Desperate Mum to son with UARS seeking advice

[Dormeo]

When you meet with the sleep neurologist next month, please draw attention to the fluctuation of tidal volume and minute ventilation, per Sleeprider and Bonjour. If possible see whether you can do screen sharing with the doctor so you can show some Oscar charts.

This variability is quite unusual and must be addressed. If the sleep neurologist does not pay attention to these features of your son's breathing, please ask for a referral to a pulmonologist; if you don't succeed with that, raise the TV and MV issues with your son's primary care physician.

I worry that the focus on UARS, diet, allergies, and so forth is taking attention away from the key point: this very unusual variation in TV and MV.

[slowriter]

Exactly.

Really what you need to show them is the bottom right two graphs of the below image; TV and MV. 

If you look at charts of pretty much anyone on these forums, including people diagnosed with UARS like me, those graphs will look MUCH different, and comparatively flat. 

The only part of the latest screenshots you posted that look more normal are from around 12:00 to 12:45 on the last one. See how the TV and MV graph there are much flatter than everywhere else?

This is what you need to find someone to figure out.

[BunnyMummy]

At 12.40 he woke up suddenly, I was observing him sleeping. He suddenly wakes up which is when I think he hyperventilates. Maybe as the arousal from sleep is so abrupt? I will raise this but can't do anything until the appt in June In the meantime what shall I do with settings to make him as comfortable as I can? He says he feels worse today with the new settings but it's so hard, he feels crappy everyday so it's hard to see any difference and decide what to do with machine while waiting.

[slowriter]

In the meantime what shall I do with settings to make him as comfortable as I can? He says he feels worse today with the new settings but it's so hard, he feels crappy everyday so it's hard to see any difference and decide what to do with machine while waiting.

I think, personally, you just have to adjust and see what feels comfortable to him.

You can do a lot of this while awake, BTW, including experimenting with the other settings.

[Geer1]

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. 

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..

He doesn't have desaturations. If he had desaturations he would have more hypopneas which are literally defined as a desaturation over a 10 second period. If he had desaturations and hypopneas he would have a higher AHI and would have been diagnosed with sleep apnea. He doesn't have significant desaturations or hypopneas (no worse than an average person) which is why they imo incorrectly diagnosed him with UARS because he was having heart rate fluctuations. Then in the PSG it appears that they noticed the heart fluctuations were in fact what was causing the arousal, not a result of it.

If he didn't have the hyperventilation things would be different. Honestly I think that is his main issue and it isn't because of waking up. It sounds like some sort of anxiety/panic issue which if I had to guess is due to a genetic/hormonal/digestive issue considering his allergies, eczema, congestion and other symptoms that support that thought. Other options are some sort of infection/neurological/immunological response. 

Your sons breathing when asleep is only minorly disturbed at moments. The problem is that he spends half his period in bed awake and that his sleep is interrupted every 10 minutes or so on average which is fracturing his sleep structure and quality. I really don't think it is UARS and I have already told you your only options to try and further prove or disprove. Finding a magical setting for the CPAP machine or even a surgery or mouthpiece that will solve this issue is rather unlikely imo, the big thing to try was higher PS and that has been done now with minimal effect. 

The one thing I have mentioned a couple times a now is histamine intolerance. High levels of histamine cause fatigue, headaches, nasal congestion, asthma, eczema, digestive issues, irregular heart rate, anxiety and you guessed it sleep disturbances. Histamine plays a role in immune response, digestion and is a neurotransmitter. It is produced in the body and it can also be ingested. Your body breaks down histamine in two ways, the primary way is via an enzyme called DAO which digests histamine in the gut and another way is HNMT enzyme which metabolizes histamine in cells. Obviously anything genetic, digestive or otherwise that affects DAO or HNMT enzymes and the histamine metabolism process can and will lead to high histamine levels which is what is called histamine intolerance. From my understanding this is something that can't always be solved but if you can confirm it is the problem then eating a low histamine diet (which helps reduce ingested histamine and support DAO enzyme production) and in some cases taking supplements to help with the enzyme production can help. The recommended way to diagnose histamine intolerance is to try a histamine elimination diet for 2-4 weeks. 

For your further curiosity some common causes of histamine intolerance is digestive problems including some autoimmune diseases and also dysbiosis including small intestine bacterial overgrowth (SIBO). I was starting to wonder about SIBO as it matched some of my digestive symptoms, I was tested and this past week I found out I that I do have SIBO. I haven't started treatment yet so don't know how much of the problem it is but I do have a cousin that fights with SIBO and know it affects her pretty significantly in numerous ways and unfortunately hers keeps on coming back. Very likely due to stress and anxiety (which both wreak havoc on digestion) caused by adopting 3 kids with fetal alcohol...  

Digestion provides the brain and body with the products it needs to work properly. If your digestive system isn't working properly for whatever reason it can cause all sorts of issues including sleep disorders as almost all if not all of your neurotransmitters are synthesized via digestive processes. That is why people with gluten intolerance or almost any other digestive disease also have neurological and overall symptoms besides just digestion issues. I believe many of your son's other symptoms have been with him for life indicating that he probably has some sort of predisposition to some sort of digestive/metabolism/immune issue. If that is the case then he is already at a disadvantage for developing more severe problems from this stuff which is a good chance as to why his asthma etc is getting worse as time goes on. Don't write off diet and other causes, they can easily create the problems your son is having and imo are more likely than UARS.

[Illorum]

they imo incorrectly diagnosed him with UARS because he was having heart rate fluctuations. Then in the PSG it appears that they noticed the heart fluctuations were in fact what was causing the arousal, not a result of it.

They literally didn’t score RERAs. You can’t say for sure what was causing the arousals until they do.

[Geer1]

They literally didn’t score RERAs. You can’t say for sure what was causing the arousals until they do.

They scored the majority of arousals as being cardiac induced though, not spontaneous. I don't know what exactly the criteria is for cardiac arousal but I assume they would have to check that there aren't signs of something causing the heart rate changes (for example that they take place before arousal, that there aren't signs of increased respiratory effort etc). Without knowing the exact criteria it is hard to comment on, this article talks about sympathetic nervous system activation which would make sense and would also help explain what appears to be panic and hyperventilation, the question is why though. 

https://www.researchgate.net/publication...influences

It will be interesting to know what the sleep neurologist thinks, glad to hear that that he will be able to see him in a few weeks.

[BunnyMummy]

I tried again to get an answer about whether reras were scored today. Spoke to my sons consultant. I asked him if reras were scored or if there were none as there is a line on that box. He says thats because there are none.  I said it mentions 16% of arousals are respiratory in the break down, surely he would have reras if that was the case, as he has hypopneas? He can't see that chart (?!) he gets all huffy talks about how he has told me about over analysing things and we just need to wait for the London hospital appt. His tone is so condenscending. His breathing his totally corrected on cpap he says. I know the majority of you think I am barking up the wrong tree here, but I need to eliminate that possibility of him being non compliant on cpap / bipap, maybe as he has a low arousal threshold, and whether those heart rate arousals would become respiratory if reras were included. He says the idea is to get my son onto a stimulant to get him more alert in the day.

Please can someone explain, how can you have hypopnea without a rera? Or flow limitation? Surely the fact that you get a hypopnea means there is flow limitation?


No more updates at the moment, our video call appt later this week has been changed to an in person appt at the hospital three weeks away. Son says he knows sometimes he is hyperventilating because he wakes up suddenly, is annoyed / stressed that hes been woken up when he just wants to sleep. I still think the hyperventilation is anxiety. I will mention all this to the new consultant, problem is, if they are as condescending and have as little patience / time for me as the current guy I don't know where to go next.

Geer1 thank you for your email, I will get around to replying soon!

[BunnyMummy]

Out of curiosity I changed the preferences today to UF1 20% flow restriction for 6s and UF2 50% restriction for 6s and it bought up so many events, mostly UF2.

[Geer1]

Did you try talking to the clinic that performed the sleep study about the RERA or only the consultant? I would cut out the middle man if possible.

Hypopneas are periods of decreased ventilation that cause a drop in oxygen level or cause an arousal.

RERAs are periods of increased respiratory effort that cause an arousal.

The two are similar but also different. It is possible to have hypopneas without an arousal. RERA's rarely cause a drop in oxygen level (otherwise they get scored as hypopneas). RERA's often aren't scored as they aren't mandatory, if a clinic doesn't normally score them then they have to be requested to do so. In your sons case they likely weren't scored but I also don't think it would change the cardiac arousals. I don't know the criteria for scoring a cardiac arousal but an unexplained arousal is defined as a spontaneous arousal (which were in the report). A cardiac arousal must mean that the heart rate is causing the arousal whereas in a RERA/UARS the arousal is what causes the heart rate fluctuation.

As for UF1/UF2. One of the reasons that sleep disturbances are defined over 10 seconds is that disturbances over shorter periods are common. I have similar numbers when I apply those settings to my own data. Extra settings like this need to be taken with a grain of salt and I would use it more of an idea of good night vs bad night rather than an indication of a problem as there is no clear indication of what number of these events would be considered bad.

Anxiety is a serious problem and can mess up your sleep even more so than sleep disordered breathing. Just being frustrated about waking up can trigger the sympathetic nervous system making it that much harder to sleep. The problem that causes anxiety is often not the main problem but rather how a person perceives and reacts to it. Learning to control these reactions is key. Treating the anxiety (CBT, better sleep hygiene, CBT for insomnia, lifestyle changes, medications etc) most likely won't make your sons issues go away in entirety but I guarantee you it will improve things. There is no reason to get frustrated or anxious because you woke up, that only makes things worse. Instead think I woke up, oh well, I am able to function on reduced sleep and will get back to sleep soon. Take some deep breaths, calm the nerves, relax and fall back asleep. If the issue is serious enough that he can't do this on his own then he might need some help via medication.