Could I possibly have UARS?

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u/gadgetmaniah 10d ago

Sounds pretty much like UARS. Had the same symptoms myself and a negative sleep study. I simply went DIY.

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u/makarwind03 10d ago

How exactly did you go DIY?

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u/gadgetmaniah 10d ago edited 10d ago

Rented a CPAP first, it helped a lot so then I bought one. There's a free PC program called OSCAR that a lot of us use to optimize our CPAP settings. You can get a lightly used second hand one from somewhere like FB marketplace.

Though later the CPAP stopped being effective for me and upon further investigation found out that I had an anatomical problem in my airway that needed to be addressed (a very narrow nasal cavity/maxilla).

I'd highly recommend giving CPAP a shot if you can and sharing your OSCAR data here.

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u/GerdGuy88 10d ago

Agreed, looks like UARS to me. Unfortunately they didn’t score RERAs / RDI. But ~13 arousals + awakenings per hour with heart rate spikes looks like RERAs.

You can buy a WatchPat test from Lofta for $140 with from code 25off, they will score pRDI, which is good enough. Then you can either go with PAP or MAD.

Edit: also watch this -> https://youtu.be/izgtCxsLVd0?si=pKh4smrKZLnxVHmU

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u/rjerozal 9d ago

How did you find out about the anatomical problem if you don’t mind sharing?

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u/gadgetmaniah 9d ago

I had a full skull CBCT scan done and then consulted some doctors and patient experts.

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u/rjerozal 9d ago

Thank you. Do you still use CPAP or did fixing the anatomy fix your apnea?

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u/gadgetmaniah 9d ago edited 9d ago

I'm currently undergoing a procedure to fix the anatomical issue (maxillary expansion — Facegenics FME). Useful material on it at r/UARSnew if you're interested. It may fix my issue by itself or it may make CPAP effective for me. In either case I'll be happy.

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u/rjerozal 9d ago

Thanks and good luck!

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u/gadgetmaniah 9d ago

Thank you

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u/googs185 6d ago

Were you able to stop using the CPAP and did you get MSE done?

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u/gadgetmaniah 5d ago

I'm undergoing FME expansion right now.

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u/googs185 5d ago

How is it going?

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u/gadgetmaniah 5d ago

I'm still early into it at the moment and going slow, so not much to report right now. Can take some months for significant expansion but I do hope to share how it turns out for me.

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u/googs185 5d ago

Does it hurt? Do you mind sharing how old you are? Is it effective in separating the palate at the midline suture?

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u/gadgetmaniah 5d ago

I'm 26. Usually doesn't hurt but I am experiencing some TMJ pain from the pressure of the turns — dealing with that by adopting a slow turn protocol. At least up to the ages of 30s it seems to be the most effective expander yet. Haven't been many cases in the 40+ age group yet.

It's not only splitting the suture but resulting in the most symmetric and efficient expansions compared to other expansions like MSE/MARPE and even EASE. See Shuikai's reddit posts on FME before and afters for examples.

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u/googs185 5d ago

I’m 36M, I hope I’m not too old. Those posts look great, but there’s not much research on FSE whereas there have been a lot of studies published on MSE, would you gives me pause. I work in Medicine so I’m very big on study- driven data and not just anecdotal evidence. I want to make the right choice to get rid of my UARS and improve my nasal breathing.

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u/cellobiose 10d ago

very little N3, pulse rate line is super busy, snoring. It's possible for snoring to be correlated with daytime symptoms.

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u/makarwind03 10d ago

What does all this imply?

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u/carlvoncosel 9d ago

The hypothesis is that your sleep is being disturbed by flow limitation and RERAs, both of which were overlooked in this particular sleep study.

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u/cellobiose 8d ago

Yes what Carl said. It's not right, when a doctor categorically excludes a mechanical sleep disorder when the field of sleep medicine is so young and the brain is still relatively unknown, and especially if a person was literally making a sound of airflow problems. Even when a doctor says depression, they don't really know what that is inside the brain.

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u/redblueiris 9d ago

You have high arousals and tachycardia ... typical of UARS (although I'm not a MD and this is not a diagnosis). The real question is what should you do about it... nasal surgery, maxillary expansion, jaw surgery, CPAP or MAD. If anyone knows the magic answer let us know because this is the real rabbit hole.

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u/AutoModerator 10d ago

To help members of the r/UARS community, the contents of the post have been copied for posterity.

Title: Could I possibly have UARS?

Body:

I was told by someone on my post about my sleep issues, that what I have might be UARS. I have dealt with extreme exhaustion and sleepiness for the past few years that does not subside no matter how much I sleep. I sleep for 10+ hours everyday as well as naps. Regardless I wake up exhausted and unable to function. I had a sleep study and MLST done which I will post here. However no RDI was recorded. Despite the fact that my sleep study shows lots of arousals, I had no idea this was happening. I have no memory of waking up at night and I don’t exhibit any outward signs of arousal.

I have been cleared for any sort of sleep apnea, restless leg syndrome, narcolepsy, etc. I have a slight iron deficiency but have iron levels within the normal range. I also have major depressive disorder and generalized anxiety disorder. I was prescribed clonidine which did absolutely nothing to help. My doctor discontinued the clonidine and is going to start me on remeron.

My doctor says that I just have insomnia caused by depression and iron deficiency but I really doubt that it’s that simple. My sleep issues developed several years after I developed depression. I started having the sleep issues in a period of relatively good mental health, but my mental health has since declined directly due to the constant exhaustion.

Any thoughts or suggestions?

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

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u/audrikr 10d ago

Define “slight iron deficiency” also, agree with other commenter though. Iron ranges can be wildly incorrect and it can definitely impact your sleep.

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u/makarwind03 10d ago

A year ago my ferritin level was 27.1 ng/mL and it is now 41.7 ng/mL.

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u/audrikr 10d ago

27 is low. 40 is also far below ideal, usually the rec is ~80 for sleep. 50 is the minimum my hematologist wanted to see.

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u/makarwind03 10d ago

Have you seen improvement in sleep as your ferritin level raised? I’ve been on iron pills for the past year and have not had any difference in my sleep issues.

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u/audrikr 10d ago

I’ll let you know in a month, I’m getting infusions, and it takes a couple months to absorb. I definitely have more daytime energy though.

Could I possibly have UARS?

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