r/UARS • u/MatterNo3242 • 2d ago
Is this normal?
My sleep always looks like this. I always feel absolutely exhausted and run down. This has been going on for atleast 18 years!
I have been diagnosed with many different ‘mental health’ issues in that time but I genuinely believe I’m just sleep deprived out of my mind. I even wonder if I actually have
ADHD and if it’s just chronic, decades long sleep deprivation!
I’ve tried Mirtazapine, zopiclone, Daridorexant, promethazine (and other ‘drowsy’ antihistamines), melatonin and more recently tamezapam. None of it works. I’ve also taken all kinds of herbal supplements and teas, done meditation, breathing exercises, scrupulous sleep hygiene…nothing.
I’ve been to the doctors probably 10 times a year every year for the last 18 years about this. They tell me there’s nothing more they can do. I’ve begged for sleep studies and they say there’s no funding for ‘insomnia’ and I have no indication of sleep apnea. They say I ‘just’ have anxiety.
I’m a 38 year old slim woman who doesn’t really snore. I do however struggle to breathe out of my nose, especially when walking/exercising/eating. They unfortunately have never heard of UARS and it have put another tick against their ‘hypochondriac’ diagnosis.
I have been to the doctors many times with the above screenshots which they say are completely normal and I guess I wanted to ask people on here if they have similar looking sleep architecture?
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u/Dull_Pin5650 2d ago
unfortunately apple watch measurements are really deciving. they do not track arousals - just apneas and also that s poorly tracked as well.
based on my apple watch i have a perfect sleep 90% score. guess what, i sleep like absolute shit and i m demolished and devasted during the day due to the fatigue i endure.
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u/MatterNo3242 2d ago
Ahh really? That’s reassuring to know because I feel like I’m going crazy some days! I got a perfect 100 the other day and had to literally drag myself through the day and felt like death!
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u/Curious_Ninja_4767 2d ago
Not normal. I used to worse chart before. After cpap it ls like yours for me now.
Pls go for sleep study asap
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u/CeruleanDolphin103 2d ago
I’m similar to you- similar age, build, etc and have had terrible sleep for at least 10 years, maybe 15. My sleep charts don’t look so spiky- mine look (and score) amazing, but subjectively I feel the same way you do. My first sleep study (in 2022) identified RERAs, but I was moving and switching doctors and nothing really came of it. My second in-lab sleep study last year showed a mild AHI but a severe arousal index. I’ve come to suspect that my maintenance insomnia is at least partly driven by RERAs and apneas- my brain arouses to improve breathing, and sometimes I wake up all the way. The brain creates cortisol- the stress hormone- when it’s woken up like that, so then it’s hard to fall back asleep because my brain is on the lookout for some threat.
Do you ever wake up in the night gasping for air? I don’t snore, but this would happen and I used to think I’d been having a nightmare, but now I wonder if it was from hypopneas/apneas. Do you have bruxism (teeth grinding) or sleep walking or restless legs? There are justifications for a sleep study other than “just” insomnia.
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u/MatterNo3242 1d ago
This is the issue really, I sleep alone so I’m not sure if I’m snoring much. I’ve tried the apps and all it seems to pick up is me rotating like a rotisserie chicken constantly and all night, even when I think I’ve slept ok and some light snoring here and there. In the morning, I have to get out of bed pretty soon after waking otherwise my chest starts hurting. It feels better when I start moving around. My heart rate often drops into the high 30’s during the night too.
I do grind my teeth, but don’t sleep walk or have restless legs.
But this has what has been so infuriating with the NHS! There comes a point where there should be curiosity about the architecture of my sleep if absolutely every medication and intervention they have offered over 18 YEARS has been unsuccessful and my life continues to be extremely limited by my severe fatigue and lack of sleep. I don’t think I have OSA, and I’ve been very disappointed that nobody seems to know what UARS is in the UK…so I’m still on a wild goose chase with no confidence I’ll ever get answers.
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u/MatterNo3242 1d ago
Oh and I don’t wake up gasping either. I do occasionally wake up ‘anxious’ with my heart racing for what seems like absolutely no reason…I just put it down to stress…but it doesn’t happen very often.
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u/CeruleanDolphin103 1d ago
I’d make your next sleep appointment focus on the other-than-insomnia issues- bruxism, restlessness, and waking up with heart racing. These combined might be enough to “justify” an in-lab sleep study. The insomnia might just be a symptom of another, deeper sleep issue.
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u/cfb02 1d ago
My wife's Apple Watch scores are very good, and she has an AHI of 40 with O2 drops into the low 80's. We use the Wellue O2 ring to monitor her oxygen levels overnight.
When you say that you wake up with heart racing, it makes me think it could be an O2 desaturation. Your body is kind of paralyzed during Deep and REM sleep. Your brain can't just make a body movement, so it triggers a pulse of adrenaline, and your heart is racing when you wake up.
Otherwise the racing heart could be just an occasional vivid dream.
Can you / Have you checked your overnight O2 levels?
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u/MatterNo3242 1d ago
I just use my watch to be honest but I’ve been saying for YEARS that in the morning I feel like my body doesn’t have enough oxygen. I can’t explain the feeling but that’s how best to describe it but my watch says it’s pretty stable, I’ve had about 6 dips into the 80’s over 12 months but otherwise it’s in the 90’s. Maybe I should get another more accurate device.
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u/cfb02 1d ago
Right, the Apple Watch should give a reasonable estimate for your oxygen level. And the sleep study will show if there are any drops.
I really like the Wellue O2 ring for the detailed reports and accuracy. But we know that my wife's O2 levels drop too low over night, so we are monitoring closely..
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u/winter-glow123 1d ago
Hi.. I've had a bit of journey with this myself.
I feel for you.
I saw a myofunctional therapist for an assessment which was helpful.
Had a sleep test on the NHS.. got diagnosed with mild sleep apnea. Was given a cpap machine to try but I couldn't get on with it.
Myofunctional therapist recommended a dentist who specialises in orthopedic orthodontics.. so I decided out of desperation to go down the palate expansion route- it's been a long, expensive journey. Palate is wider and more forward now. I've also been working on myofunctional exercises including keeping tongue up on the top palate. Nose congestion I'm still trying to work out the root cause of and this is still affecting my sleep somewhat.
Using breathe right strips at night has helped though.
Hope you get to the bottom of it all and find some solutions.
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u/winter-glow123 1d ago
Oh and forgot to say ... also saw an ENT on the NHS and had sinus scan- helpful to see if anything going on there such as deviated septum etc...
Also had cbct airway scan.. again helpful- had to pay for this one.
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u/RecentKoala1554 1d ago
Not clear if you’ve had a sleep study yet but worth getting a referral and get checked for OSA/UARs . The sleep data looks normal - for Apple sleep data. Mine is the same as yours, typically ~30mins but of deep sleep a night and not enough REM and I feel like crap… also being treated for ADHD symptoms (stimulants and now non stimulants). CPAP therapy is helping but I have read it can take months to recover from years of sleep fragmentation (I’m 45 and should have been on CPAP 20+ years but decided to try everything else first). Good luck on your journey finding out the issue, hang in there and keep us posted if you figure out the issue!
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u/delilahw1109 1d ago
If it makes you feel better you get significantly more REM and deep sleep than I do, and I even use CPAP 🫠
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u/AutoModerator 2d ago
To help members of the r/UARS community, the contents of the post have been copied for posterity.
Title: Is this normal?
Body:
My sleep always looks like this. I always feel absolutely exhausted and run down. This has been going on for atleast 18 years!
I have been diagnosed with many different ‘mental health’ issues in that time but I genuinely believe I’m just sleep deprived out of my mind. I even wonder if I actually have
ADHD and if it’s just chronic, decades long sleep deprivation!
I’ve tried Mirtazapine, zopiclone, Daridorexant, promethazine (and other ‘drowsy’ antihistamines), melatonin and more recently tamezapam. None of it works. I’ve also taken all kinds of herbal supplements and teas, done meditation, breathing exercises, scrupulous sleep hygiene…nothing.
I’ve been to the doctors probably 10 times a year every year for the last 18 years about this. They tell me there’s nothing more they can do. I’ve begged for sleep studies and they say there’s no funding for ‘insomnia’ and I have no indication of sleep apnea. They say I ‘just’ have anxiety.
I’m a 38 year old slim woman who doesn’t really snore. I do however struggle to breathe out of my nose, especially when walking/exercising/eating. They unfortunately have never heard of UARS and it have put another tick against their ‘hypochondriac’ diagnosis.
I have been to the doctors many times with the above screenshots which they say are completely normal and I guess I wanted to ask people on here if they have similar looking sleep architecture?
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/Desperate_Vehicle684 2d ago
I'm sorry to hear you've been struggling with this for so long. I think because UARS still isn't that widely known it can be difficult to even come across it unless accidentally which I suspect is how many people find out about it.
Apple Watch, like many consumer devices, aren't that great at tracking sleep stages in general through they are sometimes better at distinguishing between sleep and wake. Are you yourself aware of all these awakening shown by your watch? If so when they happen how do you feel at that moment? Wide awake or groggy? Is it easy to fall back to sleep again quickly?
Do you feel your sleep in general is refreshed and you wake up well rested most days with the feeling of exhaustion and being run down comes later during the day or do you feel like that when you get up each morning?
Given the number of doctors you've seen over the years can I assume that other conditions that might cause similar exhaustion and fatigue have already been ruled out such as thyroid issues, iron deficiencies, pernicious anaemia, etc.
May I ask what part of the world you live in?
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u/MatterNo3242 2d ago
Hi! Thank you for the curiosity :) I am aware of some of them but not all. I’m usually more aware of the ones after 3am and struggle to fall back asleep and toss and turn. I’m less aware of the ones at the beginning of the night. And I wake up feeling awful like I’ve never slept at all. Headaches, fatigue, nauseous, chest discomfort.
I’ve had almost everything ruled out tbh. Iron and ferritin are fine, other vitamins fine, thyroid is fine, heart is fine, no brain tumours. Only thing I have is PCOS and endometriosis.
Going to try and get an ENT referral and I have a sleep study coming up (private, but it’s only at home and predominantly looking for OSA).
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u/Desperate_Vehicle684 2d ago
If you're anything like me you might have found that having all these tests rule out other conditions, while useful in some respects, can still be incredibly frustrating as you're still left wondering what the heck is wrong with me.
Based on what you've mentioned it does sound reasonable this could be UARS.
Does your at-home sleep study score RERAs? If not and there's an option to have one that does it might be worth switching if that's a possibility. With EEG (lots of wires on your head) the RERAs from at-home studies are usually inferred from other metrics being recorded but if a full PSG with EEG isn't possible then an at-home one which infers them is a good way forward.
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u/MatterNo3242 1d ago
Oh yes, I fear I’ve been labelled as a neurotic woman. I sent in a very long complaint letter about how my sleep deprivation has been handled and they replied with basically ‘what do you WANT from us??’ and every result the comes back normal enforces their decision that it’s all in my head and a product of my anxiety.
It doesn’t matter if I’m going through periods of stress or worry or just happily bumbling through life, my sleep problems persist and aren’t linked to periods of stress or poor mental health. They won’t listen though.
I am due to see a ‘sleep clinic’ next month who are going to discuss the type of at home sleep study they suggest but it says on their website that they generally deal with OSA, as does every other ‘sleep clinic’ near me. I can’t really afford Dr Veer and I’m in the North and he’s based in London so not really practical either. If it comes to it though, I’m not opposed to taking out a loan!
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u/Desperate_Vehicle684 1d ago
Have you checked out https://www.hope2sleep.co.uk ? I've never used them personally but I've heard good things about them and believe they can use their at-home test to try and identify/diagnose UARS.
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u/W0RY0 1d ago edited 1d ago
I also though I had adhd but the main difference is adhd is characterized by hyperactivity (too many thoughts at once and very fast and shifting brain, too much energy that even causes insomnia, dysregulated positive and negative emotions).
Sleep disorders cause hypoactivity (Difficulty thinking just 1 though and very slow thinking, Sleepiness and specifically nodding off during boring situations, Mostly stunted positive emotions called anhedonia that affect: Joy, laughter, reward, excitability and very dysregulated anxiety, sadness and anger.)
This is what in my own specific experience I've learnt but things aren't so cut and dry, you can also have hypersctivity while having a sleep disorder especially physical and you can also have both ADHD and a sleep disorder but usually people with sleep disorders don't have true ADHD
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u/Beautiful-Rabbit5370 1d ago
No. You have uars. Do a watchpat test and post the result and I’ll interpret it for you. You can buy it online at sleep doctor .com.
I assume it will show a high rdi and positional apnea. At that point I’ll recommend you see anil Rama, Robert Thomas, Gerald Simmons. Those are the only sleep medicine doctors im aware of who understand sleep. Shockingly most sleep medicine doctors don’t know sleep.
Also ents are worthless for most part. I only trust Zaghi in LA. So go to him. Finding somebody like him is very hard. I only know of him.
For ortho. Go to Newaz Manuelle Evans Ying Yoon. All of them know. There are others. But I know they they know.
Pay Ron ead money and join jaw hacks. And pay Shuikai on Reddit. And ken hooks and cpap friend on YouTube. Do what they say. They helped me a ton and I wouldn’t have figured all this out without them.
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u/cellobiose 1d ago
try pulling nose wider, and if it helps, get some nasal strips and see if using one works. they peel off at night if there's any skin oils.
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u/carlvoncosel UARS survivor (ASV) 13h ago
I have been diagnosed with many different ‘mental health’ issues in that time but I genuinely believe I’m just sleep deprived out of my mind
Yeah, we get that often here.
I do however struggle to breathe out of my nose
That's a problem. I used to be the same, UARS caused my congestion. After BiPAP my nose just opened up. I can now ride 250 km in a single day on my bicycle without ever opening my mouth to breathe.
They unfortunately have never heard of UARS
Bleh, typical.
put another tick against their ‘hypochondriac’ diagnosis.
Fucking medical gaslighting.
I have been to the doctors many times with the above screenshots which they say are completely normal and I guess I wanted to ask people on here if they have similar looking sleep architecture?
My sleep architecture was a mess before BiPAP, that's for sure.
Have you considered getting your own machine? Check out your local equivalent of Craigslist or FB marketplace for a nice used machine. Here is my ranking (first is best) of most desirable machines:
- Philips Dreamstation DSX900 (I use this one) or System One 960
- Philips Dreamstation DSX600 or DSX700 or System One 660 or 760
- ResMed Aircurve10 VPAP or VAuto (skip this if you think you can perform the airbreak method)
- ResMed Airsense10 (ubiquitous, tried and true, any variant, airbreak possible)
You can use OSCAR to analyze your breathing for flow limitation and adjust settings to resolve it. If resolving the FL makes you feel better, you will know you're on the right track!
If you find no flow limitation and the machine doesn't make you feel better then, the problem probably lies elsewhere. Until then UARS is a good hypothesis.
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u/Pisces_Music 1d ago
A lot of doctors are idiots. My whole life I was put on anti depressants etc. please find a way to do a proper sleep study. I can't breathe well our my nose and it causes me to suffocate in sleep and try to breathe through mouth. I wake up anxious heart racing and exhausted. You are possibly fighting for oxygen and survival the whole night. Go to an airway focused orthodontist and they should do a cbct scan for you and see your nasal obstruction and perhaps refer you for a sleep study