Desperate Mum to son with UARS seeking advice

[BunnyMummy]

As someone with UARS and who also had to move mountains to be diagnosed with it, I think its highly probable your son has it. Just because the PSG report templates have a RERA field doesn't mean the tech scored them. In the US (not sure if this is the same in the UK but based on what I've heard from people with UARS in the UK it probably is), scoring them is optional so most people who undergo a study just gets a big 0 in the RERA field, which implies there were none, but really means they ignored them. If you ask me this is extremely misleading, but sadly thats the way it is. I would call the center that did the study and explicitly ask if RERAs were looked for/scored or not on the study. From the OSCAR data, its obvious he has a significant amount of flow limitations so to me it would be ridiculous to think he had 0 RERAs. I also noticed another thing in the report: the center used the hypopnea scoring rule that requires 4% desaturation. Basically, there are two hypopnea scoring rules: one that says you can call it a hypopnea if there's >30% flow limitation and 4% desaturation, or >30% flow limitation ending with an arousal or 3% desaturation. The 4% isn't really a big deal in most patients since they're often quite overweight and desaturate quite quickly - but your son has a BMI of 18 and is underweight. There's no way he would desaturate in time to meet the criteria, and young people often have lower arousal thresholds in response to flow limitation. This is why RERAs are so much more prevalent in the young. I'd bet his AHI would be much higher if the second hypopnea criteria was used since desaturation is usually insignificant in UARS.

Also a quick note on his tidal volume spikes: that would be typical of someone who wakes up frequently in the middle of the night for more than a minute, which from the looks of his study he does. Ventilatory drive is completely different when one is awake vs asleep. If someone has maintenance insomnia and frequently becomes fully conscious in the middle of the night frequently, tidal volume will skyrocket while awake. Anyone here who has OSCAR can open up their daily view and can see that when awake at the beginning, tidal volume is significantly higher before sleep onset, where it plummets and normal minute ventilation ensues. https://www.ncbi.nlm.nih.gov/pubmed/3693239 Regardless, I agree that his breathing is highly irregular and warrants a pulmonologist visit.

To blame the nighttime awakenings on "anxiety" is disingenuous. The mechanisms in which UARS elevates somatic arousal and nighttime anxiety is well documented. To anyone here curious I recommend reading about UARS and alpha wave intrusion into delta sleep. This is one of my favorite Barry Krakow articles on insomnia and UARS: https://www.sleepreviewmag.com/sleep-dis...a-and-sdb/

I think you're on the right track with UARS, but that's just my opinion.

This is the night of the psg. Along with some close ups showing a few awakenings. I can't get hold of the clinic at the moment to find out about reras but will keep trying. I might be able to go through and score them myself but need to be sure about what I'm looking for so need to do some research.

Have chased up the sleep neuro appt, but at the moment I can't do anything else. If I cold find out for sure if it IS or ISN'T UARS that would be helpful.

[BunnyMummy]

another...

[BunnyMummy]

I haven't read the whole thread, so I apologize If I'm missing something. 

What is his diet like? Diet plays a huge role in people's overall well being, much more than is commonly considered.
Maybe it could be a nutrient deficiency? A food allergy?

It's not perfect, he could do with eating more fruit and veg, doesn't drink milk, but has cheese and yoghurt. No fried stuff or fast food, no red meat and rarely eats pork. Mostly fish or chicken for meat. Too much sugar from biscuits and cakes though. Drinks a lot of water but does have two cans of pepsi max a day! I doubt it is a food allergy, he doesn't have gastro problems only occasional constipation which is probably from inactivity. i know they can manifest in other ways though....

He can only breathe through one nostril and is a mouth breather during the day, and has an overbite, I still think this makes it more likely to be UARS ... but the data isn't fitting....

[funguy43]

I haven't read the whole thread, so I apologize If I'm missing something. 

What is his diet like? Diet plays a huge role in people's overall well being, much more than is commonly considered.
Maybe it could be a nutrient deficiency? A food allergy?

It's not perfect, he could do with eating more fruit and veg, doesn't drink milk, but has cheese and yoghurt. No fried stuff or fast food, no red meat and rarely eats pork. Mostly fish or chicken for meat. Too much sugar from biscuits and cakes though. Drinks a lot of water but does have two cans of pepsi max a day! I doubt it is a food allergy, he doesn't have gastro problems only occasional constipation which is probably from inactivity. i know they can manifest in other ways though....

He can only breathe through one nostril and is a mouth breather during the day, and has an overbite, I still think this makes it more likely to be UARS ... but the data isn't fitting....

I have a couple suggestions that might help the diet. I'm not saying this is the cause, or can help, but it might help, or at least it is one less possibility to worry about. 
- Continue with no milk, from an allergen prespective. Maybe try reduce cheese and yogurt, if they are consumed, make sure they are grassfed, organic, (Preferably raw). This improves nutrient density and 'pasteurization' kills enzymes and some beneficial bacteria
- Good with no take out
- If no red meat is a preference, thats fine. But a grass fed steak isn't unhealthy if thats what you're concerned about. a feedlot grain fed steak definetly is though. Also beef > pork, has better omega 6:3 ratio
- Fish and chicken are great, just make sure the fish is wild caught, the chicken is organic.
- Make sure hes getting enough meat, and fish should be at least once a week. Very nutritious
- Try taper off sugar, and grains. I would do this slowly, say going from 2 cookies to 1, and then 1 to 0.5... Same with pepsi. aspratame and acefulame pottasium are horrible for the body. If he wants something sweet, try homemade ginger ale or lemonade with honey (raw). Or even an organic fruit juice. 
- When cooking, dont use anything other than coconut oil, olive oil, avacado oil, tallow, butter, lard. No vegetable oil, corn, canola, soybean, sunflower, peanut, shortening, margarine etc. you shouldnt even have that near the house for anyone, its just asking for a stroke lol
- The fact he has constipation and can only breathe through one nostril (Allergies I am assuming) is a bad sign in terms of auto immunity and inflammation. Seems normal, and that is cause everyone has it, but everyone also has chronic inflammation. Diet changes will definitely help, specifically the elimination of grains (again, better safe than sorry, slowly is prob best here) refined sugar, pepsi max, vegetable oils, with really help. These are causing gut inflammation, (they do to everyone), and leaky gut. basically they break open the cells of the gut and get into the blood, where the immune system responds by increasing activity. this can cause autoimmune conditions like allergies. I would also try get him to eat two forks full of raw sourkraut a day, or any fermented veggie for probiotic. just make sure it is raw, so the bacteria arent dead. 
- Salt food to taste with sea salt. Just a normal amount.
- Get some wild sea vegetables/kombu/kelp/seaweed/nori. Just a little bit everyday had minerals and iodine
- Very important--- Vitamin D3. Start with 1000IU a day, see how that goes. That probably is one pill. check the label
-I would recommend filtering water. Also just have water by his side, and let him drink to thirst.
- I wouldnt add raw cruciferous veggies yet. hard to digest, espcially if not used to them. Watery veggies would be best, grilled zuchini for example. 

Also, I would highly recommend celiac testing. I would ask for a biopsy, because bloodwork can come back false negative. Even if not celiac, he could be sensitive, and Id stay off grains anyway based on his allergies.

Even if these changes dont fix the problem, he will be much healthier in general, and thats great. But they should help in at least a couple ways. The reduction in inflammation can clear up the airway, and of course reduction of allergies aswell. 

Disclaimer: Not a doctor, this is not medical advice, just my personal opinion, of a guy who just researches nutrition. Consult a medical professional before changing one's lifestyle

Best of luck! Feel free to pm me anytime if you need help diet wise. I probably wont be of much help with PAP therapy though. Also these may take time, but it will be worth it. Again be careful, one step at a time. 

- funguy43

[BunnyMummy]

Having spoken to the sleep clinic receptionist Friday she advised me that she doesn't believe they score rera's but I would have to speak to the head clinician to confirm when they are running properly again (they don't currently have one). I doubt they have scored rera from what she said.

Is this (where the green line is) flow limitation? If so why doesn't it show up in the flow limitation chart underneath?

[Geer1]

As you know I have reviewed your son's data in great detail including the night of the sleep study.

Based on the available data there are very few if any obvious RERAs. Some instances from sleep study that I thought might have maybe been RERAs did not correlate with arousals in the sleep study data. Even if a few of the instances are in fact RERAs they dont occur in high enough quantity to be the issue.

Your son does have some slightly off breathing at times but there is nothing to indicate it is causing arousals and therefore nothing to indicate it is the problem especially since Vauto has moticeably improved this breathing yet you have noticed no change. There is no way possible to review your data further as it doesnt provide the data necessary to score RERAs anyways. You need EEG (brain wave data) and effort belts etc, the only time this data has ever been collected was during the sleep study. The only way you can look further into proving or disproving UARS is have the clinic score RERAs. I would talk to the sleep consultant/sleep clinic and state that you do not believe RERAs were scored and that the original diagnosis given was UARS so it doesnt make sense to you why RERAs weren't scored.

Someone questioned my advice about anxiety. Please read and interpret the advice clearly. I am not saying anxiety is the problem causing arousal, something else is causing him to wake up. Where anxiety comes into play is the insomnia and having trouble falling back to sleep. It doesnt matter what causes a sleep arousal whether it is a breathing disturbance or not, if the body is in fight or flight mode you need to take deep breaths, initiate rest and relaxation mode in order to get back to sleep. This part of treatment applies to every cause of sleep disturbance.

Funguy43's diet comments are similar to what I recommended and I still believe you should give it a try as there is nothing to lose from doing a trial of better diet. Food sensitivities/intolerances without a doubt could be part of the issue either as a cause or by making the symptoms worse. Low fodmap diet is a proven diet for treating food intolerances, I have been doing it myself and did not realize how bad my digestion was until I tried this diet. It hasnt fixed everything but I do feel better and have also lost 20 lbs and gotten into better shape. Constipation as you mentioned is a symptom of food intolerance. Two pops, sugar in baking, large amounts of dairy are all very obvious and common causes of food intolerance and health issues related to digestion, dairy, wheat/gluten and high sugar intake are the most common causes. Histamine intolerance diet is another diet I would trial as I have a feeling it may be applicable as well considering my experiences and research and your son's eczema, asthma etc. I was given this diet information by an internist and dietician, it is all very real and causes many people significant issues and could be a significant factor for your son. You literally have nothing to lose trying it for a week or two especially when there are restrictions on other available tests/appointments etc.

You have very limited options moving forward.

Prove/disprove UARS: Only way to do this is get clinic to score RERAs.

Investigate other sleep disorders: Appointment with sleep neurologist. Pay more attention to/video record any movement issues and the periods of hyperventilating etc. Your son's hyperventilation doesnt make sense for UARS, you need to figure out why he is doing it.

Investigate neurological/autoimmune issues: This is going to be slow and painful and will likely require you confirming more symptoms and how they tie together before a doctor will take you seriously.

Investigate diet to see if it has any effect on health: This is easy, stick to a proven diet plan to start like low fodmap. Cut out lactose, sugar, wheat/gluten etc that are known and common culprits of health issues.

Anxiety: Not the cause but try to minimize it as much as possible and practice good sleep hygiene and mental health practices.

Only other home test for breathing and heart rate that could be of possible interest is buying a recording oximeter. It will tell you if his oxygen levels are decreasing due to breathing and it will also give us an idea about his heart rate fluctuations and when they occur (if following strange breathing, if breathing looks fine and heart rate fluctuating prior to arousal as sleep study would indicate, if heart rate mostly affected post arousal etc. Contec cms50f is a model that can be incorporated into OSCAR so you can see oximetry and cpap data aide by side.

Other than that I am out of ideas until we can learn something new from trying the above. There is a good chance your sons issues are actually a combination of issues and not one little thing in particular. He has too many symptoms completely unrelated to sleep disordered breathing to believe it is the only thing at play. Some sort of digestion/immune/neurological/combination is more likely imo. The more symptoms you treat(rather than focusing on one at a time), the better he will feel.

[BunnyMummy]

We have a video appt 19/6 with sleep neurologist. I'm hoping he has the sleep study as he should have been sent a copy.

I just cannot see what else this can be. I've trawled the internet for hours, read medical reports and studies. His symptoms all fit with UARS and there are extreme cases where sleep deprivation results in cognitive decline and patients becoming practically bedbound. 

I can't find any other conditions apart from sleep disordered breathing that cause raised heart rate, repeated awakenings and desaturations. I think he is so sensitive (which he is, he has had sensory issues for years) that the slightest flow limitation causes him to wake and maybe doesn't even get picked up by machine. I can't think of any other explanation. 

If he didn't have the hyperventilation I wonder if advice would be different. I think that just confuses things. He sometimes hyperventilates in the day, not very often but occasionally, when super stressed out, so I think he is just hyperventilating from the stress and shock to the body of the repeated awakenings. 

Hyperventilation at the end of sleep is from waking feeling lightheaded, with headache, dry mouth and like he hasn't slept at all. He needs to get up, eat and drink, then he feels slightly better, but doesn't want to as he feels so awful. So he gets panicky. He feels lightheaded when he sits up in bed and gets up. POTS is a possibility but I don't think you get desaturations with that. 

With the facial make up he has also, which is a indicator or UARS. 

Looking into getting an oximeter soon. That may at least help understand the desaturations. 

A hypopnea is surely a respiratory disturbance, does that not count as a rera also? It says 16% of arousals are respiratory so I assume that means he has woken up after the hypopneas? He had 18 of them. I take that to mean he can't tolerate the cpap, if taking whether they have scored rera's or not out of the equation, he has still had 18 hypopnea and 16 awakenings from them... 

I find it frustrating that we have the best machine and it could hold settings that will make him feel better but no idea how to get that. We are up to epr 4.4 now but still awful sleep. Min epap 4. If it IS uars and he can't tolerate cpap I don't know where we go as he wouldn't tolerate a dental appliance either and is terrified of any surgery. 

Diet probably plays a part in his allergies, nasal stuffiness and ezcema. But I can't see how that can cause repeated awakenings, desaturations and racing heartbeat. That has to be something mechanical and physical..

[slowriter]

While you wait on the appointment, you could try experimenting with higher pressure.

Min EPAP of 4 is super low.  Maybe try 5 and 6?

Could also try inching up the PS, so long as it doesn't raise CAs too much.

My reasons for discounting UARS are:

1. some of the posts from sleeprider and bonjour early in this thread, and some of the odd details they note
   
2. the fact that the FL graph and numbers on the VAuto, and the overall FR graph, look like fairly good breathing
   

But certainly you should bring whatever data you can to the attention of the neurologist.

[BunnyMummy]

While you wait on the appointment, you could try experimenting with higher pressure.

Min EPAP of 4 is super low.  Maybe try 5 and 6?

Could also try inching up the PS, so long as it doesn't raise CAs too much.

My reasons for discounting UARS are:

1. some of the posts from sleeprider and bonjour early in this thread, and some of the odd details they note
   
2. the fact that the FL graph and numbers on the VAuto, and the overall FR graph, look like fairly good breathing
   

But certainly you should bring whatever data you can to the attention of the neurologist.

Thanks, I've only tried min epap of 5 for one night. Only had an hour of data as he woke after noon. Will try 6 tonight.

[BunnyMummy]

While you wait on the appointment, you could try experimenting with higher pressure.

Min EPAP of 4 is super low.  Maybe try 5 and 6?

Could also try inching up the PS, so long as it doesn't raise CAs too much.

My reasons for discounting UARS are:

1. some of the posts from sleeprider and bonjour early in this thread, and some of the odd details they note
   
2. the fact that the FL graph and numbers on the VAuto, and the overall FR graph, look like fairly good breathing
   

But certainly you should bring whatever data you can to the attention of the neurologist.

This is what happened when I increased the min epap, last night split at noon as he slept past that point....previous day included at lower epap to show difference....