I don't know what's wrong with me and neither do the doctors

[Beour]

Note: I've been advised on r/CPAP to register and post my problem and sleep study results here.

TL;DR: AHI of 5 that doctors don’t think is worth treating. Spontaneous arousals of 7.5 an hour but not UARS according to doctors. I’ve no clue what’s wrong with me except doctors suggest it’s psychological. I’m beyond frustrated and depressed. Got a CPAP machine anyway but need to get a better fitting mask.

I feel like my life is ruined. I’ve always been a poor sleeper but in the past 2-3 years it’s gotten much worse. I struggled with energy problems with my job but most of the time I could go auto-pilot mode and that got me through the day before crashing at home. I started the very slow process of asking for a sleep study in May 2016. In September I started University as a mature student but my symptoms got worse and trying to retain info and think critically was unbelievably stressful that I had to drop one class under the advise of a study adviser. In November I had 1 overnight sleep study and got my results in December. I got more and more sick that by the end of January I was asked to suspend my studies because the advisers were worried I would suffer a burnout.

My results http://imgur.com/a/NIuX0 (I can translate the doctor's notes if needed) weren’t very clear from the several appointments I had and the language barrier didn’t help (I’m an English speaking native living in the Netherlands) so my partner insisted on coming to every single appointment so he could translate better. I was told I have a mild form of sleep apnea (AHI 5) but the doctors don’t think it’s worth treating and they think the main issue is that I have these “spontaneous arousals” of 7.5 per hour. I came across UARS and asked the Neurologist about it but she said that it was already checked for in the study and that I don’t have that either.

It was suggested that the spontaneous arousals were psychological, but I have a hard time really believing that because I’m more mentally sound than I was 5 or 10 years ago, so why would I suddenly sleep like crap now? My partner thinks I might be suffering from some sort of emotional burnout because of childhood and adult traumas I’ve had. I suffer from depression but I have a much better handle on it than I did in the past thanks to some therapy and self-help. In my opinion, claiming the spontaneous arousals were purely psychological felt like a cop out.

I’ve always struggled with my weight (Having PCOS doesn’t help) and since my symptoms got worse, my metabolism pretty much died and I piled on more weight. I’ve been to an obesity clinic and physiotherapists to try to control this. Trying to exercise is hard when I never have energy and I am always sore or in pain somehow. I started swimming lessons and swimming by myself(less impact on my muscles and joints) and dieting by using apps to track my calorie intake. I recently started doing the Keto diet and managed to break my plateau and am very very slowly losing weight. I'm also trying to convince my GP to refer me to a different Nose, Throat & Ear Doctor because I was very dissatisfied with how I was treated by the first one.

Via Reddit I was convinced to try obtaining a CPAP machine despite what doctors think. I got a Resmed Airsense 10 Autoset and a Philips Resperonics Amara full-face mask in size S but it turns out I need a Petite size (finding one turns out ot be quite the task). The S size kept leaking in the 3 nights that I used it and it kept waking me up.

So here I am too sick to study or work and I feel like I'm withering away.

A massive thank you in advance to anyone who reads this.

[Julie]

Hi, glad you wrote and hope we can help.

First question is - do you generally sleep on your back? That will provoke more apneas, and if you could side sleep instead it could make all the difference... many wear a stuffed backpack or use pillows etc. to keep from flipping overnight at least until it becomes a habit (side sleeping) and even your result of 5/hr would improve. As far as the weight goes, even a little can (frustratingly) make a big difference and the fact you're losing now - and slowly is the best way = should also help, probably more than anything else. It's now thought that apnea can put on the weight, rather than vice versa, so don't feel guilty about gaining, but do do whatever you can to get rid of it... and then keep it off.

We will always be here for questions, and stay with this thread so we can keep track. Let us know how things go... I believe you will make it work!

[Beour]

First question is - do you generally sleep on your back?

I always fall asleep on my side but I do roll over on my back (my partner can attest to this). I tried pinning a tennis ball to the back of my top for 2 weeks to prevent myself from rolling on my back. Although it did prevent me from rolling on my back there were 2 problems: 1. I still woke up the same sick, weak and tired self every morning and 2. the tennis balls would eventually cause back and hip pain because I can't lie on one part of my body for too long while sleeping, and whenever I wanted to flip to the other side, I would wake up completely because I had to do just that: flip over because the tennis ball was annoying as hell. I guess I could try another method of preventing myself from rolling on my back but I am never doing the tennis ball thing again. It was so painful, even during the day.

We will always be here for questions, and stay with this thread so we can keep track. Let us know how things go... I believe you will make it work!

Thanks so much

[herefishy]

Sometimes a soft cervical collar helps with leaks, you can buy them at the drugstore.

[robysue]

Beour,

I don't mean to sound skeptical, but with an AHI = 5 and UARS ruled out, you may be expecting CPAP to do too much to fix your bad sleep.

I'm not saying that your apnea problem is not worth treating: Since you are symptomatic, trying CPAP is worth doing. But it sounds to me like there may be more than one cause for your bad sleep, and the only thing CPAP fixes is bad sleep caused by apnea/UARS.

What do your sleep habits and patterns look like?

Finally, you might want to pick up the book Sound Sleep, Sound Mind by Dr. Barry Krakow. The book is in two parts. The first part is essentially a book on insomnia with a lot of self-help tips. The second half of the book is about sleep apnea and how it can cause sleep problems. My guess is that you would get something out of reading the whole thing.

[Julie]

Have you been tested for other problems, e.g. thyroid, sugar, etc. etc.? Even though problems may feel like lack of sleep, there may be other things unrelated to it. rNot everything's about apnea even if your symptoms seem sleep related.

[Pugsy]

Do you take any medications and if so what?

[Beour]

I don't mean to sound skeptical, but with an AHI = 5 and UARS ruled out, you may be expecting CPAP to do too much to fix your bad sleep.

I'm not expecting much from the CPAP at all and never said I did. I mainly avoided getting a CPAP because of how much it costs. I only bought one last week to finally rule out that my problems are breathing related or not. If not, then I can look elsewhere

What do your sleep habits and patterns look like?

I go to bed the same time every night and try to get up at the same time. I say try because I often feel too exhausted to get up. It's a work in progress.

Finally, you might want to pick up the book Sound Sleep, Sound Mind by Dr. Barry Krakow.

Thanks for the tip, I'll have a look if I can buy it here

Have you been tested for other problems, e.g. thyroid, sugar, etc. etc.?

Yup and it all came out normal.

Do you take any medications and if so what?

None.

you absolutely must lose weight

I'm working on it. So far I've lost 5kg and still going.

see a shrink to address any issues you have that you wont admit to yet

I already have one to support me with being chronically sick and I've already discussed with him the psychological side of not sleeping well. It's not that I won't admit to having problems, quite to opposite actually. I'm well aware of it, but it's more that I'm like "now what?" and "what do I do with this?". Maybe this is something I should discuss with my therapist, thanks.

[kteague]

In addition to those things already mentioned, a few more things to consider...

Do you have a copy of your sleep study where you showed an AHI of 5? What I would want to know is how much sleep you had, what positions, and what stages . Often tests are not fully reflective of a person's usual sleep and the data that could be gathered is reported as a diagnosis when it was really inadequate to be conclusive. They can only report a diagnosis for that night's data, not for the person's overall status. My sleep doctor terms these tests "technically suboptimal" meaning it may not show the whole story. Until these issues are known, there is the possibility that your OSA is more severe than you are aware.

Were your legs wired for the study and did your study make any mention of limb movements? They can be a cause of fractured sleep. Does your partner report your legs moving much at night?

Have you already assessed any meds for potential to disrupt sleep?

I put a lot of stock in what the data gurus are able to see that has often missed the eye of medical providers. I do suggest you working with them to look for answers. Good luck going forward.

[library lady]

I have OSA, was diagnosed 4 1/2 years ago with apnea of 11. Below 8, the docs don't usually prescribe CPAP. My AHI usually registers 2 or less now. Although my sleep quality is much improved, I continue to be tired a lot as I have fibromyalgia. I'd suggest seeing your Primary Care doc if you haven't done that recently as there are many things besides apnea that can cause this. Another thing you could try is a different mask. If I recall correctly you mentioned your mask is the wisp. I believe this is either a pillow or nasal mask. I found that a nasal mask didn't work for me because my mouth sometimes opens when I'm sleeping. Any mask but a full face version ruins the efficiency of the therapy because when you breath through your mouth you don't get the benefit of it. You might want to try a FF, perhaps the Quattro Air or F10... there are many on the market and you might like a different one better but these are the two I've used that I l like the best. I'm partial to F10 because it has no forehead strap.

[zoocrewphoto]

I would definitely give the cpap a try. Many people who are treated with higher ahi numbers still do not feel better until they are below 2. An ahi of 5 means 5 sleep disturbances an hour, so you are still having disturbances even if not considered bad enough for treatment. It is also possible that your method of compensation is to be such a light sleeper that you don't sleep deep enough to have many events.

The only way to know if the cpap will help you is to use it for awhile, dial in the settings to make sure you are doing well with it, and see how you feel.

Please tell us which machine you got. Hopefully, it is one with full data, so we can help you find settings that are both comfortable and therapeutic. Basically, we would like to see you sleeping through the night, with minimal wake ups, and an ahi below 2 (and those being short, and not all clustered together). If you are able to do that and still not feeling better after a few weeks of that, then cpap may not be useful.

Since they did not see the cpap as useful, they obviously would not have done a titration. If you have an auto machine. I would start it at 6 or 7 minimum so that you don't feel suffocated. Maybe let it go up to 10 or 12. You can post the data, so we can see what it is doing. If it is a straight pressure, start with 6 or 7 and see how it goes.

Tell us what issues you have, and we can help you make things more comfortable and help with therapy.

[Zeds]

Hey, I finally got approved to post (after 10 days), so I can respond.

There's NIH research that says women with a score <5 have equivalent symptoms to men with scores 15+. You'll want to check my figures, since this is IIRC.

I'm not sure whether I'm allowed to post an outside link, but here's stuff so you can Google it. It's pretty easy to understand.

Obstructive Sleep Apnea in Women: Specific Issues and Interventions...Alison Wimms, lead author, NIH 2016

Also try this one: Gender differences in Obstructive Sleep Apnea... Lichuan Ye, lead author NIH


Post again if these details don't work.

[Julie]

You can post links... didn't you try?

[Zeds]

I'll give it a try again:

Obstructive Sleep Apnea inWomen: Specific Issues and Interventions
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5028797/

Start with that one.

Articles cited are peer-reviewed.

[robysue]

What do your sleep habits and patterns look like?

I go to bed the same time every night and try to get up at the same time. I say try because I often feel too exhausted to get up. It's a work in progress.

What time is bedtime? It's not enough to just say "same time every night."
What time is wake up time? It's not enough to just say "try to get up as the same time".

We need to understand: Are you in bed for 5 hours or are you in bed for 7.5 hours or are you in bed for 10 hours on a typical night? And how much actual sleep do you get while you are in bed every night?

Also, how long does it take you to fall asleep when you first go to bed?

How many wakes do you remember on a typical night? And how long does it take to fall back asleep?

And when you are too exhausted to get up, do you lie in bed trying unsuccessfully to get a bit more sleep? Or do you fall back asleep hard and sleep for another 1-2 hours?

All of those things are relevant in trying to figure out why you are still exhausted.

see a shrink to address any issues you have that you wont admit to yet

I already have one to support me with being chronically sick and I've already discussed with him the psychological side of not sleeping well. It's not that I won't admit to hav/ing problems, quite to opposite actually. I'm well aware of it, but it's more that I'm like "now what?" and "what do I do with this?". Maybe this is something I should discuss with my therapist, thanks.

Would your psychiatrist/psychologist be willing to work with you on a cognitive behavior therapy for insomnia (CBT-I) program? A good CBT-I program does not typically focus on trying to figure out why the sleep is bad, but rather it focuses on what kinds of behaviors you can control that can encourage your sleep to become more sound and more consolidated. An important part of a good CBT-I program is setting reasonable, attainable short term goals in regards to your sleep as well as suggestions for changes in behavior patterns to achieve those goals. As you achieve the short term goals, you start working on reasonable, attainable longer term goals for making further improvements in your sleep quality.