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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xxii. How to tackle DSPS

18 December 2005 at 12:48 | Posted in Circadian rhythm | 6 Comments
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Having a circadian rhythm disorder and not knowing what it is, is essentially different from having one and knowing something about it.  Though no two of us are alike, anyone with a disorder related to mine who has read this far, now knows something about it.  
 
Someone wrote on a message board recently:  “Wow – reading these posts is totally shocking.  It seems like I have written them all myself!  I have gone through so much of what is described here.” 
 
Adding such descriptions here, blog entries about my past troubles and struggles, already half-written in my head, is unnecessary, I think. 
 
Finally — way out in the middle of Chapter Two — it’s occurred to me that I should define who I’m writing for. 
 
You are probably over 20.  You have one heck of a time getting up in the a.m. no matter how many alarm clocks you are using (and likely not even hearing).  You are at your most alert, creative, productive and alive in the middle of the night, and you’ve been like this for years.  You’ve tried “getting to bed at a decent hour”, but for you that doesn’t mean getting to sleep right away.  However, when timed right for you, your sleep is usually good and uninterrupted for 7-9 hours.  When you do get enough sleep, timed right, you’re not unreasonably tired the rest of the day.  You suspect that you may have a circadian rhythm disorder. 
 
You may also be one of the approximately 50% of us who’ve been diagnosed with depression or anxiety.  Not all the experts agree with me ( yet Image ), but it looks like the trend is to accept that the root of the problem is the physical / chemical / genetic circadian rhythm disorder.  The mood problems follow, quite logically, because of societal expectations and pressures, often compounded by sleep deprivation. 
 
You may have gotten onto the sleeping pill merry-go-round, resulting in habituation, withdrawal, rebound etc.  (Thanking my lucky stars — I’ve never gone to a doctor who talked me into that!) 
 
You may have developed all manner of coping strategies, for example sleeping in two shifts every day. 
 
So what do you do now?  
 
You live with it, or you go for diagnosis and maybe treatment.  I want to talk a bit about these options, but first:  The Sleep Log.

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Next post:  xxiii. We interrupt this program…

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xiv. THAT’s what friends are!

28 November 2005 at 14:32 | Posted in Circadian rhythm | 1 Comment
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Kopi av rose
 
 
  
  Ei rose til deg,
Du veit kven du er.

 

When you often cannot get up on time, you are seen as unreliable, irresponsible, careless, selfish and worse.  As long as neither you nor anyone else knows that there may be a real reason for this behavior, it is all too easy to believe that you are, in fact, all those things.  And it doesn’t get better as youthful resilience fades.  Been there, done that.

How, then, can some friends offer help and support through it all, year after year?  Real help, as in ‘phone calls at 7, daily for months.  Organized help, with meetings, even.  Are these friends naive, even foolish?  Are they just being “nice”?  Can you trust their judgement, when they are willing to support a seemingly lost cause?

My friends were delighted, as I was, when a diagnosis was defined.  They were justified, could relax and leave the nitty-gritty to the sleep specialist who’d finally popped up.

I haven’t really figured it out yet, after these months of studying DSPS and pondering on how my friends could, somehow, have known.  My good news, a recognized disability, was almost overwhelming to me.  But they’d “known” all along.  I am so grateful.

THANK YOU!
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Next post:  xv. Why don’t doctors know?
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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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