Could this be UARS? Any advice?

[FoggedOut]

Hello all, new member here. I’m hoping someone can help me figure out a mysterious medical issue I’ve had for ~10 years, but can’t seem to get diagnosed. I’ve been highly suspicious that my problem could be a sleep disorder, quite possibly UARS.

Here is my story:
I’m a 32 year old male, 6’, ~200 pounds (slender, yet solid build), narrow throat/airway. I have 1-3 of what I call “bad days” per week, and on these days, I feel completely useless. I’ve had this issue for so long that it’s just become a part of my life: waking up every single day and asking myself if it’s going to be a bad day that I have to struggle through. This has negatively affected my career, relationships, my own mental health.

I can always detect a bad day by how I feel immediately upon waking. Here are the symptoms that I experience on these “bad days” (I feel them immediately and they last all day):

• - "brain fog," inability to focus, can't think clearly, much effort required to speak properly, sometimes resulting in jumbled or slurred words. (This is by far the worst symptom as it is hard to fight through)
  - tight/stiff neck, jaw, and shoulder muscles on the right side, all accompanied by extremely deep aches in those muscles
  - feeling spaced out and almost dizzy, less coordinated than usual
  - trouble completing routine tasks properly: taking longer to get ready in the morning, putting hygiene products back in the wrong places, etc.
  - extreme thirst (very dry mouth), usually have cravings for carb or sugar heavy foods (it feels like my body is trying to gain energy to “snap out of it”)
  - irritability and negative mood
  - jumpier, startle easily
  - cold hands and feet
  - breathing feels restricted/hard, like I can’t take a deep breath like normal

I only experience all of those symptoms together. Also of note, I occasionally wake at night feeling like I am choking (not super often, but enough that it has scared me several times). From what I’ve read, many, if not all of these symptoms line up with UARS. What is really strange to me is that on the days where I don't have symptoms (4-6 days per week), it's like I am a different person and completely normal: mentally sharp, full of energy, no pain or aches, more outgoing and confident.

Trying to get a diagnosis:
My dentist says I am a heavy night time grinder.

I have briefly visited with a neurologist (5 minute appointment) who thinks I am suffering from migraines. I don’t have any typical migraine pain and don’t get visual disturbances, so I find this unlikely. I don't want to start taking off-label migraine prevention drugs if I don't have to (many of them are antidepressants, etc.). I'd prefer to rule out a sleep disorder issue first.

After pushing the issue with my primary care doctor, I had a sleep study done that didn’t indicate sleep apnea or UARS, according to the results, but I did have an AHI of ~3 (4.3 during REM). It was almost all hypopneas. I do snore to some degree, but not an extreme amount.

The doctors had no advice for me other than to lose weight (if you saw me, you would think I was "skinny" and wouldn't think I needed to lose weight at all). I feel like this was such a cop-out, but I know how difficult UARS can be to diagnose.

Here are my sleep study results: https://www.dropbox.com/s/y06faci6fs69h ... d.pdf?dl=0. I’m hoping someone can take a look at them and see if there is anything that stands out that would be indicative of something.

Thanks so much for your help in trying to get to the bottom of this!

[Julie]

Hi, I can't tell if you have UARS (tho' someone else might) but I'd at least do a couple of things starting now... one is to make every effort to not back-sleep as it provokes more events regardless, another would be to get your cervical area looked at for potential problems - the neurologist should have done that - and the last would be to get a really good cardiac work-up if your GP hasn't done that recently. There's no one glaring symptom that points to any of these alone, but you do seem to have a few problems that should be addressed if only to get even definitive negative answers. Your 02 seems fine however.

[FoggedOut]

Thanks, Julie. One of my biggest frustrations has been the general lack of action/enthusiasm on the part of my doctors.

The neurologist just listened to my symptoms, did a basic exam (had me follow his hands with my eyes, tested my balance, etc.), but nothing else. No neck testing of any sort.

I've been thinking about having a neck and shoulder exam done by someone (not sure where to start — physical therapist, bone and joint type place, neurologist?) because of the neck and shoulder tension being so bad. I've questioned whether my issues could be postural/spinal due to the neck and shoulder issues I have, and also the fact that I have a brother with mild scoliosis. I recently have noticed that my shoes wear very unevenly (my left foot wears through much more quickly than my right). I'm sure that if something is pinched, malformed, or otherwise screwed up in my neck or shoulder area, that it could probably cause most of my symptoms.

The reason I've been focused on sleep issues is because when I wake up is when my symptoms begin, though that could be due to sleep position instead of breathing issues or bruxism, perhaps.

I honestly thought my sleep study would indicate obvious sleep apnea. Even though it seems to discredit that idea, the fact that my AHI was still close-ish to the mild apnea score of 5 has me concerned.

After reading about UARS and how it frequently occurs in more slender people, is more difficult to spot, and creates many of the symptoms I have, I've been hesitant to totally eliminate sleep disordered breathing. I still also need to get the sleep bruxism figured out, if nothing else.

Thanks again for your input!

[49er]

I would buy your own ($50 or so) oximeter and see how your spo2 goes at night
and do it for a couple of weeks to catch those bad days and see how they correlate
take that data with your symptoms to your doctor

if your o2 does not have desats then the problem is more likely mental than physical
except for those random nights you are chokign which could be apnea or could be stress

As an FYI, you don't need to have O2 desats to have sleep apnea. On two full-scale studies, I never went below 90% and twice was diagnosed with moderate sleep apnea.

Fogged Out - Was an RDI provided on your sleep study because that would include RERAs that would indicate the possibility of having UARS? If you were just given an AHI, then I would ask your doctor for clarification.

49er

[Julie]

"WE need to start ruling out what could make him have those symptoms ...

and We "can rule out..."


Since when are you (or we) doctors?

[49er]

I would buy your own ($50 or so) oximeter and see how your spo2 goes at night
and do it for a couple of weeks to catch those bad days and see how they correlate
take that data with your symptoms to your doctor

if your o2 does not have desats then the problem is more likely mental than physical
except for those random nights you are chokign which could be apnea or could be stress

As an FYI, you don't need to have O2 desats to have sleep apnea. On two full-scale studies, I never went below 90% and twice was diagnosed with moderate sleep apnea.

Fogged Out - Was an RDI provided on your sleep study because that would include RERAs that would indicate the possibility of having UARS? If you were just given an AHI, then I would ask your doctor for clarification.

49er

========

agree

but he is feeling terrible and his test said he did not have apnea

we need to start ruling out what could make him have those symptoms adn low spo2 can do that

we can rule out rera because he had hypops which are worse and they didnt treat those
and his rera count was ZERO on his PSG

AASM standards say the RDI >5 needs treating not just AHI >5 which is a medicrap guideline
but he has neither

You totally misinterpreted my post. If the sleep study is just reporting an AHI, RERAs might not have been scored since they would have been part of the RDI. So you can't say it can't be treated until we found out whether they were scored or not. Until Fogged Out responds about that, you can't make any assumption.

[49er]

"WE need to start ruling out what could make him have those symptoms ...

and We "can rule out..."


Since when are you (or we) doctors?

Exactly Julie.

[Rumbert]

I have UARS and like you I'm skinny with a narrow airway (when my dentist happened to see my airway on a CAT scan, he recommended that I see a doctor for it because it's so narrow.) My symptoms sound very similar to yours except that I have them every day. UARS can be extremely sensitive to sleep position, and maybe your symptoms are variable because you sleep in different positions on different nights. I would recommend finding a doctor who treats UARS. I don't just mean a sleep specialist. I mean a doctor who treats UARS patients. If you're in the New York City area I recommend my doctor, Steven Park at Montefiore Hospital. Maybe he'll do a long distance consult. If you email him, maybe he can recommend a doctor in your area. In my experience it's a waste of time to try to get treated for a condition by a doctor who doesn't have expertise in that condition. If you want contact info for him send me a PM here in the forum.

I wouldn't pay much attention to the sleep lab's interpretation of your study results. In my case, the sleep lab told me there was nothing wrong with me except that I snore when in fact I have heavy duty UARS. As for migraine (I realize this doesn't apply to you) I had a migraine every day before I got a CPAP machine. After I started using CPAP, that dropped to 3 or 4 a month. In other words, in my case, UARS causes migraines.

[Rumbert]

P.S. Also, in your case you know the problem doesn't occur every night. Do you know whether the sleep study was done on a night when the problem occurred? If you felt fine the next day, then the sleep study may not show anything about the problem because the problem didn't occur that night.

[Rumbert]

and exactly what treatment is there for UARs except a cpap with extra high pressure ?

My pressure setting is 10 cm and as far as I know, that's typical for UARS patients.

Treatments for UARS include (I'm quoting here from my doctor's website) nasal breathing optimization, dental appliances, CPAP, and surgery.

Nasal breathing optimization includes such things as allergy treatment and surgery for a deviated septum. Dental appliances pull the lower jaw forward to prevent the tongue from falling back and blocking the airway. Surgery includes such things as implanting plastic rods in the soft palate and removing part of the back of the tongue.

[FoggedOut]

i suspect you have other problems
maybe depression or
stress or other psychological pressures are part of it
witness the teeth issues

are there any other external factors that could disturb your sleep
light noise odors food medicine ....

i woudl find a good family doctor who cares
tell him about being tired and the bad days
have him run a FULL set of ALL labs
and follow up with any specialists he suggests
i would expect a shrink and a board cert sleep doctor at a minimum
and if they solve the problem then that is it and get treated
else they may refer you to
heart lung ENT neurologist or others too

I would buy your own ($50 or so) oximeter and see how your spo2 goes at night
and do it for a couple of weeks to catch those bad days and see how they correlate
take that data with your symptoms to your doctor

if your o2 does not have desats then the problem is more likely mental than physical
except for those random nights you are chokign which could be apnea or could be stress
but could well be OA that you did not have the night of the PSG test

my OA was taht way
I got lucky and they saw some during the tests
but I am mostly hypops like you had

Thanks for the response, xxyzx. I am quite open to just about anything being the cause, but I can say that I have experienced these issues over a decade of different life situations (different living situations, varying stress levels from absolutely none while living with parents and attending college, to quite a bit with having new jobs, having two young children, father passing away, etc.). However, the frequency and intensity of the "bad days" have always remained constant.

My primary care doctor mentioned that sometimes stress or depression can cause similar issues, but she doesn't feel they apply in my case due to the number of years of these issues occurring with substantially different life circumstances. She also noted that I likely wouldn't be back and forth between bad and good days during any given week, etc. I tend to agree with her on these points. Also, I've had extremely stressful days that led to perfectly normal days the following day, and extremely relaxing days that led to a horrible day of symptoms the next day, so no real pattern is noticeable in this regard. I've read that the bruxism could very well be the body's response to a collapsed or less than desirable airway, and an effort to open this up.

I've had labs done, and the only thing that has been of note is somewhat elevated blood sugar, though after several different tests, it was deemed to still be within normal range. Thyroid, vitamin D, iron, etc. all look good.

I purchased and used a CMS-50F pulse oximeter to track my overnight blood oxygen saturation for several weeks. It did show that I would frequently dip down to the low 90s, but overall nothing too remarkable when I looked at the data.

[FoggedOut]

As an FYI, you don't need to have O2 desats to have sleep apnea. On two full-scale studies, I never went below 90% and twice was diagnosed with moderate sleep apnea.

Fogged Out - Was an RDI provided on your sleep study because that would include RERAs that would indicate the possibility of having UARS? If you were just given an AHI, then I would ask your doctor for clarification.

49er

Thanks for replying, 49er! I am not real clear on what they exactly tracked/calculated with my sleep study. The results document I linked indicate 0s across the board for arousals. Not sure what to make of it. The last page of that document is the only information I received from my doctors about the study.

[FoggedOut]

I have UARS and like you I'm skinny with a narrow airway (when my dentist happened to see my airway on a CAT scan, he recommended that I see a doctor for it because it's so narrow.) My symptoms sound very similar to yours except that I have them every day. UARS can be extremely sensitive to sleep position, and maybe your symptoms are variable because you sleep in different positions on different nights. I would recommend finding a doctor who treats UARS. I don't just mean a sleep specialist. I mean a doctor who treats UARS patients. If you're in the New York City area I recommend my doctor, Steven Park at Montefiore Hospital. Maybe he'll do a long distance consult. If you email him, maybe he can recommend a doctor in your area. In my experience it's a waste of time to try to get treated for a condition by a doctor who doesn't have expertise in that condition. If you want contact info for him send me a PM here in the forum.

I wouldn't pay much attention to the sleep lab's interpretation of your study results. In my case, the sleep lab told me there was nothing wrong with me except that I snore when in fact I have heavy duty UARS. As for migraine (I realize this doesn't apply to you) I had a migraine every day before I got a CPAP machine. After I started using CPAP, that dropped to 3 or 4 a month. In other words, in my case, UARS causes migraines.

Thanks so much, Rumbert. It's somewhat comforting to hear from someone else with many of my same symptoms. I can't imagine dealing with them every single day. I can barely hold it together when they happen 3 times in a week. I've definitely wondered if certain factors cause my issues to emerge on certain days, factors I cannot nail down in any way (sleep position during the night, etc.).

I have noticed that when I spend a great amount of time in "deep sleep", according to my Sleep Cycle app, that I tend to feel bad the next day. This seems counterintuitive, but perhaps if in the deepest sleep is when my issues occur, this actually makes sense. That's why the higher AHI of 4.3 during REM sleep has me intrigued. I've come across some of Dr. Park's posts, and I can certainly identify with much of the issues and concerns he has listed. Unfortunately, I am in Wisconsin, far away from his facilities.

The idea that the sleep study could prove to be a "false negative" has been one that I've been afraid of ever since I had it done. I did "luck out" and have my symptoms the day after the study, but they were not nearly as severe as they sometimes can be, leaving me to wonder what my results would look like on the much worse days.

I'm very glad to hear the CPAP has helped you so much! I really wish I could try it out to see if it provides me any relief, or if I need to look somewhere else for help.

[Rumbert]

It's somewhat comforting to hear from someone else with many of my same symptoms.

"FoggedOut" is a very recognizable name to me. The three things I used to tell people when I tried to explain how I felt was "in a fog" and "when I wake up, I feel more tired than when I went to bed" and "I feel like somebody beat me up while I was asleep."

For me at least, the main problem with UARS is chronic sleep deprivation. I was probably never in deep sleep for more than a few minutes a night since age 10.

I can't imagine dealing with them every single day. I can barely hold it together when they happen 3 times in a week.

I wasn't able to hold it together. UARS completely wrecked my life. Unfortunately it didn't get diagnosed till age 59. By then my resting heart rate was 100, I had migraines 24/7, and I could barely get out of bed. Doctors were completely useless until I figured it out on my own and went looking for a UARS expert, i.e., Dr. Park.

I have noticed that when I spend a great amount of time in "deep sleep", according to my Sleep Cycle app, that I tend to feel bad the next day. This seems counterintuitive, but perhaps if in the deepest sleep is when my issues occur, this actually makes sense.

The way it works in me is that when I get into deep sleep, my airway closes and my brain partially rouses in order to contract muscles in the tongue and throat to open the airway. Therefore pauses in breathing happen during deep sleep but I'm not in deep sleep very long. The lack of deep sleep is the main problem with UARS, at least for me.

I wonder how accurate your app is. What does it actually measure? I mean, what sort of physical input does it take in? I happen to own an EEG machine that I bought years ago for biofeedback, and I've often been tempted to try to use it to measure exactly how long I'm in deep sleep, but I've never bothered because I already know the answer is "not long enough."

I am in Wisconsin, far away from his facilities.

I think he knows a lot of the doctors who have substantial clinical experience with UARS, so he might be able to recommend somebody in your area.

The idea that the sleep study could prove to be a "false negative" has been one that I've been afraid of ever since I had it done. I did "luck out" and have my symptoms the day after the study, but they were not nearly as severe as they sometimes can be, leaving me to wonder what my results would look like on the much worse days.

Exactly. This is why I'm a fan of measuring as many things at home as possible. In another thread I just mentioned a recording oximeter. When I bought a CPAP machine, I got a Resmed S9 because it records data that you can analyze on a computer the next day. If you're like me you've got symptoms of chronic physiologic stress from sleep deprivation and you might see increased signs of that on bad days, maybe things like elevated blood pressure and higher resting heart rate.

]I'm very glad to hear the CPAP has helped you so much! I really wish I could try it out to see if it provides me any relief, or if I need to look somewhere else for help.

Yep. That's exactly how I felt.

If I were magically transported back in time to the day when I started wondering whether I had UARS, and I had to do everything over again, I would forge a prescription for a CPAP machine and buy one and try it. What actually happened was that I had to wait months for appointments and for the sleep lab to report results to the doctor and for the doctor to get around to writing a prescription. Nobody with a three-digit IQ is going to hurt themselves with a CPAP machine, and the machines aren't complicated. The medical profession has "medicalized" these machines and made it seem like you need professional credentials to set them up but for a problem like mine, this is absurd. I'd either get a very cheap cpap machine simply to try it or something expensive like a ResMed S9 that records data to help titrate it. I would still do everything else that I did (consult Dr. Park and do a sleep study and talk to dentists about appliances) but the very first thing I'd do is get a CPAP machine and try it. I'm not saying this is the right thing for everybody but people like yourself with above-average intelligence might want to consider it. Because the bottom line is that either the CPAP machine will help or it won't, and no matter how many professionals you consult, at the end of the day, the only way you'll find out is by trying it.

[FoggedOut]

"FoggedOut" is a very recognizable name to me. The three things I used to tell people when I tried to explain how I felt was "in a fog" and "when I wake up, I feel more tired than when I went to bed" and "I feel like somebody beat me up while I was asleep."

Hah, yeah, it’s by far the most irritating part of it for me. I tend to over explain, so your succinct description is what I will probably use when telling people about how/what I’m feeling.

For me at least, the main problem with UARS is chronic sleep deprivation. I was probably never in deep sleep for more than a few minutes a night since age 10.

I’m sure this has been an issue for me longer than I can remember/realize. As a kid, I always had difficulty sleeping. Back when I first started actually realizing something wasn’t quite right, I was 21. I initially thought I just had bad dull headaches that lasted all day, and when I went to the doctor for it in 2006, he just told me to cut caffeine and take Advil when necessary. At worst, he thought I might have an inflamed occipital nerve.

I wasn't able to hold it together. UARS completely wrecked my life. Unfortunately it didn't get diagnosed till age 59. By then my resting heart rate was 100, I had migraines 24/7, and I could barely get out of bed. Doctors were completely useless until I figured it out on my own and went looking for a UARS expert, i.e., Dr. Park.

I’m sorry you had to deal with it for so long, and I don’t doubt one bit that having the symptoms daily would completely upend your entire life. Horrible.

I wonder how accurate your app is. What does it actually measure? I mean, what sort of physical input does it take in? I happen to own an EEG machine that I bought years ago for biofeedback, and I've often been tempted to try to use it to measure exactly how long I'm in deep sleep, but I've never bothered because I already know the answer is "not long enough."

My app is a simple, non-scientific iPhone app that I use just for some baseline sleep quality data. It’s called SleepCycle (https://www.sleepcycle.com/how-it-works/), and it uses the phone’s internal accelerometer if placed on the mattress, or the microphone to detect sound if placed on a nightstand.

Here are some example results I get:
.

See the pattern? It’s not perfect, but more often than not, my bad days look more flat, and my good days are more rhythmic, as illustrated in the graphs.

Exactly. This is why I'm a fan of measuring as many things at home as possible. In another thread I just mentioned a recording oximeter. When I bought a CPAP machine, I got a Resmed S9 because it records data that you can analyze on a computer the next day. If you're like me you've got symptoms of chronic physiologic stress from sleep deprivation and you might see increased signs of that on bad days, maybe things like elevated blood pressure and higher resting heart rate.

I also love data. I’m a web developer, so data and tech gadgets are fun for me. I also bought an Innovo CMS-50F pulse oximeter and used it overnight to record pulse and oximetry data for several weeks. It was harder to find anything wrong or a pattern with that data, but my oxygen levels never dipped too low. Here is an example of the data I got from a bad night/day: https://www.dropbox.com/s/ijmuvizv0xtcf ... 6.pdf?dl=0. Note that the oximeter must have fallen off or was disconnected for a bit before I woke up and put it back on (gap in data shortly after the extended drop in oxygen levels just after 2am that night).

If I were magically transported back in time to the day when I started wondering whether I had UARS, and I had to do everything over again, I would forge a prescription for a CPAP machine and buy one and try it. What actually happened was that I had to wait months for appointments and for the sleep lab to report results to the doctor and for the doctor to get around to writing a prescription. Nobody with a three-digit IQ is going to hurt themselves with a CPAP machine, and the machines aren't complicated. The medical profession has "medicalized" these machines and made it seem like you need professional credentials to set them up but for a problem like mine, this is absurd. I'd either get a very cheap cpap machine simply to try it or something expensive like a ResMed S9 that records data to help titrate it. I would still do everything else that I did (consult Dr. Park and do a sleep study and talk to dentists about appliances) but the very first thing I'd do is get a CPAP machine and try it. I'm not saying this is the right thing for everybody but people like yourself with above-average intelligence might want to consider it. Because the bottom line is that either the CPAP machine will help or it won't, and no matter how many professionals you consult, at the end of the day, the only way you'll find out is by trying it.

I definitely won’t take your experience and advice lightly. I already look back at the last 10 years of my life, and wonder how much better it would have been had I not been living with these symptoms on a weekly basis. I don’t want to be in the same place 10, 20, 30 years from now.

Thanks again so much for all of your thoughts and advice!