xxvi. Getting a diagnosis

29 December 2005 at 06:00 | Posted in Circadian rhythm | 5 Comments
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Though people who decide to live by their own body clocks
 
 
 
 
deserve a lot of respect, there can be many good reasons to want to get treatment and try to live on the “normal” schedule.  You may feel yourself a bit too old to re-educate yourself for a new line of work.  You may have perfectly normal children who need their parent, awake, in the morning.  You may be unwilling to cut yourself off from your activities, social circle or family. 
 
 Of course, the children who suffer as I did have a place in my heart.  Parents will want to fight on their side.  A proper diagnosis, “this is Delayed Sleep-Phase Syndrome!”, will not be the end of the struggle, but school authorities may be slowed in their labeling, and some new avenues may open up.  Perhaps I’ll write later about one study which resulted in the ADHD label being removed from a number of school children. 
 
Even if you decide to sleep and wake when your body says it’s the right time for you to do so, the “official” diagnosis may be useful.  Accommodations in school and at work are now available or required in several countries.  Perhaps you want to become a polysomnographer, for example, and work nights helping other people who have sleep disorders.  Will you be able to get the necessary education for that, if some required courses are offered only in the a.m.?  Will your employer tolerate your inflexibility when you can’t participate in a meeting at the wrong time? 
 
Each of us must decide whether becoming a patient and getting the disability label will be worth it, remembering that our otherwise good health and resilience probably will not improve as the years go by.  To what degree we are inflexible must also be considered; see my post “The timing of sleep” (number vi.).
 

Finding a doctor

For most of us, the starting point is our “family physician”.  At any mention of “tired” or sleep problems, s/he will first check the routine things:  iron, thyroid etc.  This is wise but can be time-consuming.  If medication is required for these things, one has to check back several times before the blood tests are pronounced satisfactory. 

Do you and your doctor know each other well?  Will your doctor take it kindly if you deliver some print-outs/URLs and suggest that not “just any sleep doctor” will be able to help you?  Will your doctor do the research and find the right specialist or clinic for you, or should you be doing that yourself? 

You will probably need an overnight sleep test to find out if you (also) have apnea or narcolepsy.  Those are the things that “just any” sleep clinic should be able to rule out or determine and treat. 

But if you are quite sure that you have a circadian rhythm disorder, you’ll want to be referred to a specialist or clinic which has expertise and experience in those disorders.  From the experience of myself and others, I can’t stress too strongly how important this is.  To save years of running around, you need to be able to present your sleep diaries to a person who will recognize the problem.

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Next:  xxvii. Two Japanese studies

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xxiii. We interrupt this program…

21 December 2005 at 13:07 | Posted in Circadian rhythm | 12 Comments
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…to bring you a rant.  A moment of rage, if I may.
 
Are any of these so-called sleep doctors competent??  A couple of reports the last few days make me really wonder. 
 
1.  A person who’s struggled for years with DSPS as well as other issues, is a patient at a very well-known medical center.  If anyone should, they ought to know what they are doing.  The clinic sets up an appointment at 10:30 a.m. which, because of a couple hours travel time, entails getting up at 7.  The patient has been fairly stable lately and, not wishing to upset things, asks for a later appointment.  Not possible. 
 
The patient meets at 10:30 and asks the sleep doctor:  “If a sleep clinic can’t accommodate a sleep disorder, who on earth will be able to?”  Response (loosely):  “Gee, I guess we never thought of that.” 
 
Duh!” would be the understatement of the year. 
 
2.  A person who’s struggled with sleep timing (and sleeping pills) for years, finally gets a diagnosis:  Delayed Sleep-Phase Syndrome.  The usual reaction:  “Hurrah!  It has a name!  It’s not just me!” 
 
And what “help” is offered?  Just the non-helpful advice:  “Try to move your bedtime a half an hour earlier every two or three days until you’re going to sleep at 11 p.m. or so.” 
 
The doctor apparently doesn’t know the basics about this disorder.  Part of its definition is that this won’t work!  So, on the authority of a doctor, the patient’s lack of will-power is to blame. 

I’d like to wring these doctors’ necks. 

My own sleep doctor is not perfect.  Knowing what I now know, I think a couple of things should have been done differently in my case.  But he believes what I tell him.  He can usually tell me about other patients with similar experiences.  And he sees patients like me one day a week between twelve noon and eight p.m.  

Do patients nos. 1 and 2 above live in an underdeveloped country?  One can wonder.  They are both in New England…. 

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Next post:  xxiv. A sleep diary

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xvi. Treatment

28 November 2005 at 23:35 | Posted in Circadian rhythm | 13 Comments
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  My light box 
 
It sounds so simple.  Take no naps.  Take melatonin at about 9 p.m.  To bed after 10.  Sleep soundly until about 7.  Turn on the light box, which stands on a shelf above the monitor, and do e-mail and stuff for almost an hour with 10000 lux entering the eyes at the slight angle from above. 
 
Keep a sleep diary showing exact sleep times (including the occasional nap).  Analyze it together with the sleep specialist every 5th week.  Hear him say “You’re doing well,” even when that seems to be more than slightly exaggerated.  
 
Never mind the occasional 36-hour trick.  Many patients never do stop staying up all night and all the next day now and then.  Seems to be a necessary adjustment, not just an old habit. 
 
Melatonin does make one sleepy.  Morning bright light does, apparently, shift the body temperature minimum earlier, so that it is not difficult to awaken at about 7. 
 
So it is that simple, when it works. 
 
The doctor does admit (reluctantly, I think) that some patients never do adjust to this regimen.  I understand that.  My body knows that it is being fooled.  Appetite (and who knows what else) has not shifted.  I’ve lost the creative, productive hours of 1-4 a.m., and they haven’t popped up anywhere else. 
 
Conclusion after a year:  it is possible, but no more.  Might it have been satisfactory, if tried at a much younger age?  I do suspect that it might have been…
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Next post:  xvii. Coffee break
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xv. Why don’t doctors know?

28 November 2005 at 16:37 | Posted in Circadian rhythm | 11 Comments
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Not many doctors know anything about circadian rhythms.  Not even those calling themselves “sleep specialists” at “sleep clinics”.  Why? 
 
Well, the history of the field doesn’t go far back.  Some observations were made in the 1700s (the plant in the dark cupboard; Linne’s flower clock), 1800s (experiments and observations, again mostly on plants) and pre-WWII (humans in dark caves; photoperiodism – short and long day plants). 
 
Research and knowledge exploded in the last half of the 1900s.  In all directions, as explosions are wont to do.  Medicine studied brain waves and sleep stages in humans.  Biology, the mechanisms of seasonal migration and daily activity.  The terms “circadian rhythms” and “biological clock” weren’t even coined until less than a half a century ago.  There’s been constant work on all levels, evolutionary to molecular to wondering why organisms need to sleep at all.  Nature and nurture on all levels. 
 
No one can keep up with the details of all this as it is happening.  And no one is steering — setting priorities — except perhaps those who provide funding for research.  Someone has to choose what is sufficiently well documented and what is important enough for medical students to study. 
 
Apnea is widespread, dramatic (it kills) and treatable.  Fine.  Students learn about apnea.  Journalists pick up on and tell people about narcolepsy with cataplexy — both the words and the effects appeal; they sell newspapers.  Pills are provided for insomnia.  Sleep medicine is thus covered — on to the next item. 
 
Circadian rhythm disorders are “new”.  Discovered, defined and accepted by the 90s or so.  Many doctors now in practice were educated earlier than that and must be forgiven. 
 
The experts ’til now have been the psychiatrists and the neurologists.  Strange bedfellows, it seems to me, but that may just reveal how little I know about those fields.  In the USA, sleep medicine has now been approved as a sub-specialty for physicians practicing psychiatry, neurology, internal medicine and pediatrics. 
 
Requirements for the one year program include Chronobiological mechanismsCircadian rhythm disorders is mentioned under Treatment strategies.  The approval came in March 2005, and institutions wishing to offer the program were invited to apply for accreditation.  So no candidates can have completed the program to date.  That’s how new the field is!

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Next post:  xvi. Treatment

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xi. My diagnosis!

27 November 2005 at 04:22 | Posted in Circadian rhythm | 7 Comments
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 (No, this isn’t my sleep specialist, but he does look like him :-))

Through a 15 year period, my present doctor had tested me for thyroid etc., sent me to a neurologist for overnight sleep analysis with all the attached equipment, sent me to a series of time-consuming and useless psychologists, had my throat operated (probably unnecessarily) for apnea and put me on a pill for depression.
 
Finally, he said he wanted to send me to a specialist to see if the depression diagnosis was correct.  The specialist he chose is a professor of psychiatry and the co-founder of a sleep clinic where he works one afternoon and evening a week.  I feared, and fully expected, a new and expensive round of psychologist-type time-wasting.
 
Dr. Holsten asked the many questions you’d expect to get from any new doctor:  health, job, living arrangements.  A great many questions, very quickly.  I should have taped the interview so I could analyze at what point it dawned on me that these aren’t questions to just any and every patient — this guy is circling me in!  He asked unexpectedly about several things which applied to me, but which I’d never connected to sleep problems.  It was rather exhilarating, like the experience some people rave about after having their fortunes told.
 
Unlike most doctors today he wasn’t staring at a computer screen, but he wasn’t looking at me either.  He was placing dots on a tiny grid about 8×10 cm.  Suddenly he looked up and said “You have DSPS!”  Of which I’d never heard.  He drew curves showing the timing of normal sleep related to body temperature, said he’d have my regular doctor put me on 100% sick leave for two months, gave me a sleep diary form to fill out every day, wrote the application and prescription for melatonin, arranged for me to borrow a light box, gave instructions (NO naps!), said it wouldn’t hurt to keep taking the depression medication and made an appointment for the first follow-up three weeks later.  I was out of there within 30 minutes with my head swimming.
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Next post:  xii. Circadian rhythm disorders
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