“Fine.” Without hesitation. None.
“Valacyclovir has never been described to cause this type of a thing, but I think that it’s possible it could be contributing.
“Fine.” Again. No hesitation.
We finished our conversation with a brief exploration of the remaining three fingers on our cartoon hand. We spent some time on the ring finger: psychosocial and psychiatric forces.
Besides the terrible time sleeping, and the psychological suffering accompanying the traumatic dreams and the sleep deprivation, her mental health journey was actually going relatively well. She continued to practice sobriety, was employed, and was not having trouble at work.
She was steering clear of self-destructive thoughts, was keeping up with her bills, was following up regularlry with her psychiatrist. She was happy with her mental health medications. All in all, it didn’t appear that her psych meds required adjustment.
When we discussed the pinky, I knew that—untreated—the nonspecific physiologic stress of Sleep Apnea could be a provocative factor in dysphoric dream content, so I encouraged her to restart her CPAP, if she could.
We parted ways, and, at the time, I wondered whether I’d ever see her again. LSU was, at its heart, a charity hospital, at least that’s how it began, and back in 2011, Wendy, like many of our patients, had no insurance.
Stability, however reassuring, was an illusion, and all of us knew it.
We made a plan for two-week follow up, and I wished her the best.
When she didn’t show for her appointment, my heart sank.
In our business, no-shows are either very good or very bad. You never know if they bailed because they felt great, or if they bailed because they fell off the world into oblivion.
I had to know. I called that last number we had on file.
Disconnected.
That, it seems, is the end of that, I thought.
And then…I went on with my life. Colin rotated off-service, and I gradually forgot all about Ms. Wendy and her nightmares.
Until.
She came back.
She finally did come back. Two months later.
And when I walked into the room, I had to look again at the chart in the door. I thought I’d made a mistake.
Sitting before me was a woman, transformed. Her hair was combed and pulled back into a neat ponytail. Her clothes were clean and pressed. Her eyes sparkled with energy. Her face was consumed by a heartwarming grin.
And this: She was wearing makeup.
As I entered the room, Wendy rose from her chair and walked toward me, with her arms opened wide.
“Doc, I’ve been waiting to give you this hug for two months. You saved my life. Stopping that drug saved my life. I haven’t had a single nightmare since we stopped that drug. Not one.”
She pressed a Hallmark card into my hands. Snoopy and Woodstock were celebrating together. On the inside, it said: “I’m just thankful for YOU.”
She went on to tell me that she was successfully using her CPAP machine, sleeping well, and feeling great. Her life…had truly…turned completely around.
I was exhilarated, thrilled. I was also pissed off that Colin wasn’t there, to see what had happened. I wanted him to see where all of his hard detective work had gotten us. I thought about him, dutifully typing away, as we waded through the med list. I wanted him to know.
…
So it goes. Another moment of wisdom lost, in the chattering blizzard of snapshots that defines one’s education.
…
As for me, as good as it felt to receive such gratitude, and to know she had improved, I still had a favor to ask. It was an ugly favor, too, and I was pretty sure I knew the answer. I put my Snoopy card into my white coat pocket and sat down.
“Wendy, I’d really like to write your case up, as a case report. I feel like other people should know that this happened to you, so that if it’s happening to them, they can learn.”
“Go for it,” she laughed, “I don’t mind being part of medical history!”
“Well, here’s the thing…to get this published, I have to prove that valacyclovir was the CAUSE of your nightmares…and in order to definitively prove causality, we have to demonstrate that the nightmares went away when you stopped the valacyclovir…”
“…yeah, we did that, alright!...” she quipped, beaming.
“…and then we have to demonstrate that the nightmares come back when you’re re-challenged with the drug.”
Wendy stopped smiling.
“You mean, you want me to start that shit up again?” she managed. Still not smiling. Her eyes were suddenly two sizes bigger.
Then she spoke again.
And what she said next contained several words which I will not repeat here, though all of it was delivered in a very measured and reasonable-sounding speaking voice.
I’ll leave it at this, dear readers: she enthusiastically declined.
Medical history be damned. She was happy just to feel better.
…
Parting thoughts: A diagnosis-based problem-solving strategy focuses on the evidence, and what has been proven.
That’s all well and good.
A diagnosis-based system focuses on labels, and whether a patient fits into a diagnostic category neatly enough to justify a specific treatment.
Also: well and good.
I will add this though: it only remains all well and good as long as we don’t lose track of the patient’s narrative, as long as we realize that there is a DECISION MADE between the narrative experienced by the patient, and the implementation of a treatment strategy.
That decision is called DIAGNOSIS.
And, for disorders that are a challenge to treat, it’s all too easy to jump straight to a diagnosis that has a proven treatment. Like prazosin has some data for treating nightmares in combat vets with PTSD.
Assumptions, man!
It would have been so very easy to place Wendy into the silo for people with PTSD. She had trauma, yes indeed! She’d had loads of social trauma in her past!
Here’s another mental explosion: Could it be that a past label of being a “psych patient” puts one’s providers at risk for taking a mental nap, instead of problem-solving one’s story? Could it be that we’ve become so enamored with our own treatments, that we’ve forgotten the fundamental art of listening to our patients?
That can happen, you see, if one jumps to the DIAGNOSIS stage too quickly. If one jumps, without considering the FIVE FINGERS.
We can spot true patient-centered medicine by virtue of what it ultimately accomplishes. Pretty is as pretty does, as the saying goes.
With the FIVE FINGER APPROACH, Wendy got a little bit of teaching, she participated in some shared detective work, and she left our clinic with a simplified medication regimen.
All of which ended up magically resolving symptoms which had heretofore been destroying her life by keeping her emotionally traumatized, sleep-deprived and unable to tolerate her CPAP machine.
Here’s the real magic trick: the ultimate treatment plan we came up with was formulated to address a diagnosis that had not been previously identified.
I’ll say this differently, because (as usual) I’m trying to make a point: Using first-principles of a patient-centered method, Wendy and I were able to engineer our way out of uncharted terrain.
Because, here’s the teaching point, Life-Fans: There are a jillion ways to screw up your sleep. Most of them haven’t been thought up yet.
There will be more.
There are always more.
Medical history be damned.
Providers must strive to resolve individual suffering, even in an evolving, changing world.
Medical history be damned.
Not everything on your journey will be on someone else’s map.
Medical history be damned.
She was happy just to feel better.
All of this is to give a reason, dear readers, for why The Five Finger Approach is still my favorite Swiss-army knife, when it comes to solving problems of assigning blame for sleep-wake complaints.
It keeps all of us honest, and it enlists the patient as an active agent for the investigation.
Here’s the thing: if a sailor runs aground at sea, it serves her poorly to remind her that the offending archipelago ain’t on the map. The world’s a changing place, and maps can be outdated. To a sailor, it’s the conditions in the boat that matter most.
All of this serves to introduce a new cartoon…in which we find Claudio thrust into a little investigation of his own…prompting us to ask ourselves a serious question…
When it comes to our experience with sleep, whose opinion matters most? Whose experience matters most? Whose LIFE matters most?
As you pontificate on your response, grab an I.B.C. Root Beer, and pull up a chair...here’s a little something I’m calling: Sometimes, You’re the One.
Happy Friday, Life Fans!
