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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5 Comments »

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  1. I can’t believe it myself! I read a book called Good Nights last week and was unable to sleep tonight (imagine that!) so I was researching circadian rhythms a little more…..lo and behold I think I have a winner! DSPS is me to a ‘T’! It is incredible to find out that there are others who are also humiliated daily by showing up for things late! Now, how do I fix it?????

  2. Thanks for commenting. You’ve taken the first step: it’s not just you, it has a name. Stand tall and keep on learning about it. Good luck.

  3. this new revelation doesn’t make me feel much better. Sometimes I force myself to stay up all night so that my children are not late to school…and I have a regular day job as well. I don’t do this often. But when the fear is there I do. It was ok when my kids didnt have to be to school til 8:30. But now its 730 and once a week I have to show up to our work meeting at 7am….darn near impossible no matter how hard i try. Got into the insurance industry so that I could work my own hours and unfortunately it just doesnt work like that….i get extremely depressed over being the way that I am but I am a single parent and there are not enough hours in the day to accomplish everything I need to. And I do not have the money to go to a sleep specialist.

  4. My specialist ‘believes’ that all night thing, has seen it before – but doesn’t really ‘get’ it. Normal people never will. In your situation, you (and your kids) knowing that there is a real diagnosis, even if not on paper, should hopefully help with the self-esteem and counter the depression. That’s not the practical help you need, but the mental side of it is important, too. Good luck.

  5. I wonder if anyone can please suggest a sleep doctor who can diagnose what I am sure is my DSPS. I have had compatible work shifts most of my life for various reasons and never realized that I could not get along otherwise until I was forced into the exact opposite shift (4am to Noon) for almost two years. It really killed me. Now, after two years back in a compatible afternoon/evening shift, my boss is demanding again that I move to that shift that starts in the middle of the night – at the exact time that my body always wants to fall asleep. I sleep great if workng 4pm to midnight and hardly at all if 4am to Noon. Do any of you know of a good doctor or clinic near New York City that has experience with DSPS and that knows it when they see it without struggling more than necessary to find some other problem that I never had? Without a prompt diagnosis I will be labeled crazy or lazy (and soon, unemployed!) I can’t get online to the blog often but I can get email at k123 (at) computermail.net (address is disguised from spambots – just replace “at” with “@” of course.

    Thanks!
    Kevin


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