Trying to figure out what I have

[gsilver]

When I was 20, I was sleeping about 12 hours a day (11 constant + 1 hour nap), and was extremely fatigued. I had mono for about 6 years in a row when I was a teen, leaving me practically bedridden for months at a time (one year, an entire month in the hospital). I was very tired most of the time when growing up. This may have an impact on my current problems.

The biggest issue (beyond little and poor sleep) is the headache that started about 2 years ago with my first post-college job, in which I was expected to work at my desk for 8-10 hours a day with minimal breaks, and no naps.

I've always slept poorly, but the current problems began a year and a half ago, with my second post-college job, when I moved to a very expensive area, where I was unable to find/afford quiet housing, and had my sleep disturbed by loud noise every night for about a year. Like the first, I was allowed minimal breaks and no naps.

Noise (and work) is no longer an issue. I've been unemployed for close to 7 months, and have been living in a quiet place for the last 3. I'm going to be in trouble soon, though, if things don't improve and unemployment runs out.


Here are some thing about my current sleeping problems:

Fall asleep quickly at night (usually half an hour or less)

Usually wake up within 2-4 hours

Often unable to fall back to sleep until hours later (usually around 7:00AM... when I want to be up). The "Second sleep" is largely unavoidable and anywhere from 3 and a half hours to only a few minutes. Usually one or less, leading to an average sleep time of just over 4 hours.

Uncontrollably falling asleep during the day (within a 2 week span, I had fallen asleep at all hours of the day) Nap attacks are almost always only a few minutes in duration.

Prior to the current sleep problems (started 1.5 years ago), I had been remembering my dreams nearly every night (this started 2.5 years ago).

Blast of pain, mostly in the chest, as soon as I try to get up after waking. Not always, but usually in the morning, and after some naps (even short ones, like falling asleep for a few minutes in front of the TV). For some time last year, this was wave after wave of pain through my entire body. Now it's just a couple of seconds, and mostly in the chest area.


And some constant symptoms:

Headache. All the time. For two years. The headache is the thing making it most difficult to fall back asleep, since it's hard to relax when my head hurts badly. It tends to get much worse if I fight a sleep attack (especially if I fall asleep, wake back up, and keep trying to work).

Mental impairment - Forgetting things, having difficulties with conversations, inability to do math (I graduated with honors in a math major in undergrad, and finished a Masters in CS 1.5 years ago, just before I moved to the place where the big problems began)

Lack of energy

Depression - Almost entirely about my sleep problems. I'm seeing a counselor, and just about all I can talk about is my sleep problems.


On the rare 8-hour sleep days (which I seem to only get if I take sleeping pills (most recently, a supplement with Tryptophan, Melatonin, Valerian, and a few other things), I am occasionally functional. (ie. last week, with the aid of the pills, I slept OK for 4 days. I was functional one of those) Compared with none of the days when I sleep poorly.

It isn't pure insomnia, since I'm falling asleep a lot during the day.
I don't think it's fibromyalgia, since I don't have any "pressure points" that seem to be the largest part of that disorder (though the chest pain is still unnerving)

[phoebe368]

From your symptons it sounds like you may have a sleep breathing disorder such as obstructive sleep apnea or upper airway resistance syndrome. I had similar problems as yours and underwent a sleep study or polysomnography which diagnosed me as having upper airway resistance syndrome which was the cause of my nocturnal awakenings, maintenance insomnia, fatigue, anxiety and depression. I used to have vivid dreams too because with upper airway resistance syndrome you are constantly be aroused in REM so you remember your dreams. Your primary care physican can schedule the sleep study for you - it will tell you how well you are sleeping etc. I also recommend the book "Sleep, Interrupted" by Dr. Steven Park. He also has his own website where you can ask him sleep related questions - do a google search because if I insert the link the monitor will delete it.

[gsilver]

I talked to my PCP about the results of a recent sleep study.

It's starting to look far more like a neurological problem than a sleep problem.

According to the clinic, during the night, I was asleep for 8.5 hours, and was lying in bed for 10.2 hours (they didn't tell me when it was morning, and I had no way of knowing the time). However, I perceived myself as being awake for a majority of the time. One time during the night, after I had perceived myself as being awake for at least an hour, I sat up. They asked me over the intercom why I had gotten up, and said that I had been awake for only a few minutes.

The study also showed that I fell asleep less than 3 minutes into the study, yet from my perspective, it was well over an hour. It was, however, an hour between when I 'fell asleep' and started REM.

Maybe I just perceive myself as being awake when in non-REM?

They did find mild sleep apnea, about 20 events over the course of the entire night, with most occurring as I woke up during the night, as opposed to interrupting deeper sleep. This alone really can't account for the severity of the impact at night or during the day.

They also diagnosed moderate to severe daytime sleepiness, without narcolepsy, as no REM was reported in the MSLT.


If anything, I'm even more baffled by it than before.

I'll have to find a new PCP, too, since she got all pissed when the doctor at the sleep clinic insinuated that she hadn't done anything to address the headaches, when that was the main thing I was talking to her about. She also claimed that I never told her about the constant headache, when that was one of the main things I complained about (she focused entirely on the migraine-like parts of it).

*sigh*

[monsterpainter]

Hi gsilver. This might be a long shot but........it rang a bell for me when you said constant headache, depression, mental impairment, fatigue and "nap attacks". These are exactly the symptoms I have (including the horrible, constant headache) if I sleep more than 6 hours in 24. I call it "the fog" and I don't know how to describe how horrible it feels. Read my posts in this section under "extreme fear of sleep". I'm on this site primarily to find others who are phobic about sleep.....but I also have sleep induced depression. I don't know if there is any connection between the two. If you have already tried sleep reduction therapy, than you can disregard this whole post.

If you've never heard of this, you probably think I'm a lunatic. You know, in your heart, that you need more and better sleep, not less. But bear with me. I'll list some reports from the Journal of the American Medical Association and the American Journal of Psychiatry so that you can fact check. Also if you do an advanced google search (type "sleep reduction" then after "one or more of these words" type "depression") you'll find a bunch of references and book excerpts. I actually figured out years ago, before I found scientific confirmation, that I had to limit my sleep to be functional. My sleep limit is 6 hours. I normally sleep 4 or 5 hours. I often sleep less or not at all, with no ill effects. I don't have to get all my sleep time at once. I break my sleep up, again with no ill effects (I've trained my dogs to wake me). If it turns out that this is, in fact, what you have, consider yourself blessed. It means you have a low sleep requirement. A lot of people with a low sleep requirement think that they are insomniacs when they're not. People with insomnia are tired. Once you get yourself on a restricted sleep schedule, you'll not only feel like a million bucks and have tons of energy.... you'll also have lots of time on your hands. I have my own business and a part time job and lots of time to read, exercise, clean house, pursue hobbies, write long posts on this message board to someone I don't know....ha ha. You'll also be annoyingly cheerful...so be aware of that.

So that you don't think I'm a total lunatic, here are the references:

"Is sleep deprivation useful in the treatment of depression?" E. Leibenluft; American Journal of Psychiatry 149:159 1992

"Effect of sleep deprivation on brain metabolism of depressed patients" J. Wu; American Journal of Psychiatry 149:538 1992

"the biological basis of an antidepressant response to sleep deprivation and relapse: review and hypothesis" J. Wu; American Journal of Psychiatry 147:14 1990

"improvement of depression and triggering of mania by sleep deprivation" Journal of the American Medical Association 267:548, 1992

A few books that mention these studies....Sleep Less, Live More, The Sleep Management Plan and the McDougall Program for Maximum Weight Loss

I really do hope this is helpful.

[gsilver]

I was kind of forced to have limited sleep last year due to the hours forced upon me by my job, and things were certainly worse then than they are now.


Anyway, I talked to the sleep clinic, and they say that as far as they can tell, there isn't anything physically wrong (that they could tell) that's preventing me from sleeping. The three biggest culprits are the sleeping environment, the (mild) sleep apnea, and the headaches.


Other than getting a longer bed and leaving the swamp cooler on 24x7, there's not much I can do about the sleep environment, but leaving it on overnight (dropping the temperature from an average of 77 degrees at night to 70) does make a pretty huge difference. The bed will have to wait until I get a job, though, since I have no money, and soon will have no room.

I'm very sensitive to noise though, including the sound of my heartbeat reflected by earplugs.


Since I had trouble with a CPAP the last time I tried it (2nd and 5th sleep studies suggest sleep apnea, 1st, 3rd, and 4th did not), the doctor suggested an oral appliance. Surgery is also an option, but a last resort; I'm not at that point, yet.

Also, there's the weight issue. I'm just below 200 right now, which isn't too bad, but before last year (with an all-consuming job; also, when my sleep went to hell) I was at 165. The last time when I was over 200 was also the last time my sleep was terrible. Exercise is damn hard on days that I don't sleep well. It's also difficult to get myself to go outside as long as I live in the city... I HATE the endless concrete. I grew up in a small town, and don't think that I'll ever get used to the city.

I'm moving to a smaller, more tolerable town in two weeks; the bad thing is that it's the parent's place because unemployment has run out, and I've been unable to get a job.

As for the headaches, I'll need to get into a neurologist. I have medicaid, which will cover it, but simply getting an appointment is difficult.