Desperate Mum to son with UARS seeking advice

[BunnyMummy]

What I don't understand is the shallow breathing. If breathing is not the issue why mention shallow breathing in the report? Would this make him a candidate for AVS? PLM are preceeded by shallow breathing.

I have observed his breathing myself prior to cpap become fainter and shallow, then the awakening. Could that be due to a neurological issue rather than airway constriction? Most cases of heart rate rises in sleep are due to sleep disordered breathing from what I can find online. He has no evidence of heart issues in the day. Thyroid can cause heart fluctuations at night, but he has been tested for this three times now.

I understand changes in diet would probably help him in general, and maybe it is time to consider methotrexate which we have been thinking about for a while as his skin is a daily battle. We were hoping the sleep would improve making skin able to heal better at night. But with this constantly disrupted sleep his skin never improves. He scratches a lot at night, but again from watching him sleep it is always the sudden awakening, then scratching rather than scratching on his sleep causing him to wake up. 

Those with UARS that 'fail' cpap and bipap.... Could it not be that he can't tolerate the machine well and that is causing him to wake up? Again it doesn't explain the heart spikes. 

Will chase up the neuro and start titrating on vauto.

[slowriter]

To have UARS, you have to have flow limitations that lead to arousal; aka RERAs.

In my sleep study I had ~20/hour.

Certainly those RERAs can and do lead to HR spikes, and did in my case.

But the study summary you posted seems to say that something else is going on.

[BunnyMummy]

To have UARS, you have to have flow limitations that lead to arousal; aka RERAs.

In my sleep study I had ~20/hour.

Certainly those RERAs can and do lead to HR spikes, and did in my case.

But the study summary you posted seems to say that something else is going on.

Thanks. I'm confused by the fact that compared to those who post on here with UARS he has little flow limitation. It doesn't add up. 

Sorry, I'm being dense but you mentioned before that p4 mentions rera's but I can't see where. Is it not just that they didn't score the rera's?

Could it be that he is SO sensitive to the slightest limitation that before it even shows up on the machine he wakes up?

Don't get me wrong, it would be great if it wasn't UARS, it's a pain in the arse to treat, but as he has the fatigue and inability to sleep well, plus facial characteristics it always fitted to me that that's what it was.

[Gideon]

Reviewing the sleep study. Your son does not have UARS. The AHI is low, ok, but the RERAs are essentially non-existent.
PLMs. Only 2 are associated with arousal, this is nothing to be concerned with, but the PLM index during, and only during non-REM sleep, is 28 or about 1 every 2 minutes. This is worth pursuing but may not be what you are looking for. You are heading down the right path to explore this. Keep in mind there were not enough arousals associated with this to be a problem. Definitely mention the scratching to the doctors, the 'twitching' related to that activity may also be related to the PLM.

[Geer1]

What I don't understand is the shallow breathing. If breathing is not the issue why mention shallow breathing in the report? Would this make him a candidate for AVS? PLM are preceeded by shallow breathing.

I have observed his breathing myself prior to cpap become fainter and shallow, then the awakening. Could that be due to a neurological issue rather than airway constriction? Most cases of heart rate rises in sleep are due to sleep disordered breathing from what I can find online. He has no evidence of heart issues in the day. Thyroid can cause heart fluctuations at night, but he has been tested for this three times now.

I understand changes in diet would probably help him in general, and maybe it is time to consider methotrexate which we have been thinking about for a while as his skin is a daily battle. We were hoping the sleep would improve making skin able to heal better at night. But with this constantly disrupted sleep his skin never improves. He scratches a lot at night, but again from watching him sleep it is always the sudden awakening, then scratching rather than scratching on his sleep causing him to wake up. 

Those with UARS that 'fail' cpap and bipap.... Could it not be that he can't tolerate the machine well and that is causing him to wake up? Again it doesn't explain the heart spikes. 

Will chase up the neuro and start titrating on vauto.

The shallow breathing comment is shallow breathing not meeting scoring criteria. In other words not severe enough to be a hypopnea, apnea etc. On CPAP he does have flow limitations at times as seen in this image. His 95% flow limitation was around 0.06 on average on the autoset.

   

This is an example of shallow breathing from the night of the sleep study and likely what they commented on as there were a few instances that night. Looking at the report there was no arousal related to this so it wouldn't be considered a RERA. Just as they say some type of unscorable shallow breathing. 

   

These types of examples are what made me think the breathing may be having an effect and possibly at least part of the issue. From your experience so far that does seem to be the case as he does better on CPAP than off it. This is the big reason trying the vauto was worthwhile because it allows better treatment of these flow limitations and shallow breathing periods. The PS of 4 already improved these situations noticeably and improved 95% flow limitation to 0.01. There were still the odd periods of flow limitation/shallow breathing which is why I recommended increasing PS to 5 as it should round out the breathing even better but maybe 5 is a bit too high and somewhere in between is the sweet spot. 

It isn't clear if they scored RERA's which is kind of annoying since it should have been the primary investigation considering they believed your son has UARS... You could ask the consultant why RERA's are 0 as it is unlikely he had absolutely no RERA's that night. I do think there is more than just RERAs and UARS being the issue though.

All of this stuff, your breathing, heart rate, digestion etc is all controlled by what is called your autonomic nervous system. Your autonomic nervous system is made up of a sympathetic and parasympathetic nervous system. The sympathetic nervous system is related to fight or flight mode whereas the parasympathetic nervous system is related to rest and relaxation. Things as simple as controlling your breathing can change which nervous system is active, that is why they teach to take deep slow breaths to help calm down anxiety because it literally tricks your body into thinking you are safe and sound which changes the hormones etc being released which then affect all sorts of your bodies systems. When your son wakes up hyperventilating he is in fight or flight mode and that is why it takes him a while to slow down his breathing, calm down and fall back to sleep. 

Chronic fatigue syndrome, fibromyalgia and numerous other idiopathic diseases (as they like to call them) all have ties to autonomic nervous system dysfunction. They know all this to be true but what they don't know is what causes these issues although they have found numerous things that are tied to it. For example digestion problems have been found to be the main issues in some people with chronic fatigue, that is why I am currently trying different diets. Some people develop these issues after a viral infection, Epstein Barr virus is a known cause and something your son probably should be checked for if he hasn't already. Most people with fibromyalgia have what is called alpha wave intrusion(awake brain signals) during deep sleep I believe this can sometimes be the case with chronic fatigue as well but less so, they don't know if this is possibly the cause or just a symptom though. Some people have clinical depression due to low neurotransmitter levels that can cause this stuff too and once they find the right medication it makes a big difference. Immune system reactions either to allergens or autoimmune disease can cause these types of symptoms as well. In short there are a host of possible issues causing your sons sleep disturbances, many of which are more readily tied to other health issues he also has (the asthma, eczema etc).

The one medication that the consultant was asking the neurologist about is a central nervous system depressant which is used for narcolepsy but has also been found to help fibromyalgia patients because it stops the alpha wave brain intrusion. Your sons PSG didn't note any alpha wave intrusion but I just wanted to give an example of why it might help. Sleep disturbance caused by movements are also treated with different nervous system depressants or neurotransmitter modifying drugs (antidepressants, dopaminergic drugs etc). Your brain can be one of your biggest causes of sleep disturbance which is why anxiety and depression are big issues with sleep, in large part because of how they also affect your body through the autonomic nervous system responses.

In short I think your sons airways, asthma etc are possibly part of the picture. Treating them will help but I think there is something more to the picture. If this was strictly UARS then it is an atypical case. As my doctor has been telling me we need to try and work on everything. Improving diet and finding what diet works best for me, improving activity, controlling anxiety/depression, getting lots of rest/relaxation, trying some different medications to see if they have any effect. Treating one at a time provides minor help, treating multiple has made a bigger difference. Still looking for my answers, they are different for everyone though.

[BunnyMummy]

Reviewing the sleep study.  Your son does not have UARS.  The AHI is low, ok, but the RERAs are essentially non-existent.
PLMs.  Only 2 are associated with arousal, this is nothing to be concerned with, but the PLM index during, and only during non-REM sleep, is 28 or about 1 every 2 minutes.  This is worth pursuing but may not be what you are looking for.  You are heading down the right path to explore this.  Keep in mind there were not enough arousals associated with this to be a problem.  Definitely mention the scratching to the doctors, the 'twitching' related to that activity may also be related to the PLM.

Crikey. OK. Thank you. So the original diagnosis of UARS was incorrect? 

He refuses to even try sleeping without cpap as he says he feels better since having it. He showed a big improvement for the first 9 or days of having it back in November last year. He was wide awake sitting up in bed ready to get up after 7 hours sleep. But still tired in the day. I can't explain this, unless it was psychosomatic ??

[BunnyMummy]

Thanks Geer1. He had it opened up to 15 ipap last night, 5 epap and 4 PS. But had a bad night. Or woke up in a worse state than usual let's say, as every night is a bad night. I will go back to the settings you gave me as he seemed more comfortable with them. Back to the drawing board then

[Gideon]

I am not a doctor, I can't make a diagnosis.

One problem with UARS is there is no standard criteria for diagnosis.  The table in the Wiki shows 5 different, but similar definitions.  The similarities are bolded.
UARS is seen clinically as excessive daytime sleepiness, with the PSG showing little to no AHI and considerably more RERAs
Look at the table here. http://www.apneaboard.com/wiki/index.php...#Diagnosis

IMHO your son does not have UARS.

[BunnyMummy]

I am not a doctor, I can't make a diagnosis.

One problem with UARS is there is no standard criteria for diagnosis.  The table in the Wiki shows 5 different, but similar definitions.  The similarities are bolded.
UARS is seen clinically as excessive daytime sleepiness, with the PSG showing little to no AHI and considerably more RERAs
Look at the table here. http://www.apneaboard.com/wiki/index.php...#Diagnosis

IMHO your son does not have UARS.

I really value your opinions as I know you guys on here deal with UARS every day. 

It's a shame he never went in for full psg rather than home test. He ended up having one anyway but on cpap months later. Maybe he should have another test without it. Possibly that will happen when he sees the sleep neurologist. 

He did have the Epstein Barr test twice, once after the start of his chronic fatigue in December 2018. Negative. Blood tests always have slightly raised esonophils which is to do with allergies and being atopic.

[Geer1]

Simply put the "diagnosis" of UARS wasn't a diagnosis. It was done with an oximeter that is only capable of measuring oxygen and heart rate. The conclusion was a guess based on heart rate fluctuations without the presence of oxygen desaturations. The consultant assumed if there was an issue it would be related to breathing(since that is the most common sleep issue and most easily treated) and since the data didn't support sleep apnea he said it might be UARS. The CPAP trial was his test to see if his theory was correct, it helped but didn't solve all of the problem. Hence why he later set up the in clinic PSG which for the most part refuted UARS and made him realize that there was some other stuff going on which is why he referred your son to a sleep neurologist who will have more experience dealing with these more difficult cases.