xxiii. We interrupt this program…

21 December 2005 at 13:07 | Posted in Circadian rhythm | 12 Comments
Tags: , ,
 
 
…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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  1. My shrink told me today to try again to stay awake until a “normal” hour, then take my meds. He admitted he;s never treated someone like me before, and I have the worst sleep disorder he’s ever seen. It’s a MAJOR problem, he said. No, really??? Next stop, he said, in 5 weeks, will be a sleep clinic at RI hospital in Providence. Only 20 min. away from me, but will they accept my insurance? And will my appt. be in the am?! 😦

  2. Example #2 is clearly someone that needs to do some more reading. But example #1 didn’t shock me much. Perhaps it says something about how pervasive society’s bias is that I have simply gotten used to the fact that 8 am is “working hours” for most people and I just have to get used to it. If I have a 10:30 appointment, I’ll go to sleep at 5, wake up at 9, then take a nap that afternoon to get the rest of my sleep. I can’t do this on a regular basis, but I can do it once a week, like to get my daughter off to school if my wife has to go to work.

    If I have an 8:30 appointment, I’ll just pull an all-nighter. It will mess up my day but it never occurred to me that I should be demanding a different appointment time.

    I guess the next time someone wants to set up a meeting, I’ll just propose 2:30 am, and we’ll see how it fits in their schedule. 🙂

  3. Yes! The time has come for DSPSers and also less extreme night owls to fight against the tyranny of the larks, as The B-Society in Denmark puts it. It’s our turn now, our mini-civil-rights movement.

  4. Lol! I laughed so hard when I got a polysomnography and was scheduled to return the device 8am the next morning. Aparently they only wanted to record the first 2 hours of my sleep. In their defence I had only told them 4 times about my suspisions of DSPS…

  5. Hope you talked them out of that. Or showed up with it at 7:30 p.m.: “Oh, didn’t you say by eight in the evening?” — all wide-eyed innocence. Thanks for commenting here.

  6. My sleep study horror story: the sleep lab technicians had never even heard of circadian rhythm disorders of any sort, and insisted on putting me to bed and getting me up at the time of their choosing (I think about four or five hours after I’d fallen asleep). I have severe ME/CFIDS, I can’t function when sleep-deprived and need to spend a lot of time in bed even when I’m getting enough sleep, so refusing to let me rest in bed (awake) during the day was no joke. Matters were aggravated when I got very little food. After all, I’d only told them that I’m vegan in writing when booking the original appointment, when it was imminent, and once I was there, so it’s not their fault that all they could feed me was a small roll and an apple (everything else they brought was non-vegan). I ended up collapsing onto the floor. They eventually noticed and I think someone pushed me onto my feet again, but they did not call a doctor as they should have, and as far as I am aware, it did not go onto my medical notes. I’d managed to make it into the sleep lab with just my walking stick, which caused no end of problems when I needed to be taken out again in one of the hospital wheelchairs, as they didn’t believe that I really needed it. A few months later I got a letter in the post saying that I just had insomnia because I hadn’t fallen asleep till 1 (which for me was miraculously early back then), mentioning in passing that I didn’t get much deep sleep but not showing any interest in it, and saying firmly that I would not be offered a return appointment. I’d waited a year (this is the NHS) and had turned up with a year’s worth of beautifully-kept sleep diaries, all showing N24 until I started the light therapy and DSPS after that.

  7. I diagnosed myself with DSPS when I found your blog and some other helpful websites a few years ago–it’s been great to know that I’m not “lazy,” and that there’s a legitimate reason I can’t go to sleep/wake up earlier on command. I’m in grad school now, so my schedule is varied and flexible enough that I can make things work, but I’m hoping to get an official diagnosis and some treatment/therapy recommendations before I re-enter the “real” world of 9-5 work. I have an appointment scheduled with a sleep specialist in the Boston area for early April–I just hope he’s not one of the New England doctors you mentioned in this post!

  8. Thanks for commenting! There are some good ones out there. About all you can do beforehand is 1) ask if the doctor has experience with circadian rhythm disorders and 2) cross your fingers. There’s a short list of doctors we’ve had good experiences with at http://niteowl.wikispaces.com/ . “We” being members of niteowl mail list which you’re welcome to join; see http://circadiandisorders.org/

    Good luck!

  9. UGH!!! #1 is typical. The doctor that diagnosed me last week, who is a sleep specialist, only has morning appointments available!!! Can you believe that? I mentioned the irony to her and she said almost exactly what you wrote, “Huh… I guess I never thought of that.” Really????

    And she has me doing this crazy sleep hygiene routine. It will be one week tomorrow since I started and since I was finally diagnosed at the age of 42. I have received two letters from her since last week to email and keep in touch with her on my progress. Perhaps she’s testing me? I don’t know. I’m in an HMO in Oakland, CA called Kaiser. They seem to be less clueless than some doctors I’ve read about but it seems like some education may be needed.

  10. Education, yes. The researchers have known about circadian rhythm disorders since the early 80s. How long should it have to take for the knowledge to “trickle down” to the medical people?

  11. This is troubling. I had a similar experience with my ‘sleep doctor.’ I thought they were a pretty decent group – they diagnosed me with sleep apnea (correctly, and it has helped with my fogginess and made it a little easier to wake up). The problem is, after I tried it for a YEAR, I went back and told the dr that I was still very tired when I woke up, no matter what I did, and I never felt rested or refreshed. She literally just shrugged her shoulders and told me I needed to get more sleep – her solution: go to bed earlier. I asked her if there was anything else I could do or try other than obvious things, and she literally said no – and this is a sleep clinic and a sleep doctor – not just a general practitioner. I really feel for everyone who’s struggling, and I agree that it’s absurd that doctors refuse to accept and treat these proven conditions.

    OK rant over.

    Good luck everyone!

  12. Thanks so much for the rant, Randy. Hope you can find a dr who can guarantee that s/he has treated circadian rhythm disorders before. And good luck to you, too!


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