[CPAP] UARS, data interpretation OSCAR, what to do?

[cathyf]

I have been forming a theory based on my personal experience and noting similarities between not only SDB patients but also people with other sleep and health issues.

Before I divulge my theory I am interested if you have any of the following symptoms?

Nasal congestion, if so most nights or just occasionally?
Geographic tongue?
Tongue scalloping?
Bruxism?
Reflux, if so GERD or LPR?
Digestive complaints such as constipation, bloating, diarrhea, abdominal tenderness, foul gas etc?

Interesting direction... Does Burning Tongue Syndrome fit with your theory, too?

[Geer1]

Interesting direction... Does Burning Tongue Syndrome fit with your theory, too?

I don't know a lot about it but possibly and if there are other symptoms that I listed as well then that might support my theory. If you are interested for your specific case then post what you have in your thread and I'll comment there.

[SarcasticDave94]

Burning Tongue? Ghost pepper ain't what you're talking about I guess.



Dunno but it seems KKBB has left the building. Interesting conversation though.

[KingKongBingBong]

I have been forming a theory based on my personal experience and noting similarities between not only SDB patients but also people with other sleep and health issues.

Before I divulge my theory I am interested if you have any of the following symptoms?

Nasal congestion, if so most nights or just occasionally?
Geographic tongue?
Tongue scalloping?
Bruxism?
Reflux, if so GERD or LPR?
Digestive complaints such as constipation, bloating, diarrhea, abdominal tenderness, foul gas etc?

Well my lab said
Possible bruxism observed at times, e.g. E528, 738, 740. 

I get nasal congestion sometimes, but not that often. It's more just my nose is completely blocked not congested. different feeling

And yeah I do seem to bloat a bit, I had issues with getting stomach aches commonly up till the age of about 19.

Also might have tongue scalloping but not sure. its not severe at least

[Geer1]

You might fit my theory.

I've been on my journey for a couple years now. I have most of what I listed, plus sleep apnea (hypopnea only, although not anymore according to recent in clinic studies), horrible fatigue, weight gain, anxiety, depression and more.

I've tried just about everything to improve symptoms during this time. Only one thing has made a significant difference so far and that is dietary changes and treating digestive symptoms. What is cool about this is that improved all of the above symptoms and even a few other seemingly random ones (like a wart like growth on finger that refused to die to freezing, acid and even topical chemotherapy drugs).

My journey down this path was started by covid cancelling my sleep study and then an internist saying a low fodmap diet might help digestive complaints. Started with low fodmap diet, then I tried low allergen diets (similar to paleo), was diagnosed and started treating SIBO with antimicrobial supplements. I found out I have a definite sensitivity to dairy and a possible sensitivity to gluten. Still trying to figure out the last little bit but without a doubt these changes turned my life around AND improved my sleep quality significantly (video evidence to prove it).

So how does this explain the symptoms?

Nasal congestion is commonly associated with allergies and sensitivities. In my case my nose was so plugged up I was using Dymista (antihistamine + steroid) daily and also needing decongestants every once in a while (pretty much weekly at the worst point). ENT wanted me to get septoplasty and turbinate reduction but that had a year wait list (I eventually got it this spring). After removing dairy from my diet my congestion improved significantly, pretty much gone. A little stuffy every once in a while but I think that is still something allergy/digestion related I just haven't figured out yet.

Geographic tongue is considered a benign autoimmune disease with some ties to allergies. After removing dairy I noticed it improved a bit but was always present. Just the past few months I decided to try going gluten free as well and for the first time in who knows how long my tongue almost completely healed. If I eat gluten it comes back a little bit, overnight. If I eat dairy it comes back significantly, overnight.

Tongue scalloping. Can be caused by a couple things, parafunctional habits such as tongue pushing and bruxism can cause it but so can a swollen tongue. What commonly causes swollen tongues? Food allergies (and imo sensitivities too).

Do you know what else swollen tongues cause? Restricted airways and apnea/hypopnea. Is it a coincidence I was diagnosed with moderate hypopnea based "sleep apnea" and now it is almost gone at the same time these other symptoms were reduced? I don't think so.

Bruxism. This is a bit of a weird one, very poorly understood phenomenon. Mostly considered to be neuromuscular in nature but also present in issues like apnea and tied closely to arousals so if your sleep quality is poor there is a better chance of bruxism. Also interestingly it has some ties to parasites and there is some anecdotal evidence can be tied to SIBO and some other gut issues as well. Mine is still present and an issue but I am pretty sure it has improved, I say this because my TMJ doesn't hurt me near as much as did before I cut out dairy.

Reflux. My is LPR (silent reflux) again a poorly understood "functional" disorder. Mine was bad, I could notice it regularly and had a chronic cough and hoarse voice because of it. Doctors got me to try PPIs, raising head of bed, no acid, caffeine, alcohol etc didn't work... But getting rid of dairy (and potentially the first SIBO treatment) did. I still have a tiny bit but mostly just know from ENT scopes, it doesn't affect me like it used to.

Constipation, bloating, abdominal tenderness gas was getting bad enough I was using PEG (osmotic laxative) daily. Cutting out dairy again pretty much fixed that and I believe there have been some more minor gains since going gluten free.

The other interesting side of all this stuff is the effects it has on both our immune system (which is the reason I believe wart wouldn't heal), nutrient absorption and neurotransmitters (especially histamine). When I was first going through this my anxiety and depression were so out of control. My doctors just told me I need to worry less etc, so I took some time off went and did some camping with grandparents and symptoms all spiked. Shortly after that I figured out the dairy thing and realized it was because there was a wicked ice cream store we went to ever 2-3 days... I tried multiple antidepressants, I tried a short trial of benzos, counselling, thought maybe I would have to quit my job because it is a high stress/demand job (engineering) very little of it helped but cutting out dairy (and perhaps SIBO treatments) made a huge difference.

The thing that I find interesting is that a lot of apnea patients also have GERD/LPR and digestive complaints and so do many UARS patients. So do people with sleep myoclonus and bruxism... Odd that so many sleep disordered patients have digestive issues, couldn't happen to be a coincidence could it?

I know what these changes did for me and I have seen enough examples of other people with similar issues that makes me think that digestive issues and food sensitivities cause these sleep related issues in a lot of people. Is apnea a cause or is it a symptom? Are your small airways the issue or is it amplified by congestion etc and oversensitive nervous system affected by potential malnutrition and neurochemical imbalance (too much histamine for one example)?

The saddest thing about my case is that as a baby I was intolerant to dairy. As a child they thought I grew out of it and for the past 30 years I may have done damage to my digestive system and overall health by ingesting a food I had poor tolerance to. I may have never ended up in this situation if I had paid more attention to my digestive health (there were signs) all those years.

If this make any sense and you think there is a chance stuff like that could be at play my recommendation is elimination diets. I would start with low allergen diets (paleo is an example). Start by removing the main allergens like dairy, gluten, soy, nuts for a few weeks (4-8 ideally) then slowly reintroduce one at a time to see if any start triggering reactions (focus mostly on digestive symptoms). Try secondary allergens like eggs, fish/seafood, mustard etc if you don't find anything. Still no luck try a low fodmap/low carb diet to see if that helps (which also acts as a potential indicator of SIBO).

Anyways just an idea of something more you can try to figure out health/sleep issues. If you are like I was at the beginning of my journey you have nothing to lose by trying.

[cathyf]

Burning Tongue? Ghost pepper ain't what you're talking about I guess.



Dunno but it seems KKBB has left the building. Interesting conversation though.

Actually, sort of!

For the last year or so my tongue has felt like I recently burned it -- sore & tingly. And I have become incredibly hyper sensitive to even slightly "spicy" things. Mint toothpaste is like brushing my teeth with red pepper flakes. And REAL red pepper -- OMG it's like ghost peppers. Carbonated anything -- water, soda, whatever -- all hurt. Even salty food is irritating.

I first figured I must have burned my tongue on something hot and went to google to see if I could find any "home remedies" that would make it feel better faster. It turns out that this is a "thing"! Burning tongue syndrome or burning mouth syndrome is what it's called. It's bizarre, and appears mostly in post-menopausal women, nobody knows what to do about it, and it usually goes away after a couple of years. Or decades if you're unlucky!

I have an appointment in a couple of weeks with a university oral pathology clinic because sometimes this thing can be caused by allergies or vitamin deficiencies or the like and they should rule that out. But if they can't find some cause I'm just going to have to live with it.

As for your theory, Geer, this only appeared about a year ago -- before that I was a huge fan of moderately spicy foods like hot Italian sausage, jalapenos, red pepper flakes, etc, and loved mint, fizzy drinks, etc.

I do have 2 autoimmune diseases -- hashimotos thyroiditis & psoriatic arthritis. I also have a long (and sometimes highly amusing) history of fainting, which would go along with a certain level of autonomic nervous system dysfunction.

Interesting, though -- I have wondered if my thyroid might have been causing some airway narrowing. I've been taking synthroid for a dozen years now, and my thyroid has been down to only slightly enlarged for years.

[KingKongBingBong]

Interesting theory man. You never know TBH. I'm not sure if this will work for me cause I don't really have congestion, and no decongestant has ever improved my breathing. My current approach is to get MSE for improved nasal breathing, but I am also looking at my hormone levels to see if anything is up there (although I doubt it).

[Geer1]

Cathy, if you have any sections of geographic tongue (smoother looking sections) then those can be sensitive to spice, acid, just about everything.

King Kong, the problem with most hormone tests is that they have such a wide "normal" range they aren't indicative of an issue unless it is severe and lots of hormones/neurotransmitters cannot be measured directly. Not a single test doctors etc did said there was anything wrong with me although some tests were borderline (testosterone and cortisol a couple) but I am pretty sure all have probably improved with digestive health improvements.

[KingKongBingBong]

Cathy, if you have any sections of geographic tongue (smoother looking sections) then those can be sensitive to spice, acid, just about everything.

King Kong, the problem with most hormone tests is that they have such a wide "normal" range they aren't indicative of an issue unless it is severe and lots of hormones/neurotransmitters cannot be measured directly. Not a single test doctors etc did said there was anything wrong with me although some tests were borderline (testosterone and cortisol a couple) but I am pretty sure all have probably improved with digestive health improvements.

Yeah doctors don't know hormones so I'll be doing my research. I have had my test checked before, which is above the reference range so I'm okay, but I have no idea where I sit for other things. If I had to guess I'd say my cortisol is wack (if anything), but we'll see.

[KingKongBingBong]

Lol @ all the people who said MMA wouldn't be curative despite several meta-analysis demonstrating it is. Well I got the surgery and LIFE IS GOOD! I can now breathe not only during the night but the day too

f*** cpap for life