Sleep, riches, and health, to be truly enjoyed, must be interrupted.
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The appointment was for one George Mitner, age 65. He came with his wife Sophie,
who is a few years younger.
Mr. Mitner's referral to a sleep specialist was typically convoluted.
On paper his internist, Dr. Randolph, made the referral.
What actually happened was this: His wife had offered
the above complaint on a visit to her physician, Dr. Epstein, who then said:
'Why don't you have your husband see Dr. Martin?' To see me under his insurance plan
Mr. Mitner had to be referred by Dr. Randolph, whom Mrs. Mitner called. She
spoke with Dr. Randolph's nurse, who wrote out the referral form (after consulting
with Dr. Randolph). Thus at the time of his visit to me, no physician had actually
seen Mr. Mitner for his wife's complaint.
The ultimate trigger for the referral was the phrase "during sleep."
Anything related to these two words has become, by default, the province of
the sleep specialist -- apart from conditions obviously related to heart
or lung disease, such as a heart or asthma attack. Almost any general
complaint will do. You could substitute "he kicks me" with "he snores" or
"he dances" or "he talks of cabbages and kings" -- and a sleep referral would
likely (and appropriately) follow. That's what sleep specialists are for.
Sleep specialists take a sleep history,
order appropriate tests, and (hopefully) make a correct diagnosis. We
often have to take two histories, probably more often
than in any other field apart from pediatrics. First, what's the patient's
problem, and how does it affect him/her during night and day?
Second, what's the bed partner's complaint, and how does it affect him/her
during night and day?
Mr. Mitner is 5'9", and weighs 220 lbs. He and his wife are originally from Eastern
Europe; they emigrated to the US about 25 years ago. Both speak good English
but with a heavy accent. He is a retired machinist. His wife has been a homemaker.
Their kids are grown.
He doesn't look particularly healthy. He is overweight, with a pot belly, and
walks slowly. His medical history includes coronary artery disease (angioplasty
10 years earlier) and high blood pressure. For these
conditions he takes 3 different medications (Norvasc, Dyazide, Cardizem).
I ask, rhetorically, "So Dr. Randolph (his internist) referred you?" The
question is a puzzler to Mr. Mitner, who is not sure what his problem is or how he came
to be in my office. He looks to his wife, who then speaks. She is also overweight,
looks to be in her early 60s and wears no makeup. Side by
side, she is more animated and talkative than her husband.
"Yes, hisa doctor said he could come. He kicks me all night. I can't not
sleep, doctor."
"Mr. Mitner, do you know about this?"
"She tells me about the kicking, but I don't know," and he shrugs his shoulders.
"When did this problem begin?"
"A long time," she says. "Two, maybe three, four years ago. I can't not sleep
with him sometimes, he always akicking me," and she thrusts out her right leg several
times to demonstrate. She gives a faint smile, as if somewhat embarrassed by the
revelation.
I look at Mr. Mitner. "And you aren't aware of this?"
"To tell you the truth, doctor, I sometimes have trouble with my legs at night,
but it doesn't bother me. But kicking her, no, I'm not aware of that, no."
"Well, what kind of trouble? With your legs, I mean?"
"You know, sometimes my feet, my legs, they itch and tingle. So I get up,
walk around, it goes away. Like that. But it don't bother me none."
"Does it bother you during the day?"
"No, not when I stay busy, just when I lay down, about to go to sleep. Sometimes
during the day too, if I lay on the couch."
"Who have you seen for this problem before?" I ask. My question may seem a little
aggressive (not "did you see someone for his problem?"), but it avoids a big mistake
in medical-history taking: the dead-end 'yes' or 'no' question. For
example, ask
"Do you smoke?" and the patient may truthfully answer "No," omitting that he quit just the day before. I want Mr. Mitner to answer in a way
that assures me this problem has not already been evaluated.
"Who did I see for what problem?"
"Your leg problem, the one you just said, where your legs itch, you have to walk
around."
"I don't see anyone for this. It's nothing."
"No doctor ever gave you medication for this?"
The reader might reasonably be asking, 'Why don't you just
check his medical record instead of badgering the patient?' This is not an
unreasonable question, to which I (or any physician) can honestly reply:
a) the available medical record is for one clinic only, and
patients with chronic medical conditions (like Mr. Mitner)
usually have received care in multiple venues over the years;
b) the available record is (almost invariably)
paper-based and poorly (if at all) indexed,
which makes a detailed search futile (one can either care for patients or spend
time searching records, but not both -- at least not at the first visit); c) I am not badgering
the patient but instead showing a real interest in his medical history.
Too often busy physicians don't ask detailed questions about past medical history,
and so miss valuable information.
"No. I takesa medicine for my heart, that's all."
"Did you ever take medicine for sugar? For diabetes?"
"No, no sugar."
"Mrs. Mitner, how often does this kicking happen?"
"Every night, doctor. He kicks me every night."
"How big is your bed?"
"It's a queen size bed, like we always have."
"What do you do when he kicks you?"
"Sometimes I have to go on the couch. He don't know, he's snoring."
Well, I think, if it doesn't bother him, they could sleep in separate beds, or
buy a king-sized bed; either might be a reasonable solution.
"Do you think a bigger bed might help?"
The thought has clearly never crossed her mind. She looks at me as if I've
asked her to move out of the house and divorce her husband.
"Whatsa wrong with him, why he kick-kick-kick so much? Can't you give him
a medication?"
She has assumed this is truly a medical problem, and wants a medical solution,
not one based on furniture. For his part, Mr. Mitner seems unconcerned about
any real problem.
The Mitners have presented me with a medical conundrum: Does he have a medical
condition requiring diagnosis and treatment? There are two possible "diagnoses" in his
case, and they often overlap:
Restless legs syndrome (RLS) and
Periodic Limb Movements
during Sleep (PLMS). Unfortunately RLS and PLMS are among the most
confusing diagnoses in the field of sleep medicine.
Mention sleep apnea,
narcolepsy, or
insomnia to most
general physicians, and they will know something about the condition.
Mention PLMS and you are apt to draw a blank stare. And with good reason.
Even experts can't agree on what it means to move your legs during sleep,
if it is abnormal or how to treat a patient when leg movement disturbs sleep.
But restless legs syndrome is real, and so well recognized -- by its sufferers if
not physicians - that there are numerous web sites (see Table below). There are
also books on the subject for the general public, at least one of which is
highly recommended (in Table).
RLS (occurring just before sleep or while awakened from sleep)
and PLMS are part of a large category of Sleep Related Movement Disorders.
Also in this group, but less common, are sleep related: leg cramps, teeth
grinding (bruxism), rhythmic movement disorder, and abnormal movements related
to drugs or a medical condition.
Fifteen minutes into the interview I realize Mr. Mitner may have both
RLS and PLMS. It will be helpful to provide
some comparisons between the two conditions at this point.
RESTLESS LEGS SYNDROME (RLS) |
PERIODIC LIMB MOVEMENTS OF SLEEP (PLMS) |
Limb symptoms (usually legs) -- only while awake but often exacerbated at bedtime, just before falling asleep, or during awake periods through the night | Limb movements (usually legs) -- only while asleep |
Symptoms: involuntary movement of legs, feelings of pins and needles; usually goes away with walking or voluntary movement | Involuntary movement of legs; person unaware as it occurs during sleep |
May be due to a variety of medical conditions, but more often cause unknown (idiopathic). Some known causes include diseases of the nerves (e.g., polio, Lou Gehrig's disease); anemia; diabetes; cancer; iron deficiency; rheumatoid arthritis. | Same as RLS |
Diagnosed by careful medical history and specific criteria: 1) desire to move the limbs (usually the legs, but arms may also be affected); 2) "pins & needles" sensation in legs (usually between knees and ankles; 3) symptoms exacerbated by rest and relieved by activity; 4) involuntary movements (e.g., brief muscle jerks); 5) worsening of symptoms in evening or bed time | Diagnosed only by a formal sleep study, called a polysomnogram; a specific number and frequency of leg movements seen during the non-REM portion of sleep study will make the diagnosis of PLMS |
Can begin at any age, but prevalence increases gradually each decade; affects anywhere from 9 to 15% of adults, depending on study. Highest prevalence is in middle-aged and elderly | Occasionally seen in childhood, but increasing prevalence with age: about 6% of general population and up to 30% of elderly people have PLMS. True prevalence is unknown; sleep study results in a given individual may vary from night to night |
Overlap: 80% of people with RLS also have PLMS | Overlap: 30% to 50% of people with PLMS also have RLS |
Significance: May be related to an underlying medical condition (see above). As isolated finding, it is more of an annoyance and not considered serious or life-threatening | Significance: Often found in patients who also have sleep apnea or narcolepsy. As an isolated finding, only significant if the leg movements 'awake' the patient to a lighter stage of sleep (called 'arousals') such that there is insufficient deep sleep during the night; in such cases the patient may have excessive daytime sleepiness solely as a result of PLMS |
Currently two drugs are FDA-approved for RLS, both "dopaminergic" agents
(they increase dopamine activity in the nervous system): Ropinirole (Brand name Requip) Pramipexole (Brand name Mirapex) |
No drugs are specifically approved for treatment of PLMS. Sometimes used is clonazepam (brand name Klonopin) 0.5 - 2.0 mg taken at bedtime. |
Non-FDA-approved drugs: Mild to moderate cases: Gabapentin (brand name Neurontin) 300-1800 mgm/day in divided doses, or clonazepam (brand name Klonopin) 0.5-2.0 mgm at bedtime. In severe cases: carbidopa-levodopa (brand name Sinemet) 25/100-100/400 mg/day in divided doses. In refractory cases, patients may take two or three drugs. | Same as for RLS |
Non-drug therapy (anecdotal reports): delaying sleep if symptoms appear in the first hours of sleep; moderate exercise before sleep; hot baths; massage therapy | Same as for RLS |
Web Sites:
RLS,
PLMS |
Same sites (some overlap) |
Recommended book: Sleep Thief: Restless Legs Syndrome | Same book (includes section on PLMS) |
If I am to order a sleep study I will need more information to justify it. As
it turns out, according to Mrs. Mitner her husband's snoring is pretty bad, and on more than
one occasion she has seen him 'stop breathing.' This gives me justification to order a
sleep study, to check for both sleep apnea and PLMS (PLMS is routinely
tested for in a sleep study). After a brief physical exam,
I arrange for a sleep study. I am careful to explain that the study
might not lead to any diagnosis amenable to medication. From my brief chart review and
exam, Mr. Mitner does not appear to have any of the conditions sometimes associated
with RLS/PLMS. In particular, I make sure he is not iron deficient, does not
have diabetes or kidney disease, conditions that commonly lead to leg symptoms.
I also learn that: he quit smoking 10 years earlier, at the time of his angioplasty;
he drinks a few glasses of wine a week; he doesn't drink coffee.
They both leave my office, she relieved that "we are doing something" and he resigned
to do what his wife wishes.
The sleep study is completed two weeks after the office visit. The study is almost
7 and a half hours of data taken on Mt. Mitner, from wires attached to his head (brain
waves), nose (air flow), legs (leg movements), ear (oxygen level) and chest (heart rhythm
and chest wall movements). Despite all these wires, plus a video camera focused on the bed,
Mr. Mitner is able to sleep reasonably well. Out of a total time in bed of 7.4 hours
he sleeps almost 6.7 hours, for a "sleep efficiency" of 90%, which is normal.
I review the study after it has been scored by a technician. 'Scoring' means
that each 30 seconds of data are analyzed for abnormalities, including apnea
episodes, leg movements, and the like. Since the entire study is computerized I can
always go back over any particular period. From the scoring a specific pattern of sleep
emerges. Mr. Mitner does indeed have periodic leg movements of sleep. He moves his legs
quite frequently, as many as 30 times an hour. In this context, a "leg movement" is
usually a sudden bending of his knee or hip associated with a lateral movement of the
limb, then a return to the previous position. For a bed partner to feel these movements
she would have to be close, within about a foot. The leg movements don't cause
him to wake up or have 'arousals', so they remain an isolated finding.
He also has heavy snoring and mild sleep apnea. He stops or slows his breathing about
8 times an hour, but doesn't lower his oxygen level during these episodes enough
to cause any concern.
The other interesting finding is a decrease of REM or rapid eye movement sleep. Normally,
people in their sixties spend about 20% of total sleep time in REM sleep; this is the period
when you tend to dream, and your body is most relaxed. Mr. Mitner spent only about 10%
of his sleep time in REM sleep.
I have a bunch of data and some interesting findings, but what does it all mean? Like
any other lab test, it must be interpreted cautiously, and only in conjunction with the
full clinical picture of the patient.
I see the Mitners in follow up 10 days after the study. "How did the study go?"
I ask.
"I don't know," he says. "They said to ask you."
"Right, I have the study, but how was the night? Did you sleep?"
"Sure, it was OK. I could have slept more, but they came in and turned the lights
on." (Which is true; the sleep techs usually terminate the study about 6:30 - 7:00 a.m.
If not, some people would sleep through the morning.)
Mrs. Mitner has not spoken to this point and I ask her, "Is he still kicking in bed?"
"Sure," she says, with a look that adds 'of course, why should it be any different?'
"Well, let me explain the study to you." I always try to
translate all the data into laymen's language, so people don't come away confused.
"You do move your legs a lot, so your wife is right." She nods her head in agreement.
"We also found that you snored a lot, and sometimes slowed your breathing during sleep,
but not to a severe degree. So the two major findings are one, you move your legs more
than usual, and two, you snore and sometimes slow your breathing."
Neither Mitner says anything but it's obvious they are thinking, 'so, what do
we do about it?'
"There are treatments for both conditions we found in this study,
but in your case I am not sure any treatment is needed."
"But he's still kicking me," she adds.
"Yes, I know, but the treatment is medication, and it might have side effects. He
has what we call "restless legs syndrome," I say. I believe he does have RLS as well
as PLMS, but there is no point confusing them about the differences between the two.
Restless legs
as a term is much easier to comprehend than is
periodic limb
movements, and conveys the underlying problem well enough.
"Mrs. Mitner, medication could be worse than the kicking; you need to know that."
Now he is nodding, happy to be off the hook for another pill.
"The kicking doesn't appear to be bothering him,
and I think it's best to leave it alone, rather than have him take powerful
drugs." This is clearly not a wholly satisfactory outcome for her, but she
can't say I didn't give fair warning.
"As for the slowing of his breathing during sleep,
treating that would require using a tight-fitting face mask during sleep
[CPAP],
and I'm not convinced that's warranted either."
"So what do you suggest?" she asks.
"Well, I suggest two things. First, I would like you to get another opinion, and not
just take my word for it. I want him to see a neurology specialist. That's someone who
specializes in nerves and muscle movements, just to get his opinion. We have a diagnosis,
but he might want to do some more testing. And I know you didn't like
this suggestion before, but if your bedroom will allow it,
you might consider buying a bigger bed. That way you
shouldn't feel his kicking so much. If you could sleep another foot apart from him,
I don't think you would notice his movements."
Before Mrs. Mitner could object I added: "I am not sure your husband has any
real disease, and drugs used to treat leg movements all have side effects. I
think you have to admit that he isn't bothered by this, it only affects you."
She seems clearly disappointed on the one hand, but somewhat relieved that I had
not uncovered any 'disease', so to speak. Anyway, they are more
amenable to the neurology consultation than to the bigger bed. It is not clear if
their bedroom is too small or they don't want to spend the money or just that they
hold out hope for a pill to fix the problem.
I arrange to have his internist (Dr. Randolph) refer him to a neurologist (under
his insurance plan I cannot refer him to another specialist).
REM Behavior Disorder: Violence in the bedroomAn altogether different disorder from restless legs syndrome can result in physical harm to the patient or bed partner. REM behavior disorder is when people 'act out' their dreams during REM sleep. Normally during REM, or rapid eye movement sleep, our muscles have lost tone ('atonia') but our brain is active; during REM is when we do most of our dreaming. In RBD the dreams are violent AND they are able to 'act out' the dreams physically. REM Behavior Disorder was first described in a 1986 medical report (Schenck, et al. Chronic Behavioral Disorders of Human REM Sleep: A New Category of Parasomnia. Sleep 1986;9:293-308). Since 1986 many cases have been reported. The International Classification of Sleep Disorders defines RBD as "the intermittent loss of REM sleep muscle atonia, and by the appearance of elaborate motor activity associated with dreaming." The result can be mayhem. Flailing of arms and legs, wild kicking, yelling, running in bed, attempts at strangling the bed partner -- all have been described in RBD. Patients often wake from these dreams because of self-injury, and there are numerous reports of spouses being injured as well. RBD is predominantly a disorder of older people, usually men above age 60
(although it's reported in women as well).
During the daytime, people with RBD
are mild mannered and not at all violent or aggressive.
About half the patients have underlying neurologic disease, such as cerebrovascular
disease, Parkinson's disease, and cerebral atrophy. Anyone presenting with RBD
needs a neurologic evaluation. In fact, RBD may be the first manifestation of
a progressive neurologic illness. Treatment is difficult, but among the drugs
recommended is the one also used for other parasomnias:
clonazepam (Klonopin) When a spouse complains that 'my husband/wife' kicks me, it is not difficult to distinguish RLS/PLMS from RBD. The history alone will usually suffice (since they are so different), but a sleep study will also show very different results for the two disorders. Web sites for REM behavior disorder: |
I see the Mitners two months later. The neurology workup (including a special nerve conduction study) is completely negative. No diagnosis. Or rather, the diagnosis of idiopathic PLMS is confirmed. The neurologist 'signed off' the case, having no reason to stay involved. Mr. Mitner's problem is back in my ball park, so to speak. Prior to entering the exam room, where they are both waiting, I wonder what to do about her complaint and his condition.
But they have solved the problem. Not a bigger bed. Instead, she sleeps in a second bed room. It was an occasional solution before I ever met them, and now that real disease has been ruled out, and no one is going to prescribe medication, this arrangement fixes the problem - at least husband and wife seem satisfied. I am certainly satisfied. It is always better to solve a problem without costly (and potentially harmful) treatment.