Diagnosed UARS--Help with next steps?

[palerider]

Interesting... not sure how that works, but I respect your tech knowledge and you certainly know more about it than I do.

well, for instance, one of the things I've read said about 'uars' is that it's basically flow restrictions that are causing you to have to work harder to breath.

and that's why krakpot says "ASV for everyone!!!"

but I've read also that some people do better on a regular bilevel, because they can have enough pressure support with the bilevel to help overcome those flow restrictions.

[Julie]

Be nice if we could all afford ASVs... maybe Dr. K. will give some away.

[palerider]

Be nice if we could all afford ASVs... maybe Dr. K. will give some away.

indeed.

and the neat thing is that they'd probably work fine for most people, whether they needed 'em or not, that's part of the magic smarts of the ASV machines.

[MrKDilkington]

@blitzmr2 A lot of your issues (not just the airway/sleep/fatigue issues) can be addressed by jaw surgery. I recommend seeing an orthognathic/maxillofacial surgeon to see if you're a candidate for MMA surgery. Some of the things from your post besides sleep-disordered breathing that can be addressed by jaw surgery are:

• Mouth breathing: Upper jaw surgery can significantly expand nasal passageways depending on the specific procedure the surgeon chooses. The nasal region is a major part of the surgery because the upper jaw makes up the "floor" of the nose and is attached to the septum. I can breathe much better out of my nose after my MMA.
• Narrow palate: Can be addressed by different kinds of jaw surgeries (e.g. SARPE, which surgeons have some people get before the MMA).
• Crowded teeth: Jaw surgery is performed with braces on so your bite would get fixed.
• Deviated septum: Upper jaw surgery can indirectly straighten a deviated septum (it did so in my case). You can also have a septoplasty done while they're doing the jaw surgery if the surgeon thinks it's significant enough.
• Tongue posture: Jaw surgery can greatly improve this. My MMA included a '3-piece le fort 1 osteotomy' which gave me significantly more room in my mouth for my tongue, both height and length wise. The resting position of my tongue feels more natural now.
• Teeth grinding: Would be directly addressed by the jaw surgery.

I wouldn't recommend MMA surgery for sleep-disordered breathing alone until you've given cpap therapy an honest try, but it can be a 2-birds 1-stone sort of thing so it might make sense for you.

[blitzmr2]

That's the way I understand them as well--just allow two levels, which is beneficial unless your inhalation and exhalation require exact same pressure. I *assume* you could also run a bipap at equal pressure so that it acts just like a cpap, but that's reckless speculation.

Everything I Say Below Is Non-Expert & Possibly Incorrect

UARS is basically a condition on the 'spectrum' of breathing 'discovered' in 1993 that implies a breathing restriction (rather than blockage). This can manifest as a RERA, increase RDI, and disturb sleep wavelngth

"Some authors believe that UARS patients have an increase in alpha rhythm and an over-activation of the autonomic nervous system [13]."

Untreated UARS individuals can present low quality of life and cardiovascular consequences. Sleep and daytime symptoms, such as fatigue, insomnia and depressive mood, in untreated UARS usually increase over time [7]. The syndrome׳s characteristic esophagic pressure (Pes) negativity can cause a diastolic leftward shift of the interventricular heart septum and a consequent ventricular “collapse”. [21] The longlasting flow limitation episodes can induce a small increase in end-tidal carbon dioxide (PetCO2) that can stimulate the sympathetic nervous system activity. This could cause hypertension, and cardiovascular and metabolic consequences."

This condition is characterized (medically) by an AHI less than 5, is more common in women, and seems to be more common in non-obese patients. It also can contribute to anxiety and depression, cold hands/feet, and more. One way to think about it is that UARS-diagnosed patients that continue untreated and gain weight could (but wouldn't necessarily) eventually experience more frequent hyponeas, then apneas mainly because the restriction to airflow increases.

UARS gets less 'ink' than apneas, partly because it's less immediately life-threatening, partly because it's misunderstood, and partly because it's not recognized by most insurance companies (though there is progress there). Just as my sleep doctor primarly framed it not as "UARS" but as "not hyponea/apnea" because the most urgnet issue for many patients next is insurance/cost/next steps. For most patients with UARS, they're out of luck. My layperson take is that in ten years there will be more accurate language and more granulated data to both describe and diagnose UARS itself as a spectrum.

[blitzmr2]

@blitzmr2 A lot of your issues (not just the airway/sleep/fatigue issues) can be addressed by jaw surgery. I recommend seeing a orthognathic/maxillofacial surgeon to see if you're a candidate for MMA surgery. Some of the things from your post besides sleep-disordered breathing that can be addressed by jaw surgery are:

• Mouth breathing: Upper jaw surgery can significantly expand nasal passageways depending on the specific procedure the surgeon chooses. The nasal region is a major part of the surgery because the upper jaw makes up the "floor" of the nose and is attached to the septum. I can breathe much better out of my nose after my MMA.
• Narrow palate: Can be addressed by different kinds of jaw surgeries (e.g. SARPE, which surgeons have some people get before the MMA).
• Crowded teeth: Jaw surgery is performed with braces on so your bite would get fixed.
• Deviated septum: Upper jaw surgery can indirectly straighten a deviated septum (it did so in my case). You can also have a septoplasty done while they're doing the jaw surgery if the surgeon thinks it's significant enough.
• Tongue posture: Jaw surgery can greatly improve this. My MMA included a '3-piece le fort 1 osteotomy' which gave me significantly more room in my mouth for my tongue, both height and length wise. The resting position of my tongue feels more natural now.
• Teeth grinding: Would be directly addressed by the jaw surgery.

I wouldn't recommend MMA surgery for sleep-disordered breathing alone until you've given cpap therapy an honest try, but it can be a 2-birds 1-stone sort of thing so it might make sense for you.

Maxillofacial surgery was recommended to me all throughout my childhood and 20s, but I wasn't vain enough to do it just for perfect teeth. For this EDS I'd remove both my legs to fix, so I'd have no trouble doing so if insurance paid for it--and maybe even if it didn't. I'll definitely look into this option before doing the UPP--may even call and have a consultation this week. Thanks for sharing.

[PEF]

I believe I have UARS and have had it most of my life. There are several of us on this forum who probably have it and you can find threads about it by doing searches here.

One thing we all seem to have in common is unexplained emotional issues, such as depression and anxiety, that seems to result from sleep problems. I know for me at least, I can be the most normal, well adjusted person after a good night's sleep and turn into a lunatic after a really bad night's sleep. We are often misdiagnosed with mild bipolar disorder and all manner of other Psychiatric problems. NO therapist or Psychotropic drug ever helped me. I always complained about poor sleep, but was never taken seriously by anyone. I was always told that, when my "other issues" were fixed, my sleep would be fine. Well, it never happened.That is why I don't trust the medical profession at all.

I started CPAP about a year ago and it helps "sometimes". Basically what I mean by that is when the mask does not constantly wake me up with really minor leaks, I sleep really well with it. But other nights, for whatever reason, I wake up whenever there is the slightest mouth (or other) leak. Related to this is that I really think I need more pressure, but cannot raise the pressure much because my sleeping brain is hypersensitive to pressure changes and small leaks. One symptom of my UARS is insomnia which can make CPAP therapy challenging. I seem to do well for awhile and then something changes, a little stress or seasonal allergies, and my therapy goes off. So it has not been easy.

UARS people seem to have really defective facial plumbing. Many of us had dental braces and teeth pulled because of a small mouth when we were kids.

You are on the right track with Dr. Steven Park and Dr. Krakow. Both their books are very good. I am wondering now about ASV - I have spent so much on this already!!

My personal opinion is that dental appliances do not usually work. Surgery usually does not help much either. My reason for this is that the medical profession simply does not know exactly what part of your anatomy is the problem, so they go about arbitrarily removing things, hoping to stumble upon the answer.I think CPAP is the most likely therapy that holds promise, but currently these machines are simply not designed to help out much with UARS issues specifically. They are designed primarily for OSA patients - ditto for masks.

Just my opinion.

[Thomas F.]

In my experience the best way to force nose breathing is:

A: use flonase before bed to make sure allergy/congestion is minimized. flonase is available over the counter

B: where a cervical neck collar to bed. This prevents the mouth from opening during deep sleep. when the mouth opens your tongue falls into airway and causes the RERA

C: sleep on your side - not back

This works for me. It's simple. low cost, and worth a try.

[tan]

In my experience the best way to force nose breathing is:

A: use flonase before bed to make sure allergy/congestion is minimized. flonase is available over the counter

B: where a cervical neck collar to bed. This prevents the mouth from opening during deep sleep. when the mouth opens your tongue falls into airway and causes the RERA

C: sleep on your side - not back

This works for me. It's simple. low cost, and worth a try.

A. Flonase may disrupt sleep

B. or dental guard to keep jaw in place or pulling jaw up with a strip of adhesive

C. how do people control their positions in the sleep?? I always start sleeping on my side, but rarely wake up in that position

[palerider]

B: where a cervical neck collar to bed. This prevents the mouth from opening during deep sleep. when the mouth opens your tongue falls into airway and causes the RERA

if only it were that simple.

[Jay Aitchsee]

While you are sorting out your Sleep Disordered Breathing, it is absolutely imperative that you practice Good Sleep Hygiene. Not to do so may prevent you from being successful in overcoming your fatigue, tiredness, and depression.

Start with Granny's checklist below.

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems
CG

[Sylvia54]

C. how do people control their positions in the sleep?? I always start sleeping on my side, but rarely wake up in that position

Tan, No, you can't control your sleep position but there's positional therapy. Look up; "Rematee AntiSnore Bumper". It's very comfortable and for me it stays on and keeps me on my side, even when I wear it loose and I don't even need the shoulder straps. It's very lightweight. I'm a small person so maybe it works better for me than for some. It's made in Canada, good quality but rather expensive, costs around $110. It comes in 4 different sizes.

Then there's a similar belt that is also comfortable, half the price, but more bulky and has more velcro. That one is called "Slumberbump" and its sold on Amazon.
Positional therapy was prescribed to me prior to cpap.
I don't always wear the belt since I have intermittent upper back pain that gets worse from side sleeping too long.
It's come in handy when I've had a cold or too much congestion for cpap.
Sometimes I wear it part of the night, along with cpap. Whatever works.

[musculus]

Could it be nighttime nasal congestion causing arousals? Mouth breathing indicates high nasal resistance.

[blitzmr2]

Could it be nighttime nasal congestion causing arousals? Mouth breathing indicates high nasal resistance.

Working on it: https://drive.google.com/open?id=0BzOwF ... zlXM1pTelU

[Thomas F.]

All that you are doing is good but add the cervical collar. Keeps mouth closed. Uars is not treatable with cpap. We need a site called uars.com.

People with uars understand what I mean.