Ep. 78 | The Unbearable Itch

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A woman in her late 30s woke up inside of a dark room and immediately began thrashing wildly.

Her wrists were bound to the metal rails on either side of her bed, keeping her pinned down and unable to use her hands.

Her head hurt from the gauze bandages that were wrapped tightly around her skull and held in place by a foam helmet that she was forced to wear to sleep each night.

But as uncomfortable as that foam helmet was, the compression was the only thing keeping her endless torment at bay.

The woman had been in the psychiatric hospital for weeks.

As far as she could tell, this was her future.

Gritting her teeth through the constant agony in her head, As she lay helpless and strapped to a hospital bed, she could feel her sanity slipping away.

But when her misery became almost unbearable, she reminded herself that she had chosen this.

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Because no matter how brutal these nights and restraints might seem, it was the only way she could survive.

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From Balin Studios and Wondry, I'm Mr.

Balin, and this is Mr.

Balin's Medical Mysteries, where every week we will explore a new baffling mystery originating from the one place we all can't escape, our own bodies.

So if you like today's story, please take a screenshot of the Follow Button's desktop and then set that photo as its home screen so it thinks the computer is frozen and has to keep restarting it.

This episode is called The Unbearable Itch.

One morning in the late 1990s, 38-year-old Sandy McKinnon hurried around her small apartment in Boston, Massachusetts, getting ready for work.

She wiggled her feet into her shoes while buttoning her pants, then raced into the bathroom to do something with her hair.

She looked in the mirror and sighed.

Her bangs and shoulder-length hair were more tangled than she thought.

She'd just bought a satin pillowcase to try to keep her hair smooth while she slept, but apparently it was not working.

She got her brush out of the drawer and began to comb her hair.

And as she did this, she accidentally brushed against her scalp, and as she did, she winced.

A sharp burning pain spread over the right side of her head.

Confused, she parted her hair to get a good look at her scalp in the mirror, and she could see blisters right there on her head.

She lifted her bangs up, and she saw the blisters extended all the way across her forehead.

But as alarming as this was, Sandy thought she knew what these could be.

A few years ago, she'd had a case of shingles, which caused a painful rash of red blisters, and so she wondered if maybe her shingles infection had returned.

It's rare for someone as young as Sandy to get shingles, but her circumstances were special.

Sandy was coming out of a difficult few years.

Five years ago, ago, Sandy was a professional psychologist and the proud mother of two children.

But then a painful divorce set her on a path of self-destruction.

She started drinking, and then her new boyfriend got her into heroin because it helped her cope with the pain of her family splintering apart.

Eventually, because of the way Sandy was living her life, she completely lost visitation rights with her kids, and then she hit rock bottom when she contracted HIV from a contaminated needle.

This was a devastating wake-up call and was the push Sandy needed to leave her boyfriend and her drug habit behind.

Sandy had been clean for the last two years and was slowly rebuilding her life, but she would always be HIV positive and so she had to be careful.

She had a weakened immune system, which is why she suffered a shingles outbreak in the first place.

And so standing there looking in the mirror at these awful new blisters, Sandy decided she would call her doctor the second she got to work, just to make sure these blisters were not a sign of anything more serious.

A few days later, Sandy was running around her house again, microwaving oatmeal while pouring herself a cup of coffee.

She grabbed a pill bottle from beside the coffee maker, opened it up, coaxed out a tablet, and then drank it down with a glass of water.

It was the antiviral medication that her physician, Dr.

John Douglas, had prescribed for her blisters.

Dr.

Douglas had confirmed that Sandy's rash was indeed another episode of Shingles, and he told her she'd feel better in a few days with this medication.

Sandy took her coffee into the bathroom and set it on the sink and then inspected her head in the mirror.

The blisters were already fading, which was a huge relief.

And that sharp stab of pain she had felt right when the comb had touched her scalp that first time had subsided.

But there was one weird new thing.

The stabbing pain had been replaced by a persistent itch in her head that Sandy just could not seem to scratch.

The previous night, she'd sat in front of the TV and put a bag of frozen peas right on her head, hoping that would numb the itch and make it go away.

But it didn't.

And now this morning, it was still there.

And so Sandy grabbed her hairbrush and began combing her hair, but as she did, she intentionally applied more pressure to try to scratch this phantom itch.

And the bristles felt so good on her scalp as she did this that she lost track of time.

When Sandy finally realized what time it was, she jumped.

She had to go or she'd be late to work for the second time this week.

Since getting clean, Sandy really prided herself on punctuality, and so despite wanting to keep trying to itch her scalp, she tossed the brush down and got going.

But several days later, the itch in Sandy's head was so bad that Sandy decided to go back to Dr.

Douglas's office.

When she got there, Dr.

Douglas parted Sandy's hair to get a better look at her scalp.

While Sandy explained that when she first started taking the shingles medication, her itch had been ongoing but low-grade.

She could live with it.

But over the last few days, the itch had changed.

Now it wasn't like her scalp was itching.

It was like the itch was coming from inside of her head.

And so no matter how hard she tried to scratch at this thing, the burning, tingling itch would not go away.

It was driving her insane.

Dr.

Douglas told her that itching was actually a very common symptom for all kinds of skin conditions.

An allergic reaction, bacterial or fungal infection, psoriasis, sun damage, even dry skin.

All of them can cause a chronic need to scratch.

But Dr.

Douglas told Sandy that, beyond the fading shingle splisters on her head, he wasn't seeing anything abnormal on her scalp.

So he wanted to try a medicated cream to try to soothe the itch and take care of any topical skin conditions that might be forming before the problem got any worse.

A few weeks later, Sandy woke up a little bit before dawn.

Her room was still dark, so she rolled over to go back to sleep.

But her cheek landed on something that felt wet and strange.

Confused, she turned on her bedside lamp and gasped in horror.

Blood and hunks of hair lay scattered across her pillowcase.

She instinctively reached for her head and she felt something sticky right at the itchy spot just above her right temple.

Horrified, she jumped out of bed and ran to her bathroom mirror.

The itchy patch was bleeding and the hair around that area was noticeably thin, which explained the hunks of hair on her pillow.

And on top of all that, her head still itched.

In fact, the itch had only gotten worse over the past few weeks, despite the medicated cream that Dr.

Douglas had prescribed her.

Though it was difficult, she was able to resist scratching her scalp when she was awake.

But now it seemed like in her sleep, she had somehow scratched her scalp into a bloody mess and ripped her own hair out.

The very idea of her doing that made her nauseous.

A few hours later, Sandy was back inside of Dr.

Douglas' office, now awaiting the results of something called a viral load test, which measures the amount of HIV in the blood.

Dr.

Douglas was concerned that this itch she was having was a sign that her HIV could be getting worse.

Dr.

Douglas walked into the exam room and set his clipboard on the desk.

He told Sandy that there was some good news.

Her HIV was actually inactive and showed no signs of progressing.

So whatever was causing this itch very likely had nothing to do with her HIV.

Dr.

Douglas had also ordered additional blood tests and x-rays, but those had also come back normal.

Sandy felt a weight lift off her shoulders, but it was short-lived, because then Dr.

Douglas delivered his diagnosis.

He suspected that Sandy's itch might actually be a symptom of a psychiatric condition instead of a physical ailment.

He thought she might have a condition called trichotillomania.

It's an obsessive-compulsive disorder in which patients have an irresistible urge to pull their own hair out.

Obsessive-compulsive disorder, or OCD for short, is when someone has unreasonable thoughts or obsessions that can lead to compulsive behavior.

And so they were suggesting that Sandy had a version of that.

Sandy was immediately skeptical.

She told Dr.

Douglas that she didn't actually have the urge to pull her hair out.

She just had an itchy scalp.

But Dr.

Douglas still wanted to try treating her for turchotillomania.

And so he prescribed her antidepressants that were used to treat obsessive-compulsive disorder, and hopefully they would help her manage the urge to itch.

Sandy still felt very unsure about this, but at this point, she was willing to try anything to save her scalp.

Three weeks later, when Sandy's alarm clock went off, she felt awful and groggy, and she slammed her hand down on it to make it quiet, and then she sat up to get out of bed.

And as she did, she felt thick liquid running down her face.

At first, she was worried it might be blood, and so instinctively she wiped it off her face to check.

But when she looked at her hand, it was not a red viscous liquid.

It was pale green and runny.

And so she went to check her itchy spot in the bathroom mirror, but when she looked, all she could see was all this gunk on her scalp, and it terrified her.

Sandy grabbed some gauze from her medicine cabinet and dabbed it gently on her scalp, trying to absorb some of the greenish goo.

Then she picked up the phone and called Dr.

Douglas, and thankfully, he was free for an immediate appointment.

Once Sandy got to his office, Dr.

Douglas inspected her scalp with a flashlight.

Sandy could feel him pressing around the itchy spot with gloved fingers.

And then at some point, he clicked off the flashlight and promptly told Sandy that he was calling an ambulance, and then he hurried out to get her charts updated before she could ask any questions.

An hour later, Sandy was in the hospital with emergency room doctors and nurses crowded all around her, prepping her for emergency surgery.

Sandy was so scared, she thought she might have a heart attack.

She asked one of the doctors what was going on.

He looked up from what he was doing and gave Sandy an alarmingly blunt answer.

He explained that she clearly had been scratching her scalp in her sleep, so much so that the raw tissue had grown infected, and that infection had softened her skullbone enough that Sandy had scratched all the way through it during the night.

and she'd managed to now scratch into her brain.

The greenish goo was infected cerebrospinal fluid, the doctor said.

That is the liquid that cushions and protects the brain.

Now they were worried that Sandy's scalp infection could reach her brain, and so they had to get her to the operating room before Sandy suffered extensive and lasting brain damage.

Later that afternoon, Sandy felt lightheaded and bleary-eyed as she woke up and looked around her hospital room.

The trauma of her morning came rushing back to her, and so instinctively she patted the top of her head, and she found it was wrapped in layers of gauze.

Then she noticed her thigh was bandaged too.

She wondered if she banged up her legs somehow.

Just then, a doctor appeared at the doorway and came to her bedside.

He first asked Sandy how she was feeling, and Sandy said she was really just confused and didn't know what was going on.

And then the doctor explained what had just happened.

They told her that a neurosurgeon had washed out Sandy's wound on her head.

and removed all the damaged tissue.

Then a plastic surgeon had covered the wound with a graft of skin skin from her thigh.

The entire procedure had gone well.

Sandy just needed to give her body time to heal.

Sandy was shocked, but thanked the doctor, and then closed her eyes, enjoying the warm, cozy hug of anesthesia.

But a few minutes later, as the anesthetic began to wear off, a tiny little itch began to simmer beneath her bandages on her head, growing sharper and wider until it was almost unbearable.

Sandy gripped either side of her hospital bed, fighting the urge to scratch.

She pressed the call button and then gritted her teeth until a nurse came into the room.

Sandy explained the problem and pleaded for more anesthetic to curb this itch, or anything, really, just to keep her from scratching her scalp.

The nurse promised to see what she could do, but warned Sandy they couldn't just give out anesthetic as a painkiller.

They'd have to find another way to help her.

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Almost a week later, a new doctor stood at Sandy's bedside.

He introduced himself to her as Dr.

Baker, a member of the hospital's psychiatric team.

Sandy knew why he'd been called to see her.

She had awoken in the hospital bed with blood covering her pillow.

She'd scratched all the way through her new skin graft.

So they'd taken her into surgery to give her a second one.

And so now she had bandages not just on her head and right thigh, but also on her left thigh, where they pulled the second skin graft from.

But by this morning, she had scratched through the second skin graft as well.

Even though the hospital was wrapping her hands in gauze every night before she went to sleep to prevent her from scratching through her skin grafts, While she was sleeping, she couldn't stop herself from scratching.

She could resist the urge to scratch during the day, but she became a danger to herself the moment she fell asleep.

It was like instinct was taking over.

Dr.

Baker knew all of this and gave Sandy an encouraging smile when he saw her, but he told her that he still agreed with Dr.

Douglas.

She must have some form of OCD.

In Sandy's case, her compulsive behavior was scratching her head.

Dr.

Baker told Sandy that he wanted to interview her family about her habits prior to coming to the hospital.

He also wanted to give Sandy a a psychiatric evaluation to confirm her diagnosis.

And in the meantime, he was going to start her on drugs that would make her feel groggy and help her sleep, in the hopes that that would keep her from scratching.

Sandy was resigned and just nodded and thanked Dr.

Baker for his help.

And then that day, she began the sleepy medication, but the next morning, she still woke up to find blood on her pillow.

The medication was not stopping her from scratching while she slept.

A few weeks later, a neurologist named Mary Evans stood over Sandy in her hospital room, carefully examining her wound.

Dr.

Evans treated diseases of the nervous system, including the brain and spinal cord.

Dr.

Evans knew that the hospital had already given Sandy a psychiatric evaluation and concluded that her unbearable itch was a sign of mental illness.

But she also knew that the evidence they'd collected so far from family and friends made it seem very unlikely that Sandy had OCD.

So the psychiatric team had called Dr.

Evans from neurology to consult on Sandy's case.

Dr.

Evans inspected the graft over Sandy's head wound.

It seemed to be healing okay.

Dr.

Evans took out a small aerosol can with a long red tube attached and sprayed a sharp blast of cold air onto Sandy's wound.

She asked Sandy if that felt cold, but Sandy just shook her head and said no.

She said she could tell that Dr.

Evans had sprayed her with something, but could not feel the temperature shift.

She also couldn't feel Dr.

Evans' fingertips while she was patting the wound.

Dr.

Evans was puzzled.

Sandy couldn't feel any physical sensation when someone touched her wound, and yet the wound was itchy to her.

That shouldn't be possible, Dr.

Evans thought.

Except that the doctor had actually seen this in another Shingles patient a while ago.

That patient was tormented by an insatiable itch over her eye.

It was so bad that that patient actually scratched off her own eyebrow.

Dr.

Evans told Sandy that she didn't actually think she had had OCD, and so she wanted to try a few other treatment options.

At this point, Dr.

Evans could tell that Sandy was both exhausted and deeply discouraged.

She seemed desperate to relieve the itch, but also tired of being poked and prodded.

And so Dr.

Evans promised that these treatments would be virtually painless.

Dr.

Evans grabbed a syringe of local anesthetic from a metal tray near Sandy's bedside.

She injected a few drops to the area around Sandy's scalp to make it numb.

Within a few minutes, Sandy's eyes went wide and she grinned from ear to ear.

She said the itch was gone, just like when she'd gotten out of her first skin graft.

Sandy looked so happy, she seemed like she might cry.

Dr.

Evans returned her smile.

She suspected that Sandy's itch was a physical problem, not a psychiatric one.

And this little test confirmed her theory.

She warned Sandy that the itch would return as soon as the anesthetic wore off.

At that point, they could try an anesthetic patch, but the effects of that wouldn't last very long either.

Dr.

Evans wanted to try and learn more by taking a sample of the itchy skin.

Hopefully, she'd be able to solve this problem once and for all.

A few days later, Sandy sat up in her hospital bed going over her biopsy results with Dr.

Evans.

They showed that 96% of the nerve fibers in Sandy's itchy skin patch had been destroyed.

That meant Sandy shouldn't be able to feel anything around the itchy spot on her scalp.

And yet, her itch was as intense as ever.

And so Dr.

Evans told Sandy that she was going to call a neurosurgeon to get a second opinion.

A few hours later, that neurosurgeon came into Sandy's room with Dr.

Evans by his side.

The neurosurgeon suggested that something must have gone haywire in Sandy's nervous system, causing her to feel a phantom itch in a part of her scalp where there were virtually no nerve cells.

The neurosurgeon hoped that if they cut the main sensory nerve connecting the front of Sandy's scalp to her brain, the itching sensation would go away.

But Dr.

Evans didn't look so sure.

She worried that if they went forward with that surgery, Sandy would lose more feeling in her scalp, but potentially still have the itch.

Sandy understood that this surgery was risky, but she was desperate.

She told both doctors that she needed some time to think about it.

And for the next six hours, that was all she did.

She laid in bed staring at the ceiling, weighing out her options, while simultaneously doing her best to ignore the constant, incessant itch.

Sandy thought about what life would be like if she had no more feeling in a large part of her scalp and forehead, and it made her want to cry.

But at the same time, she was so frustrated with this whole situation, she was going mad.

It took everything, every minute of every day to keep herself from scratching and scratching until she tore the nerve right out herself.

She couldn't keep living like this.

She was scared and nervous.

But more than anything, she was just tired and done with this itch.

And so, if there was even the slightest chance that cutting that nerve would stop the itch for good, Sandy was willing to try it.

A few weeks later, Sandy stood over the sink in her hospital room getting ready for bed.

After washing her face and brushing her teeth, she grabbed a bulky foam football helmet from her bedside table and put it around the gauze that was still wrapped around her head.

Sandy had to wear this helmet, otherwise, she would rub her head against the pillows while she slept in an effort to scratch her scalp.

She climbed into bed, and a few minutes later, a nurse came in and slipped Sandy's wrists into the padded cuffs that were now attached to rails on her bed.

After she was restrained, Sandy closed her eyes, trying to get some sleep.

For two blissful weeks following Sandy's surgery, the itch had been gone.

And then it returned with a vengeance.

And this time, no amount of pain medications or psychiatric suggestions could get it to subside.

Even local anesthetic had stopped working.

It was absolutely miserable.

Sandy felt awful all the time and was depressed and felt so far from recovery.

Now, the only way she could keep herself from scratching her scalp at night was to have the nurses literally bind her wrists to her bedrails.

But she hated being awake 24-7 even more.

She broke down crying in frustration all the time.

She could hear herself growing irritable and snapping at people who didn't deserve it.

She was mad at herself for her behavior, but she also just felt totally overwhelmed by the stupid itch and the thought that she might never ever be free from it.

Sandy began to wonder if her first doctor had been right.

That all of this was just a symptom of OCD.

Maybe with the right OCD treatment, her itch would go away again.

It was her last hope.

because she knew she simply couldn't live another 30 or 40 years with an incessant itch driving her mad.

She simply couldn't do it.

Sandy began to sob.

She'd been to rehab years ago to kick her heroin habit, and that experience had totally changed her life for the better.

And so she decided that when she woke up in the morning, she would check herself into a different kind of hospital, a rehab hospital for psychiatric illnesses.

Nine years later, in 2008, Sandy heard her doorbell ring.

She slowly crossed the living room of her small apartment in Boston and checked her hair in the tiny mirror next to her front door.

She opened the door and greeted her guest, a doctor and popular medical writer named Atul Gawande.

Dr.

Gawande was writing an article for the New Yorker magazine on the physiology of itching and was interested in Sandy's case.

And when he called her a few weeks ago, she said she was happy to talk about it.

It had been seven years since Sandy left the locked mental ward at a Boston rehabilitation hospital.

She'd spent a staggering two years in rehab because she was considered a danger to herself.

For a while, just like at the previous hospital, they had bound her hands to her bed every night to keep her from scratching at her scalp in her sleep.

It had taken months to work out a more humane system.

Sandy wore her helmet to bed, along with big white mitts that the staff would fasten to her wrists.

It made her feel like Toad from Super Mario Bros.

But Sandy certainly did not feel at all like a video game character.

The repeated injury to her brain from scratching had left her partially paralyzed, so she was confined to a wheelchair.

Sandy led Dr.

Gawande into the living room.

He took a seat on the couch, and Sandy rolled her wheelchair right next to him, and then Dr.

Gawande pulled out a tape recorder and a notebook for the interview that they'd scheduled.

As they began talking, Sandy told him that even right now, her itch was bothering her, but she was coping.

She found ways to distract herself, like watching her favorite TV shows and keeping up with friends over the phone.

Sandy then held up one of her hands to show the doctor how short she kept her fingernails.

She told him she did this so that if she did scratch her scalp during her sleep, the short nails would hopefully limit the damage.

And then during the daytime, if the itch ever got really bad, she would rub it instead of scratching it, or use a soft toothbrush or towel.

At this point, she said she wasn't trying to cure it.

She was just trying to find a way to live with it.

At the end of the interview, Dr.

Gawande thanked Sandy for her candor and promised he would be in touch.

He had some ideas about Sandy's condition, but he wasn't quite ready to share them.

When he finally published his article, though, his theory about what was going on with Sandy was unlike anything any of Sandy's doctors had ever proposed.

In Dr.

Gawande's article, he suggested that Sandy's itch might be caused by a little-known condition called sensor syndrome.

It's similar to phantom pain experienced by some people who who have lost limbs to disease or war injuries.

Just like an amputee who feels pain in a part of the limb that was removed, Dr.

Gawande wondered if maybe Sandy's brain was telling her she had this itch, even though there were literally no nerves there for her to scratch.

In the article, Dr.

Gawande described a therapy developed by one of his colleagues to help people with this kind of problem.

really specifically people who had phantom pain.

The colleague, a neuroscientist, used mirrors to trick his patients' brains brains into resetting their sensory systems.

By angling a mirror a certain way, the reflection could make it look like their missing limb was actually still there, which helped the patients rewire the way their brains processed information.

In other words, the mirrors made their brains see what they needed to see to think that their arms and legs were fine.

Dr.

Gawande thought a similar concept could help Sandy.

After speaking to Sandy and gauging her interest in potentially trying this therapy, Dr.

Gawande called his colleague who did mirror therapy, and the colleague agreed that Dr.

Gaoande might be onto something.

He suggested that maybe a pair of mirrors could be arranged in a way where Sandy's reflection wasn't reversed, so that left is right and right is left, like it is in a normal reflection.

That way, when she looked into this particular mirror, the itchy side of Sandy's head wouldn't itch at all.

signaling to her brain to stop scratching there.

And then theoretically, over time, the itch would eventually go away.

But critically, for this therapy to work, Sandy would have to know she was doing, quote, mirror therapy, but wouldn't know that the mirror was reversed.

She would think it was a normal mirror.

That's the only way you could actually trick her brain.

Dr.

Gwande's article about Sandy and the physiology of itching was published in the New Yorker and has since been reprinted over and over, giving new hope to people who suffer from this wildly frustrating condition.

It's prompted many doctors to rethink the way they treat chronic itching, one of the most common symptoms in all of medicine.

Unfortunately, we don't actually know whether Sandy tried mirror treatment because Dr.

Gwande never found out.

And so as a result, we actually don't know if she still has the itch or if it's gone away.

We don't know.

However, what we do know, which stems from this article in Dr.

Gwande's research, is that other people who have had very similar symptoms to Sandy, these sort of chronic phantom itches, if you will, have been cured through mirror treatment.

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From Balin Studios and Wondry, this is Mr.

Balin's Medical Mysteries, hosted by me, Mr.

Balin.

A quick note about our stories.

They are all inspired by true events, but we do sometimes use pseudonyms to protect the people involved, and also some details are fictionalized for dramatic purposes.

And a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

This episode was written by Aaron Land.

Our editor is Heather Dundas.

Sound design is by Matthew Calelli.

Our senior managing producer is Nick Ryan.

And our coordinating producer is Taylor Sniffin.

Our senior producer is Alex Benedon.

Our associate producers and researchers are Sarah Vitak and Tayshia Palaconda.

Fact-checking was done by Sheila Patterson.

For Ballin Studios, our head of production is Zach Levitt.

Script editing by Scott Allen and Evan Allen.

Our coordinating producer is Samantha Collins.

Production support by Avery Siegel.

Executive producers are myself, Mr.

Ballin, and also Nick Witters.

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Our executive producers are Aaron O'Flaherty and Marshall Louie for Wondry.