Is a sleep study worthwhile?

April 14, 2024 1:05 PM

Has your life been substantively improved by the results of a sleep study that diagnosed something other than sleep apnea? If so, how?

I have major ongoing fatigue subsequent to a severe burnout. My doctor has floated the possibility of referring me for a sleep study (overnight in a lab). I dread the disruption to my routine and the likely horrible night of non-sleep that would result from trying to spend a night wired up to equipment. So I want to know what potential tangible value the results of such a study could hold for me.

It takes me a long time to fall asleep (at least 30 minutes; sometimes up to 2 hours) and sometimes I'm awake again for an hour or two in the middle of the night after getting up to pee. Sometimes I'm processing thoughts and experiences during this awake time or "problem-solving" in my mind. (I do not "get up and read" during this time because my body needs the physical rest, and additional physical stimulation and light exposure will just make me stay awake longer.) I'm autistic and apparently this pattern is very common in autistic people (like 80% common). This sleep pattern is not new since the burnout, but it may be more pronounced. Prior to burnout I did not nap during the day; post-burnout I've implemented a regular nap schedule which has helped me avoid daytime exhaustion-crashes by resting preemptively.

Have you had a similar flavour of sleep issues, done a sleep study, and gotten a result that led to treatment that materially improved your daytime quality of life? If so, what was it?

posted by heatherlogan to Health & Fitness (13 answers total)

Best answer: yes.

I have sleep apnea, and currently use a CPAP, which I find does improve quality and quantity of sleep I get. but I also have REM Sleep Behavior Disorder (the main thing I was being tested for). and its so great now that I have that taken care of too!! (melatonin, in my case). I rarely have disruptive nightmares now, and when I do I am much less likely to flail about and kick my husband. I am also a recently post-menopausal person, another thing that can really wreak havoc on sleep.
posted by supermedusa at 1:16 PM on April 14 [2 favorites]

I’ll trust that you have good reasons to think this isn’t sleep apnea, so maybe this won’t apply, but when I did my sleep study, I did an at-home one and it gave enough data to diagnose me with sleep apnea. I had to use medical tape to secure a couple pieces to my face, and avoid tangling some cords, but I got to sleep in my own bed and it wasn’t uncomfortable once I got settled. Getting my cpap changed my life—I used to think when people talked about waking up refreshed, it was just a figure of speech. Getting a cpap allowed me to feel rested for the first time I can ever remember. (I wasted about 6 months on a custom mouth guard before giving in and getting the cpap, which I don’t recommend.) Maybe your doctor is looking for data that don’t show up as well with an at-home sleep study, but I’d definitely ask about it.
posted by theotherdurassister at 1:40 PM on April 14 [2 favorites]

Like theotherdurassister, I too did an at-home sleep study instead of the lab one, which simply meant I had to hook up some equipment myself and then sleep as usual at home in my own bed. So that's an option to consider or look into.

On another note, when you are processing thoughts or "problem-solving", are you feeling anxious? If so, have you ever been evaluated for anxiety or sought treatment for it?

Also, have you tried standard advice for insomnia, and has that made any difference?

Personally I turned out to have all of: mild sleep apnea (which I would not have guessed without the sleep study) and anxiety and sleep maintenance insomnia. I'm allistic but wouldn't call myself neurotypical.

My sleep now isn't perfect, but is improved with a CPAP machine + SSRI + standard insomnia advice. My sleep doc only helped with the first of those, the others I had to ask about separately. A better sleep doc than mine might be able to provide a more holistic take.

You should check out what pertains to you because it could possibly be helped with any or all of the above.
posted by splitpeasoup at 3:00 PM on April 14

this is a good youtube channel created by a sleep physician that might help

https://www.youtube.com/@thesleepcoachschool8192
posted by ygmiaa at 3:16 PM on April 14 [2 favorites]

My understanding is that the most effective treatment for delayed sleep is CBT. From what you are saying, it might really help you to have someone else give you a set of rules to follow around sleep.

I did a sleep study, can confirm that it is a very disruptive experience. I also do not have apnea, and also do have rem misbehavior. For me, getting diagnosed and treating autoimmune disease .... cured my sleep. Keep working towards solutions - good sleep is worth it.
posted by Dashy at 4:32 PM on April 14

I did a sleep study at home too, and for me it was beneficial in ruling things out, and learning it’s ‘just’ my fibromyalgia impacting my sleep, and moving on from there for treatment ideas.
posted by ellieBOA at 6:26 AM on April 15

Best answer: Like ellieBOA, I did a sleep study at home about 10 years ago that ruled out anything it was looking for (maybe just sleep apnea? I don't remember). I did bring up trouble sleeping with a different doctor about 5 years ago. I can fall asleep quickly but was up in the middle of the night for at least 2 hours at a time, every single night, and it was starting to drive me insane although the lack of sleep didn't seem to impact my ability to function. My doctor said something that struck me as obvious in hindsight -- he said "Maybe you just don't need as much sleep as you're trying to get and should go to bed later." So I stayed up for an extra half hour or so every night, and it honestly solved most of my sleep issues. I still have nights where I wake up and am awake for the 2-hour stretch, but it doesn't happen that often. Most weeknights I probably get around 6-7 hours of sleep, and I sleep more on the weekend since I don't set an alarm.

Possibly your bedtime combined with your napping is just more sleep than your body actually needs? Might be worth a shot.
posted by jabes at 8:20 AM on April 15

I am a doctor who often sends patients for sleep studies, interprets the results and prescribes treatment. I certainly have a skewed sample (patients who get no benefit from what I do probably just stop coming back), but I take care of many patients who have had an improvement in their quality of life as a result of data we learned from a sleep study.

I won't question your certainty that your symptoms aren't due to sleep apnea, but I will note that nocturia (waking up in the middle of the night to pee) can be a symptom of sleep apnea, and treating sleep apnea likewise often improves nocturia.
posted by telegraph at 3:13 PM on April 15

This is not what you asked but in case it helps: I also suffer from problem-solving insomnia when I wake up to pee — or at least I did until I found audiobooks. Now sticking something into my ear when I am half-asleep really lets me fall back to sleep without starting to think. It is a functional, drug-free intervention, so if you want to try it in the meantime, it might help you get more insight.
posted by dame at 3:39 PM on April 15

Response by poster: A few updates, since the answers seem to be wandering farther and farther away from my question:

- I am very knowledgeable about sleep hygiene and have been practicing meditation and deep relaxation for nearly three decades. I screened negative for anxiety and depression on the standard screening tests. I am already pursuing counselling for trauma.

- The problem that I am trying to solve is the fatigue. Taking a long time to fall asleep and waking up during the night don't intrinsically bother me; the only context in which I would take action to try to address them is if they are causing my fatigue. I do not see processing or problem-solving while lying in bed as a bad thing in itself, and it seems to be a thing that my brain needs to do.

- My understanding is that sleep apnea can be screened for through an at-home sleep study (and thank you to theotherdurassister and splitpeasoup for providing anecdata to support this). If I conclude that sleep apnea is the only potential sleep problem that requires diagnosis through a sleep study in order to treat, I would opt for an at-home study.

- It's sounding like the only sleep disorder that anyone who has replied so far has direct experience of diagnosing through a sleep study and successfully treating (thanks supermedusa!) is REM Sleep Behaviour Disorder, which was treated with melatonin. I've tried melatonin in varying doses and it doesn't seem to have any effect on me (other than to make me wake up too early feeling totally wasted, but west-to-east jet lag was also in the mix and the dosage was probably too high; lower dosages without travel don't seem to do anything to me).

- Dashy, your comment about me needing someone to give me rules to follow around sleep is infantilizing and ableist. Please step away from this thread and have a serious think about your attitudes toward autistic people. I would flag your comment for deletion except that it's useful to know that CBT is seen as the most effective treatment for delayed sleep -- this gives me another reason to skip the sleep study because (unlike most health-care professionals) I am aware of the studies that demonstrate that standard CBT is usually ineffective and often harmful when applied to autistic people.

- telegraph, I value your experience as a doctor; your comment seems to indicate that sleep apnea is the only disorder that you have diagnosed and treated as a result of a sleep study that has improved your patients' quality of life. If there are others, I invite you to share what they are and what the standard treatment approaches are. I am the kind of person who needs to know "what information will this test provide, how will that information affect actions taken, and what outcomes would those actions be expected to lead to" before embarking on a disruptive or invasive medical test.
posted by heatherlogan at 6:39 PM on April 15

Best answer: Thanks for asking this; I've been wondering the same myself. I got an in-home sleep study for apnea which turned up nothing so my doctor wanted me to go in for a lab one, and I would rather not if it won't help.

I asked this on Reddit a while back and got:

"A sleep study can also diagnose narcolepsy or restless leg syndrome which can affect sleep and restfulness. There are specific treatments for both."

"It diagnosed my idiopathic hypersomnia."

A couple of friends' doctors, when their sleep study did not show apnea, kinda shrugged and said "I guess you're depressed." How helpful!

Restless leg syndrome is not an issue for me (and I take gabapentin to improve my sleep anyway, and that's a treatment for it) and narcolepsy/ hypersomnia are pretty clearly not my issue, so I'm left thinking a sleep study will not be useful for me.

One thing you might consider trying is sleep restriction- temporarily reducing the amount of time you spend in bed to help you learn to sleep longer periods. You can look up protocols online. It didn't work for me but it's probably one of the first things a sleep specialist would have you try, so you can get it over with now.

You also might consider trying something like modafinil for fatigue, and/or various sleep meds. The typical ones don't help my early rising but gabapentin does more than any others. And if you would sleep through the night if you didn't get up to pee, you might want to try some things to reduce that drive.

Good luck!
posted by metasarah at 7:04 AM on April 16

I have had two sleep tests, 3 months apart in my early 20s. In my case, I have severe insomnia (falling asleep, staying asleep), and combined with a stressful job, I found the fatigue building to intolerable levels. I found the studies really validated that i genuinely wasn’t sleeping more than 3-4hrs a night, and that yes my brain really didn’t turn off or hit deep sleep. In my case, after standard recommendations and medications (ambien at the time) didn’t work, and I was waking up even with good sleep hygiene, regular (probably too much)exercise, healthy diet and sleep meds etc, my doctor wanted me to do a sleep study to rule out other disorders, and check how I was reacting to meds and to see if they could better fine tune our strategy. In my case, we changed up some meds after the sleep trial, and then after 3 months did a second one to see if things had changed enough for me to start weening off the medicines I was on.

I did a basically really intense set of sleeping pills to try to get my body to catch up on sleep, then tapered off of them to a maintenance dose, and now a decade later I have a supply of ambien for when I need it, and occasionally do a week course if I need it, but also genuinely get by on less sleep than most people. My life is materially better when I’m rested, and it helps me to know more about how I function. I did not have sleep apnea, narcolepsy or major REM disorders, which to me was a relief.

Disclaimer, I got lucky with my brain, and I’m neurotypical, and not prone to anxiety or depression so my experience with the medical profession is different from yours. I’ve had therapy of various flavors (CBT, talk) over the years and been fine with that as well. Melatonin and herbal remedies do fuck all for me, while Benadryl does help (although that has its own concerns that I have risk accepted).
posted by larthegreat at 5:43 PM on April 19

Response by poster: Thanks for all the comments. I've marked a few as "best answer" that were particularly helpful. These have encouraged me to do some careful self-observation of my physical sensations when I'm in bed but not asleep, which I think has turned up a contributing issue that could be addressed before resorting to a sleep study. I'm going to collect another week or so of data and then probably talk to my doctor again.
posted by heatherlogan at 8:24 AM on April 24