The agony of opioid withdrawal and what doctors should tell patients about it Travis Rieder
“How much pain medication are you taking?”
That was the very routine question
that changed my life.
It was July 2015,
about two months after
I nearly lost my foot
in a serious motorcycle accident.
So I was back in my orthopedic
surgeon’s office
for yet another follow-up appointment.
I looked at my wife, Sadiye;
we did some calculating.
“About 115 milligrams
oxycodone,” I responded.
“Maybe more.”
I was nonchalant, having given
this information to many doctors
many times before,
but this time was different.
My doctor turned serious
and he looked at me and said,
“Travis, that’s a lot of opioids.
You need to think
about getting off the meds now.”
In two months of escalating prescriptions,
this was the first time
that anyone had expressed concern.
Indeed, this was the first
real conversation I’d had
about my opioid therapy, period.
I had been given no warnings,
no counseling,
no plan …
just lots and lots of prescriptions.
What happened next really came to define
my entire experience of medical trauma.
I was given what I now know
is a much too aggressive tapering regimen,
according to which I divided
my medication into four doses,
dropping one each week
over the course of the month.
The result is that I was launched
into acute opioid withdrawal.
The result, put another way,
was hell.
The early stages of withdrawal
feel a lot like a bad case of the flu.
I became nauseated,
lost my appetite,
I ached everywhere,
had increased pain
in my rather mangled foot;
I developed trouble sleeping
due to a general feeling of restlessness.
At the time,
I thought this was all pretty miserable.
That’s because I didn’t know
what was coming.
At the beginning of week two,
my life got much worse.
As the symptoms dialed up in intensity,
my internal thermostat
seemed to go haywire.
I would sweat profusely almost constantly,
and yet if I managed to get myself out
into the hot August sun,
I might look down and find myself
covered in goosebumps.
The restlessness that had made
sleep difficult during that first week
now turned into what I came to think of
as the withdrawal feeling.
It was a deep sense of jitters
that would keep me twitching.
It made sleep nearly impossible.
But perhaps the most
disturbing was the crying.
I would find myself with tears coming on
for seemingly no reason
and with no warning.
At the time they felt
like a neural misfire,
similar to the goosebumps.
Sadiye became concerned,
and she called the prescribing doctor
who very helpfully advised
lots of fluids for the nausea.
When she pushed him and said,
“You know, he’s really quite badly off,”
the doctor responded,
“Well, if it’s that bad,
he can just go back to his
previous dose for a little while.”
“And then what?” I wondered.
“Try again later,” he responded.
Now, there’s no way that I was going
to go back on my previous dose
unless I had a better plan for making
it through the withdrawal next time.
And so we stuck to riding it out
and dropped another dose.
At the beginning of week three,
my world got very dark.
I basically stopped eating,
and I barely slept at all
thanks to the jitters
that would keep me writhing all night.
But the worst –
the worst was the depression.
The tears that had felt
like a misfire before
now felt meaningful.
Several times a day
I would get that welling in my chest
where you know the tears are coming,
but I couldn’t stop them
and with them came
desperation and hopelessness.
I began to believe
that I would never recover
either from the accident
or from the withdrawal.
Sadiye got back on the phone
with the prescriber
and this time he recommended
that we contact our pain management team
from the last hospitalization.
That sounded like a great idea,
so we did that immediately,
and we were shocked
when nobody would speak with us.
The receptionist who answered
the phone advised us
that the pain management team
provides an inpatient service;
although they prescribe opioids
to get pain under control,
they do not oversee
tapering and withdrawal.
Furious, we called the prescriber back
and begged him for anything –
anything that could help me –
but instead he apologized,
saying that he was out of his depth.
“Look,” he told us,
“my initial advice to you is clearly bad,
so my official recommendation
is that Travis go back on the medication
until he can find someone
more competent to wean him off.”
Of course I wanted
to go back on the medication.
I was in agony.
But I believed that if I saved
myself from the withdrawal with the drugs
that I would never be free of them,
and so we buckled ourselves in,
and I dropped the last dose.
As my brain experienced life
without prescription opioids
for the first time in months,
I thought I would die.
I assumed I would die –
(Crying)
I’m sorry.
(Crying)
Because if the symptoms
didn’t kill me outright,
I’d kill myself.
And I know that sounds dramatic,
because to me,
standing up here years later,
whole and healthy –
to me, it sounds dramatic.
But I believed it to my core
because I no longer had any hope
that I would be normal again.
The insomnia became unbearable
and after two days
with virtually no sleep,
I spent a whole night
on the floor of our basement bathroom.
I alternated between cooling
my feverish head
against the ceramic tiles
and trying violently to throw up
despite not having eaten anything in days.
When Sadiye found me
at the end of the night
she was horrified,
and we got back on the phone.
We called everyone.
We called surgeons and pain docs
and general practitioners –
anyone we could find on the internet,
and not a single one of them
would help me.
The few that we could
speak with on the phone
advised us to go back on the medication.
An independent pain management clinic
said that they prescribe opioids
but they don’t oversee
tapering or withdrawal.
When my desperation
was clearly coming through my voice,
much as it is now,
the receptionist
took a deep breath and said,
“Mr. Rieder, it sounds like perhaps
what you need is a rehab facility
or a methadone clinic.”
I didn’t know any better at the time,
so I took her advice.
I hung up and I started
calling those places,
but it took me virtually no time at all
to discover that many of these facilities
are geared towards those battling
long-term substance use disorder.
In the case of opioids,
this often involves precisely not
weaning the patient off the medication,
but transitioning them
onto the safer, longer-acting opioids:
methadone or buprenorphine
for maintenance treatment.
In addition, everywhere I called
had an extensive waiting list.
I was simply not the kind of patient
they were designed to see.
After being turned away
from a rehab facility,
I finally admitted defeat.
I was broken and beaten,
and I couldn’t do it anymore.
So I told Sadiye that I was
going back on the medication.
I would start with
the lowest dose possible,
and I would take only as much
as I absolutely needed
to escape the most crippling
effects of the withdrawal.
So that night she helped me up the stairs
and for the first time in weeks
I actually went to bed.
I took the little orange
prescription bottle,
I set it on my nightstand …
and then I didn’t touch it.
I fell asleep,
I slept through the night
and when I woke up,
the most severe symptoms
had abated dramatically.
I’d made it out.
(Applause)
Thanks for that,
that was my response, too.
(Laughter)
So –
I’m sorry, I have to gather myself
just a little bit.
I think this story is important.
It’s not because I think I’m special.
This story is important
precisely because I’m not special;
because nothing that happened
to me was all that unique.
My dependence on opioids
was entirely predictable
given the amount that I was prescribed
and the duration
for which I was prescribed it.
Dependence is simply the brain’s natural
response to an opioid-rich environment
and so there was every reason
to think that from the beginning,
I would need a supervised,
well-formed tapering plan,
but our health care system
seemingly hasn’t decided
who’s responsible for patients like me.
The prescribers saw me
as a complex patient
needing specialized care,
probably from pain medicine.
The pain docs saw their job
as getting pain under control
and when I couldn’t
get off the medication,
they saw me as the purview
of addiction medicine.
But addiction medicine is overstressed
and focused on those suffering
from long-term substance use disorder.
In short, I was prescribed a drug
that needed long-term management
and then I wasn’t given that management,
and it wasn’t even clear
whose job such management was.
This is a recipe for disaster
and any such disaster would be interesting
and worth talking about –
probably worth a TED Talk –
but the failure of opioid tapering
is a particular concern
at this moment in America
because we are in the midst of an epidemic
in which 33,000 people died
from overdose in 2015.
Nearly half of those deaths
involved prescription opioids.
The medical community has in fact
started to react to this crisis,
but much of their response has involved
trying to prescribe fewer pills –
and absolutely,
that’s going to be important.
So for instance,
we’re now gaining evidence
that American physicians
often prescribe medication
even when it’s not necessary
in the case of opioids.
And even when opioids are called for,
they often prescribe
much more than is needed.
These sorts of considerations
help to explain why America,
despite accounting for only five percent
of the global population,
consumes nearly 70 percent
of the total global opioid supply.
But focusing only
on the rate of prescribing
risks overlooking
two crucially important points.
The first is that opioids just are
and will continue to be
important pain therapies.
As somebody who has had
severe, real, long-lasting pain,
I can assure you these medications
can make life worth living.
And second:
we can still fight the epidemic
while judiciously prescribing opioids
to people who really need them
by requiring that doctors properly
manage the pills that they do prescribe.
So for instance,
go back to the tapering regimen
that I was given.
Is it reasonable to expect
that any physician who prescribes opioids
knows that that is too aggressive?
Well, after I initially published my story
in an academic journal,
someone from the CDC sent me
their pocket guide for tapering opioids.
This is a four-page document,
and most of it’s pictures.
In it, they teach physicians
how to taper opioids in the easier cases,
and one of the their recommendations
is that you never start at more
than a 10 percent dose reduction per week.
If my physician had given me that plan,
my taper would have taken several months
instead of a few weeks.
I’m sure it wouldn’t have been easy.
It probably would have been
pretty uncomfortable,
but maybe it wouldn’t have been hell.
And that seems like
the kind of information
that someone who prescribes
this medication ought to have.
In closing,
I need to say that properly managing
prescribed opioids
will not by itself solve the crisis.
America’s epidemic
is far bigger than that,
but when a medication is responsible
for tens of thousands of deaths a year,
reckless management
of that medication is indefensible.
Helping opioid therapy patients
to get off the medication
that they were prescribed
may not be a complete solution
to our epidemic,
but it would clearly constitute progress.
Thank you.
(Applause)