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Monday, April 10, 2006

Dr. No

Is there anything more annoying than a doctor who won't listen to you?

As the name of this blog tells you, I have major sleep issues. (Yes, I'm about to get all Andy Sullivan on you.) I'm generally up until between 5 and 8am, and whatever sleep I do get is lousy - I wake up constantly, and by the time I get out of bed I feel like I've been hit by a truck. I'm exhausted all day, but inevitably around 10 or 11pm I start to feel awake and alert.

Over the past six months I've been seeing various doctors in an attempt to deal with I consider to be two separate issues (dyssomnias, as they're called): the first is the poor quality of my actual sleep, the second my inability to sleep at night.

Through a polysomnogram conducted during an overnight stay in a sleep lab, the sleep quality issue has been diagnosed as obstructive sleep apnea (OSA), which, briefly, means that while I'm sleeping my airway closes up and I stop breathing for a brief period of time. This happens constantly throughout my sleep, causing me to briefly wake up over and over again, which is why I never feel rested or refreshed. I'm trying to solve this problem with the use of a CPAP machine, which pumps pressurized air through my nose to keep the airway open. It's a little machine that connects, via a hose, to a mask which goes over my nose, and which I'm trying to retail as "sexy in a Blue Velvet kind of way." (Not much luck so far.) It hasn't really been helpful so far, but I'm gonna keep trying.

So today I saw my sleep doctor (a pulmonologist) to talk about my being unable to fall asleep. I'm convinced that I have delayed sleep phase syndrome (DSPS), which not surprisingly means that my body clock is out of whack so that I'm tired during the day and awake at night. But, and here's where my frustration kicks in, I can't get my doctor to really listen to me.

When I had my overnight stays at the sleep lab (once for the polysomnogram, once to fit me for the CPAP) I fell asleep at around 11pm, slept for about an hour or so, and then was up for the rest of the night. So according to the doctor, the fact that I briefly fell asleep at around 11 shows that I don't have DSPS. I tried to explain to him that this happens occasionally, and that it's the equivalent of a mid-day nap for a normal person. This didn't impress him.

He told me I should try sleep medications. (Gee, I never thought of that. Brilliant.) I informed him that I've tried every sleep aid known to man, from ambien to lunesta to trazodone to restoril to medications that haven't been used in twenty years. Not one of them puts me to sleep. His answer to this was, "well, you haven't tried them with the CPAP." Now, just so we're clear here, the purpose of the CPAP is not to put you to sleep, it's to keep you asleep. It has nothing whatsoever to do with DSPS or any other dyssomnia that prevents you from falling asleep. And, on top of that, it's not even doing what it's supposed to do for me.

I'm not generally shy about expressing my opinion, but my attitude is that you shouldn't piss off the people who control your physical and mental well being. So as much as I wanted to, at no point did I leap out of my chair and strangle the doc.

The upshot of all this? I'm going to try the remedy for DSPS, which is to force your body clock to "reset" by pushing forward the time you go to sleep until you're where you want to be. In otherwords, if I usually fall asleep around 6am, I'll push it to 7am for a couple of days, then 8am, etc, until I'm pusing it to midnight or 1am. This'll take about a month, and is supposedly not much fun, but it's either that or completely give up on any semblance of a normal life, which I'm not quite ready to do.

I'll keep you up-to-date through a series of really short blog posts, but I promise not to turn this into a "here's what's wrong with me" diary. In otherwords, enough about me: what do you think about me?

I now return you to your regularly scheduled blog programming.

Blogger Adam said...

I do not have the apnea, but I also wake up exhausted every single time, and have no explanation for why. However I was diagnosed with Sleep Phase Delay Disorder when I was 20. I was actually going for Attention Deficit Testing when I was informed about this. I thought I was just a vampire, or flat out irresponsible. It has affected me emotionally that's for sure. For all those who say ADD is fake, you should be gathered into a small community and kept from reproducing! But I digress.

Many people with ADD have sleeping disorders. and of those people, 10% have sleep phase delay issues. This is because BOTH have to do with Seratonin imbalances, along with melatonin problems. I share the same symptoms as you. Symptoms that were observed by my testing which involved 8 weeks of testing which was largely behavioral documentation since childhood. I have ALWAYS experience an inverted sleep cycle since age 10, regardless of medication, alarms, dietary changes, exercise schedules, alarm clock settings, reward systems for waking up, or even earlier bed times! Your doctor is wrong, not because he doubts you, but because let's face it, informing a doctor of ones self diagnosis is kind of insulting to their job. At least thats what I have found. Since I was informed of what I have I encounter resistance from the "professionals" whenever I explain all that I have researched.

I do have some bad news for you though. In the DSM-IV Sleep disorders of the delayed sleep phase type, do not have ANY possible treatments, as it is still a mystery EXCEPT for the fact they know it's tied to Melatonin problems.

You have however touched on the one solution it does mention, over the period of a week shifting your sleep schedule forward incrementally. the problem with this solution is since the only things that helps this problem is VERY CONSISTENT routine, if one day you deviate from the routine, you'll find yourself having to start over!

My advise is based on dealing with this problem for 20 years or so, only knowing what it is called for the last 7 years. Routine. Get up the same time, drink coffee and "wake up" in your own way, work, exercise, and "go to sleep" in your own way, read a book, or something. Even if the actions I listed in quotes doesn't happen, and it won't always. you have to do them at the same times. Also diet. Take vitamins and lay of soda and sugar and caffeine late in the day. It should be noted that with my ADD, (which by the way is not the type with hyperactivity, that's ADHD) I rarely am able to follow what I am even explaining to you, as I end up playing my guitars or other distractions I am wrought with.

There is no answer, trust me everyone I meet says "I don't believe you, your just irresponsible" well thats like saying someone with cancer should just get better and not be sick. It is that Impossible to overcome! Until one either experiences it or knows somebody with the problem, thats what you always will encounter!

The other problem with Sleep phase delay is everyone and their brother will self diagnose themselves. This even furthers the credibility of the disorder because EVERYBODY has a circadian rhythm that is out of whack at some point. EVERY single Adolescent experiences a delayed rhythm, and older people later in life do as well. thats because as we grow, our bodies require more sleep at younger ages. think about it. Parents complaining their children "sleep the day away". Also later in life the body tends to take on sleep schedules from 10pm to 4am. this is common! Circadian Rhythm Sleep Phase Delay Disorder is specific to be COMPLETELY INVERTED sleep schedules, almost exactly like temporary jet lag. Sadly it's not temporary.

So keep in mind doctors hear a massive amount of people complaining of sleep problems that combine these natural out of sync rhythms compounded by terrible lifestyle characteristics like stress and diet. So Sleep Phase Delay symptoms only sound to much like these other common afflictions, yet its set far from being the same. thats why going to the doctor with a BIG story will get you nowhere. I suggest printing case stories, and taking in books with shared experiences highlighted. That way the doctor thinks it is still up to him to take your research, and then validate it. Instead of just agreeing to give drugs to someone who tells him they need it. show you have done a lot of the leg work. who knows, If your lucky (and trust me you would be) you'll find out it's not sleep Phase Delay Disorder, it's something else that is similar, yet manageable.
There are far to many variables that affect sleep to just go with an initial answer to ones affected sleep patterns. it takes extensive documentation. On a personal level my mother wrote a letter to my doctor during all this speaking about when I was in the womb, my patterns of waking. Then all through my elementary school years, and how it worsened through middle school on into high school. There is a lot to actual diagnose this thing! And guess what? Like you I have had regular schedules. I to fall asleep at 11pm sometimes. This means Absolutely nothing. Personally I go through phases. Out of any givin' month, I will obtain normal periods of sleep about 4 days a month! And that usually happens because, to function in society I usually just go without sleep to meet my schedules, so I've exhausted my body and mind that I do sleep at those times. What has helped me a little is Adderall. Not Adderall XR which is a time released adderall that stays in your system way to long, and has kept me from sleeping for several days straight!!! Adderall is the best stuff in the world for me! I take a small amount in the morning, mainly for my ADD. However what this does is snaps me out of the lethargy I feel all day, my mind and body are productive all day long, so much so that by night time, I still could stay up because as soon as the sun goes down I wake up, however I can get to sleep because I have been "going" all day so to speak. It should be said that it still takes a tremendous effort. It should also be noted that I am by no means suggest the use of Adderall, as it is an amphetamine that needs to be monitored because of it's properties. in the wrong hands as terrible as it sounds can, and does cause sudden death! However if you think it could work for you. do the research, take documents to your doctor, and highlight cases to discuss only. Because based on experience as soon as the word Adderall leaves your mouth in the presence of a doctor you will be treated like a drug addict! This is with good reason, but it's hurtful especially when it could very well help a very real misery in your life!

It's a problem I would not wish on my worst enemy, it makes you feel like you can't even function like a normal person, and there is absolutely no understanding from anyone. Find yourself a lifestyle that suits you. 3rd shift work etc.

Good luck...but don't stop searching. Right now I am researching 2 possible aids. sam-e, and 5-HTP. Both are being evaluated with helping to regulate levels of seratonin. Also, you might try hitting a tanning bed every so often in the morning before work. It sounds funny, but doctors often prescribe this very thing for seasonal affect disorder, and since our sleep phase problems stems from sunlight essentially, this would theoretically signal the body, and give it further cues on time of day and hopefully set the body's rythems. Cross your fingers!


P.S. Anyone interested in discussing this hit me up at, I can't ever discuss enough Ideas on how to live with this! I could go on and on for days writing about what I've encountered!


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