Desperate Mum to son with UARS seeking advice

[BunnyMummy]

The consultant still believes he has UARS though I think. But that he has a circadian disorder and another issue causing the awakenings. From the transcript I sent you he said the breathing was fine. But he also said the 'machine was correcting all elements of breathing dysfunction'... Looking back at that night on the data do you see rera that weren't scored? I'm not sure if that data is still on my drive now.

Thyroid can cause heart issues and a lot of the symptoms my son has, but twice his test has come back normal for that.... 
?

[Geer1]

In one way I have a bit of an issue with his statement because there was no real test done prior to the PSG to confirm he had breathing dysfunction. As mentioned the "diagnosis" of UARS was based on heart rate fluctuations. Heart rate fluctuations that were still present during the PSG even though the "breathing dysfunction" was corrected. That said his comment meant that there were no signs of breathing dysfunction present in the sleep study.

UARS could be part of the picture but it most likely isn't the whole picture. The problem isn't his breathing it is his fatigue symptoms, many if not the majority of members on here have worse breathing issues then your son has. Even if the arousals are caused by UARS (which the data doesn't point to) then the main issue still probably isn't the arousal but rather the reaction(why your son wakes up and hyperventilates and then spends so much time asleep). This is not typical for UARS and this is why there were so many concerned comments earlier in this thread. In UARS the arousals are many of the times nearly instantaneous(or very short lived), they can be enough to pop you out of the sleep stage you are in and screw up your sleep quality but not usually into full blown wakefullness for minutes on end like this and not numerous times each night. 

If this is only UARS then it is fooling the PSG, the sleep techs, the consultant and the members on here which all seems rather unlikely.

Edit: Yes thyroid can cause problems but if the tests were fine it likely isn't the issue. You just have to keep digging, eventually you will find something. If you keep the focus on things that have already checked you are unlikely to find the answer.

[BunnyMummy]

In one way I have a bit of an issue with his statement because there was no real test done prior to the PSG to confirm he had breathing dysfunction. As mentioned the "diagnosis" of UARS was based on heart rate fluctuations. Heart rate fluctuations that were still present during the PSG even though the "breathing dysfunction" was corrected. That said his comment meant that there were no signs of breathing dysfunction present in the sleep study.

UARS could be part of the picture but it most likely isn't the whole picture. The problem isn't his breathing it is his fatigue symptoms, many if not the majority of members on here have worse breathing issues then your son has. Even if the arousals are caused by UARS (which the data doesn't point to) then the main issue still probably isn't the arousal but rather the reaction(why your son wakes up and hyperventilates and then spends so much time asleep). This is not typical for UARS and this is why there were so many concerned comments earlier in this thread. In UARS the arousals are many of the times nearly instantaneous(or very short lived), they can be enough to pop you out of the sleep stage you are in and screw up your sleep quality but not usually into full blown wakefullness for minutes on end like this and not numerous times each night. 

If this is only UARS then it is fooling the PSG, the sleep techs, the consultant and thmbers on here which all seems rather unlikely.

Edit: Yes thyroid can cause problems but if the tests were fine it likely isn't the issue. You just have to keep digging, eventually you will find something. If you keep the focus on things that have already checked you are unlikely to find the answer.

Yes it's unlikely. Then we have spent since late August 2019 down a rabbit hole in the wrong direction. With lots of waiting and money for private appointments, machines, masks etc.

It's hard because at the moment, pardon the pun, it seems the path of least resistance. And one I can do something about. It's so hard to get him appointments because of the fatigue and rotating sleep. Every time we go it is a huge struggle. Then with no referrals to any consultants it was easy to buy a machine and go down that path. He feels like giving up often and I dread more appointments and consultants. The sleep one I really clashed with and was made to feel I was being pushy and wrong to ask questions. I'm an anxious person myself and not good at being forceful. I come across as a pushy parent and I need to get him to take more responsibility for his health but he is in such a hole he doesn't feel he can.

Part of me hates the sleep guy being right too but if he is, he is. There are tons of different sleep disorders, hopefully there are some answers out there somewhere!

I will say I have read lots of articles about insomnia and UARS, people lying awake for ages not being able to get back to sleep, and people being disabled because of it. But if the data doesn't fit it doesn't fit. 

I presume it won't do him any harm being on the vauto? I can't get him to give it up at the moment.

[Geer1]

The vauto was a good test and helped answered questions that would have otherwise been unanswered. The other option was paying for a poor quality rental and you would have just been left wondering if it was because it was a strange brand/model of machine. The vauto is the best machine for this situation, it also seems to provide some minor improvement, if it is more comfortable for him that right there is a big improvement and worth it. There is definitely no harm in using it.

With UARS there are people that get woken up and have insomnia but I think it is anxiety that keeps the person up rather than UARS. The UARS maybe triggers an anxiety attack in some people but definitely not all. I struggled with anxiety and was having horrible sleep because of it, I would wake up and not be able to get back to sleep and for a while was maybe sleeping 4-5 hrs a night. Just getting anxiety under control made it so that if I do wake up it is usually only for a moment or a few minutes now and I get much better sleep because of it. My sleep is still quite disturbed when I watch video recordings but I rarely now remember waking up or having trouble falling asleep.

Your sons hyperventilation has always perplexed me, I don't know if it is because he wakes up and is having like a little panic attack or if it is something he isn't entirely aware of or what is going on or what the story is. If he is aware in those moments and it is anxiety/panic related then sitting there hyperventilating for 10 minutes is only making things worse. He needs force himself to take deep slow breaths to calm down and then he will get back to sleep much faster. CBTi (cognitive behavioral therapy for insomnia) is a good thing to research and it can teach some good habits to help reduce insomnia and stress related to worrying about poor sleep. Even if you can't find out what is causing the sleep disruptions learning how to minimize the effects they have will make a big difference. If he isn't aware of those situations (not truly awake) then that makes things more complicated but I believe you have mentioned he is awake and that is what the PSG showed too.

[slowriter]

I was just rereading the first part of the thread to refresh my memory, and sleeprider was suggesting early on, in effect, this wasn't UARS or SBD-related, and therefore that PAP therapy in general, including bilevel, was unlikely to help.

The vauto definitely won't hurt; it's a great machine.

But it's likely that remaining fixated on UARS as an explanation (which you do seem to be doing) is keeping you from finding the underlying cause.

The last chart I see here, on the vauto, still shows that crazy range of minute ventilation, with the max at 24. We still don't know why.

I sympathize: you're stuck with a situation where you don't really know where to turn for help, in the midst of a pandemic where that help is less available.

I'd think the sleep neurologist you were referred to could be promising though.

I haven't checked the whole thread: did he ever see a pulminologist?

[BunnyMummy]

I was just rereading the first part of the thread to refresh my memory, and sleeprider was suggesting early on, in effect, this wasn't UARS or SBD-related, and therefore that PAP therapy in general, including bilevel, was unlikely to help.

The vauto definitely won't hurt; it's a great machine.

But it's likely that remaining fixated on UARS as an explanation (which you do seem to be doing) is keeping you from finding the underlying cause.

The last chart I see here, on the vauto, still shows that crazy range of minute ventilation, with the max at 24. We still don't know why.

I sympathize: you're stuck with a situation where you don't really know where to turn for help, in the midst of a pandemic where that help is less available.

I'd think the sleep neurologist you were referred to could be promising though.

I haven't checked the whole thread: did he ever see a pulminologist?

The fact that he initially felt better on the first 9/10 days on pap is what made me think we were on the right track with that.

He hasn't seen a pulmonologist. When the NHS will do referrals again we can ask for that. The problem is no-one seems to pay any attention to Oscar as it's open source and I'm using that data as a basis for referral. Maybe a GP will. Any idea why the psg didn't pick up on hyperventilation?

[Gideon]

Your words for your doctor are "I know this/OSCAR is not the tool you use. It is my hope this info will give you some guidance on what or where to look for my son's problem."
Make screen prints to give to your doctor. Do you have a laptop? Put OSCAR on a laptop and take it to your doctor with you. Show your doctor how to zoom and scroll. Wether he shows it or not he will be surprised at the detail.

[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?

[Illorum]

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.

[slowriter]

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.

Those of us expressing skepticism about UARS, and concern that focusing on that could obscure a more serious (or at least more difficult to diagnose) condition, are not doing it solely based on the PSG. Read bonjour and sleeprider's post on first couple of pages, for example. Or, look at the charts she posted on the vauto.

And discounting the MV variability; I just don't understand that.

I (someone diagnosed with UARS based on in-lab PSG), for example, just looked back at all my data, since last Summer. My 95% MV number is below 10. This person is 18!