Could this be UARS?

I am a 32 year old female, BMI of 19-ish. I don't remember a day in the last five years when I have woken up rested (I got my Zeo 5 years ago after an extended bout of insomnia, so I keep track daily). I have suffered from nonrestorative sleep at least that long, possibly longer. My brain doesn't remember that far back anymore. I eat very healthy and have exercised regularly most of the last 5 years (lately it has been more off and on due to fatigue) and have done everything I can to improve my sleep hygiene. I had blood work done in 2009 when I first complained of constant fatigue and everything came back normal. Things have gotten worse the last few months so I finally talked to my dr and got a sleep study done (a truly horrible experience). I received the results online Saturday (follow up appt to discuss the results will be in Nov).

Time in bed: 8.5 hours
Total sleep: 6.9 hours
Sleep efficiency: 81%
Sleep latency: 25 min
REM latency: 333 min
Sleep architecture (% TST)
NREM N1 12%
N2 63%
N3 12%
REM 13%

58 arousals, 8 arousals per hour

1 central apnea, 3 obstructive apneas, 25 obstructive hypopneas = total AHI 4

oxygen saturation = normal

alpha wave intrusion into all sleep stages

The doctor on the report suggested looking into fibromyalgia. I think this is ridiculous because I am not in any pain. I have occasional situational anxiety and short bouts of depression but I don't have any of the physical characteristics of fibromyalgia.

I have occasional trouble falling asleep because my mind is racing. When I have insomnia, usually I have trouble staying asleep. I usually wake up between 1-3am to urinate and can't fall asleep again.

I have these symptoms that I've seen associated with UARS online: cold hands/feet (thought it was Reynauld's), blood pressure is on the slightly lower side of normal (I think around 110/70 or 100/70 when I last went in). Several months this summer I would get dizziness when I stood up, but it had gone away before I could get in to see my dr. I also have chronic postnasal drip and congestion, which I thought were just allergies that weren't responding to medicine. My dr said I had IBS in 2005 but I'm not sure about that diagnosis. I usually get one or two sinus infections a year.

Do the results of my sleep lab look anything like what you'd expect from UARS? I am going in to discuss the results with his nurse practitioner in a week. Should I insist they look into UARS? Go get a second opinion if they won't? Thanks.

What was your RDI?

Your symptoms and results are certainly consistent with UARS. An actual diagnosis requires a bit more information than you were provided. The standard report is intended for sleep apnea, not UARS.

One other question that you should consider is whether you had any PLMs. RLS and PLMS can also cause the number of arousals you experienced and would also be consistent with the Raynaud's Syndrome.

Since you have not seen your doctor yet, be aware that no all doctors accept the idea of UARS. Some view it as simply a mild form of OSA and not a separate condition. Many insurance companies also do not cover any form of treatment for a UARS diagnosis because they say everything that is done is unproven and "experimental".

I was not given an RDI. My heart rhythm was normal and there were no periodic limb movements or parasomnias. They didn't provide anything else in the short report but I plan to get a copy of everything so I can go for a second opinion if needed (especially if my dr does not recognize UARS). There are two or three other sleep specialists in my area and I will call them to see if they diagnose UARS before I choose a new dr. I don't even care if insurance won't cover UARS if that's what I actually have. My insurance is horrible anyway so I will pay out of pocket no matter what.

I learned this morning that the delayed REM onset found in the study wasn't normal and thought maybe it was just because the sleep study was such a horrible experience, but looking back at my Zeo data, it occurred about half of the nights in October. I guess that is linked to delayed sleep phase disorder (which I really don't think is the case) and major depression (also linked to alpha wave intrusion). So if not UARS, maybe depression. Which doesn't make me feel that much better either, hah.

loveoverbooks wrote:I was not given an RDI. My heart rhythm was normal and there were no periodic limb movements or parasomnias. They didn't provide anything else in the short report but I plan to get a copy of everything so I can go for a second opinion if needed (especially if my dr does not recognize UARS). There are two or three other sleep specialists in my area and I will call them to see if they diagnose UARS before I choose a new dr. I don't even care if insurance won't cover UARS if that's what I actually have. My insurance is horrible anyway so I will pay out of pocket no matter what.

I learned this morning that the delayed REM onset found in the study wasn't normal and thought maybe it was just because the sleep study was such a horrible experience, but looking back at my Zeo data, it occurred about half of the nights in October. I guess that is linked to delayed sleep phase disorder (which I really don't think is the case) and major depression (also linked to alpha wave intrusion). So if not UARS, maybe depression. Which doesn't make me feel that much better either, hah.

Hi loveoverbooks,

If you're going to self pay for a machine, the doctor who referred you for the sleep study may be willing to write a prescription for a pap machine since your AHI almost meets the minimum criteria to be diagnosed with Apnea at 5. You may not need to consult another sleep specialist. And if he won't write one, here is a list of folks who can:

Doctor of Osteopathy
Psychiatrist (MD Only)
Physicians Assistant
Nurse Practitioners
Dentist
Naturopathic Physicians

Best of luck.

49er

loveoverbooks wrote:I am a 32 year old female, BMI of 19-ish. I don't remember a day in the last five years when I have woken up rested (I got my Zeo 5 years ago after an extended bout of insomnia, so I keep track daily). I have suffered from nonrestorative sleep at least that long, possibly longer. My brain doesn't remember that far back anymore. I eat very healthy and have exercised regularly most of the last 5 years (lately it has been more off and on due to fatigue) and have done everything I can to improve my sleep hygiene. I had blood work done in 2009 when I first complained of constant fatigue and everything came back normal. Things have gotten worse the last few months so I finally talked to my dr and got a sleep study done (a truly horrible experience). I received the results online Saturday (follow up appt to discuss the results will be in Nov).

Time in bed: 8.5 hours
Total sleep: 6.9 hours
Sleep efficiency: 81%
Sleep latency: 25 min
REM latency: 333 min
Sleep architecture (% TST)
NREM N1 12%
N2 63%
N3 12%
REM 13%

58 arousals, 8 arousals per hour

1 central apnea, 3 obstructive apneas, 25 obstructive hypopneas = total AHI 4

oxygen saturation = normal

alpha wave intrusion into all sleep stages

The doctor on the report suggested looking into fibromyalgia. I think this is ridiculous because I am not in any pain. I have occasional situational anxiety and short bouts of depression but I don't have any of the physical characteristics of fibromyalgia.

I have occasional trouble falling asleep because my mind is racing. When I have insomnia, usually I have trouble staying asleep. I usually wake up between 1-3am to urinate and can't fall asleep again.

I have these symptoms that I've seen associated with UARS online: cold hands/feet (thought it was Reynauld's), blood pressure is on the slightly lower side of normal (I think around 110/70 or 100/70 when I last went in). Several months this summer I would get dizziness when I stood up, but it had gone away before I could get in to see my dr. I also have chronic postnasal drip and congestion, which I thought were just allergies that weren't responding to medicine. My dr said I had IBS in 2005 but I'm not sure about that diagnosis. I usually get one or two sinus infections a year.

Do the results of my sleep lab look anything like what you'd expect from UARS? I am going in to discuss the results with his nurse practitioner in a week. Should I insist they look into UARS? Go get a second opinion if they won't? Thanks.

What I find striking about this post is the lack of response. I have the same set of conditions that “loveoverbooks” has. The arousals are high while AHI is low. AHI of 4 can be just as harmful as AHI of 20. Anxiety and depression set in for sure if you don’t get your sleep. That’s all we need to know! You must compare the cost of renting a machine with buying an APAP (secondwind.com) or CPAP.com. I doubt that the insurance company will help you. Also a second test will likely not help. I never was tested because I know I would never sleep even in a home study! I just asked for a prescription and rented a machine for a month. I set it at 4cmh2o and left it on automatic. My objective was to see if I could sleep with a machine and if I felt better. My AHI was 3.8 and the pressure went up to 8 and 10cmh20. If the pressure had not gone up I think my AHI would a surpassed 5. A sleep study can only measure what happened that night. One has to wonder what good any study (lab or home) will have if you (and I) have trouble sleeping. A one month trial seemed a better option for me. Now I feel much better; but still recovering from bad sleep!

I first complained of constant fatigue and everything came back normal. ... I also have chronic postnasal drip and congestion, which I thought were just allergies that weren't responding to medicine. My dr said I had IBS in 2005 but I'm not sure about that diagnosis.

Have you been tested for celiac? Or tried eliminating wheat and/or gluten for 30 days? I have UARS as well and these problems cleared up when I ditched gluten. Fatigue persists, but I noticed a difference there too.

Unfortunately, my dr did not find a single RERA on my study results, so UARS is out of the picture. He has no answers for me. Just said to see an ENT about the chronic postnasal drip/congestion, try a wedge pillow when sleeping, and gave me a prescription for a mild sedative. Come back and see him in a month. He said I could try buying a secondhand xPAP machine without a prescription, but if there are no RERAs, I am not convinced it will do anything for me.

I have not tried eliminating gluten, but I have not been tested because I lack the genes most associated with celiac and my sister was tested and does not have it (it tends to run in families).

Thanks everyone...

loveoverbooks wrote:Unfortunately, my dr did not find a single RERA on my study results, so UARS is out of the picture. He has no answers for me. Just said to see an ENT about the chronic postnasal drip/congestion, try a wedge pillow when sleeping, and gave me a prescription for a mild sedative. Come back and see him in a month. He said I could try buying a secondhand xPAP machine without a prescription, but if there are no RERAs, I am not convinced it will do anything for me.

I have not tried eliminating gluten, but I have not been tested because I lack the genes most associated with celiac and my sister was tested and does not have it (it tends to run in families).

Thanks everyone...

Loverbrooks,

Don't forget, you nearly qualified for a diagnosis of mild apnea. I know it is easy for me to say since it isn't my money that is being spent but if you can afford to, I would ask your doctor to write a prescription so you have the option of either buying a used machine through http://www.secondwindcpap.com/ or a machine from the secondary market. And if you can afford full price, our hosts, https://www.cpap.com are good folks to buy from.

49er

Good point, 49er. My dr refused to write me a prescription but said I could buy direct secondhand from someone else if I really wanted to. I am considering it; I just don't know how likely I will be to find the exact machine I want used.

loveoverbooks wrote:Good point, 49er. My dr refused to write me a prescription but said I could buy direct secondhand from someone else if I really wanted to. I am considering it; I just don't know how likely I will be to find the exact machine I want used.

I have a Resmed S9 APAP/CPAP I could sell you for cheap?

Also, on the gluten/wheat thing: I was tested negative for celiac, but eliminating gluten and then dairy made a huge impact in my congestion. I suggest trying it. You'll probably accidentally lose weight.

One thing you don't have in your report is a breakdown between rem and non-rem AHI. The big thing to understand about AHI is that it's an average, and so it can hide big significant things behind an innocuous average. It took you 5-1/2 hours to get to REM sleep, which is the big red flag here, both because it's in and of itself an abnormal sleep pattern, and also because it means that your AHI could be really skewed. If you had 2 of those 29 events in those first 5.5 hours, and then the other 27 events after you hit rem sleep, that would mean that your AHI during the last 1.5 hours of the test is a scary 18. More than enough to cause all of the problems of sleep apnea!

I think that you should get the in-full-gory-detail copy of your report so that you can take it and get a second opinion. And you can look at it and see if anything jumps out at you as worrisome.

It's not just the total sleep you get, but adequate amounts of each individual stage are important, too. What's quite striking is that you went into rem sleep 5.5 hours into a 7 hour sleep, but then got 54 minutes of rem sleep during that last 1.5 hours. Normal sleep starts and ends in N1, but then cycles through N2, N3 & REM over and over in between in cycles that last ~90 minutes. Normally none of those chunks is particularly long. Yours looks a lot more like one long ugly cycle. If this is what usually happens in your sleep, and if you get woken up early you wouldn't get any REM sleep at all.

Sleep apnea is typically a breathing problems, so that sleep doctors are specialists in breathing. But your number suggest more of a neurological problem than a breathing problem, so that seeing a neurologist might get you more useful treatment.

Hi cathyf,

Thanks for your response. I have been using a Zeo since 2011 and I usually do hit REM earlier than that - but usually my longer REM cycles are in the morning hours, and my deep cycles are at the start of sleep. I assumed the reasons I fell into REM so late were:

1 - I had horrible menstrual cramps that prevented me from going in to deep sleep. I had taken ibuprofin an hour before the study started, but it didn't work. About 12:30 I took another dose and that finally worked.
2 - They had the two bands around my chest and abdomen so tight that I couldn't breathe deeply. Around 2:20 I finally asked if I could have them loosened and they did. After that is when I finally fell asleep for good.

This was truly a highly unusual, hellish night of sleep. Here's the sleep stage chart. Now that I take a closer look, it looks like they woke me out of deep sleep - no wonder I was so groggy when they woke me up.

I did get a copy of the results. Looks like my NREM AHI was 3, my REM AHI was 16 (!!!! the dr didn't think that was a problem??? maybe because they were hypopneas?) so it averaged out to 4. Thanks for bringing that to my attention; I wish I had noticed that when I was in there last week. Here's the chart.

I have an appt with an ENT who specializes in sleep medicine today, and a neurologist who specializes in sleep medicine in a month.