Desperate Mum to son with UARS seeking advice

[slowriter]

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.

I still think, as I was intending to suggest in my earlier post, you need to try to simplify this as much as possible, so they also don't get overwhelmed and frustrated. 

That screenshot you posted above provides a lot of information. I can't imagine any sleep expert would look at that and not immediately take notice.

You could preface it by simply stating the basic situation in a sentence or two (like "we've trying everything, and he's still sleeping extremely poorly"; or however best to characterize it), and then asking what's going on with the TV and MV in the screenshot.

[fejsbukpejdz]

Ohh I had panic attacks, anxiety and depression...

flow limitations ALL the time.

On top of that obstructives.

I had such panic attacks I thought God is coming to punish me once and for all. I felt immanent doom of all dooms. 

Remember, lack of sleep over days and months and years can completely mess up your logic and understanding.

You will lose the sense of what is right and what is wrong. You won't be able to see obviously and logical things.


It's catastrophic.

I was addicted to some substances and I am clean now for many years but I already felt guilty anyway to begin with and had anxiety. This totally messed it up for me.

Thank God  I had a brother who studies medicine and figured out something is wrong, put me on CPAP it worked so so... Helped me a lot, symptoms are almost gone and I can somewhat sleep.

But flow limitations and arousals persist. 

I was about to buy a BIPAP machine on my own and get it set up because the sleep study is months ahead.

On the other hand one kind doctor said he has Somno HD and everything can be set up in a hotel room so he will do it. He is quite skilled.

He says this Somno HD can deted RERAs and UARS.

He will do it in 5 days and then I will buy the machine.

 

I wish you all the best and your son.

This forum is more than helpful!! 

Remember this disease can be treated. IF NOTHING HELPS there tracheostomy!!!! 
Just to calm you down, this can be treated.

But that is long way ahead, do not even think about it.

There are different machines, different settings, oral devices, positions, minor interventions and major surgeries and ultimately even tracheostomy if it gets quite severe.

So please do not worry. Remember, this is a tunnel and there definitely is light at the end of it.


Breathing is essential to life and this forum helps us breathe... literally

One kind fela from here told me he will help me set up the BIPAP machine in the forum. I am foreever thankful forever!

[fejsbukpejdz]

This is what I consider flow limitation.

REd line shows the expiration
Greeline the inspiration
and the blue line shows how flattened that inspiration is.


It should not be flat.

That is what I have EVEN when desaturations fluctuate only 3%

From my understanding that is school book example of UARS.


Precisely because it does not go lower and does not get restricted more, yet it causes arousal that makes my breathing higher in volume and you can see that on that graph at the end of it on the right side.

If you can find flattened inhalatory lines, it is flow limitation.

If you can get rid of obstructives but those flat lines persist, there are very little pulmonary diseases that could cause this.


Lungs are an elastic organ. If they can not stretch for some reason they simply won't stretch. Period.

There is no mechanism that will make them stretch in a linear way so that the inhalatory flow rate appears flat like that.


It is what the name says>> exacty>> flow limitation.

One possible flow limitation could be maybe deeper in trachea but that would be appearant when he is awake as well right????


So here are my two cents because I am new into this but I am a medical student so I know a lot about physioloy and anatomy...

If he has flattened line upon inspiration, I can not think of anything else but simple limitation of airflow. 

There is no diseases I can imagine that could create such flat line and only ONLY in sleep.


So do not worry.

If this really is UARS it can be treated.

I am so irritated how everything is going I wish I could just get permanent tracheostomy and forget about this issue. 

But that is dumb I guess.

We have to be patient and see which therapy, which machine, which oral device... and trust me I know surgery is not looked upon with ease here... Trust me, if indeed some HARD anatomical part is making an obstruction, such as the shape of palatine bone and sorrounding tissue or the hard cartilage of the airways etc... Maybe it can be treated with a surgery.

In my opinion and in my case if someone tells me to cut up my soft parts and muscles or tongue... I would question and reject. Because, soft parts can stretch, relax, and why not treat them with oral device and Bipap then?

So please make sure to inform yourself very very very very very well.

This forum is amazing and people helped me a lot! 

Do not trust the doctors easily. They simply don't care and don't have time for fine details and trust me devils in the details. I say this as a medical student because I've seen people suffer often so much and doctors just moving forward, not looking what they do.

For example, I was prescriped 4 different antidepressants and neuroleptics and even VALIUM!
ALL that while having UARS probably and Obstructive Sleep apnea definitely (my AHI was 8 on pressure 6)

CPAP got rid of apnea but flow limitations persist. Gotta get that bipap and get it done. 

But had I listened to the doctors, I would have been in a psychiatric institution on 5 different psychoactive substances!!! 

Instead this forum helped me a lot

[fejsbukpejdz]

Also that's wag the dog when everyone says cpap can be used for UARS...

I have no idea why people keep saying that.

What is achieved with that pressure? Maybe in some cases airways can be opened so much to let air in somehow!!! Maybe!

But more likely with BIPAP you can force more air in because from my understanding Bipap oscilates from breath to breath and then when you inhale, it creates that pressure gradient you need.

So even if the opening is very small, the pressure will be higher and thus more air will flow through that little opening.

I guess flow limitation persists still, however with an increase of pressure, appropriate volume can be "squeezed in".

Will that minimum pressure you are at manage to open up that narrow passage? Maybe.. maybe not... why gamble?

CPAP is not ideal for it. BIPAP is.

I am noob and on this forum it was made clear to me. And it makes sense.. I guess?
May some gurus correct me if I am wrong

[Geer1]

Her son is already on bipap as a test for UARS. The increased PS has not proven to improve things which is why UARS is unlikely.


BunnyMummy here is what uptodate, one of the main resources doctors use for information, says about UARS. If falls inline with my views on UARS and that being that there should be obvious flow limitations for extended periods of time prior to arousal. Your son has arousals but rarely has the obvious flow limited breaths (especially extended length of time of flow limited breaths) prior to them.

Upper airway resistance syndrome — Upper airway resistance syndrome (UARS) occurs when airflow limitation due to increased upper airway resistance (ie, RERAs) induces arousals from sleep, leading to excessive daytime sleepiness [78]. 

During recordings of nasal airflow, periods of flow limitation longer than a hypopnea (minimum one to three minutes) are often used as indicative of sustained upper airway resistance [79]. However, there is no consensus about the optimal detection, proper measurement, or degree of clinical impact. 

While UARS was previously classified as an independent disorder, it is now considered a type of OSA. 

Unlike patients with classic OSA, patients with UARS have few discrete apneas or hypopneas or episodes of desaturation, but do have prolonged flow limitation and evidence of arousals on PSG, albeit with less overall sleep fragmentation than OSA. Thus, the study may be interpreted as absent or mild OSA, requiring no treatment. 

Partial upper airway obstruction is treatable with nasal continuous positive airway pressure (CPAP) and patients have good adherence to therapy [79]. We have also used dental appliances with good success.

[BunnyMummy]

Small update here.

We have spoken to the sleep department at Guy's in London. Not the neurologist that we were originally referred to, but a general sleep physician. He was very open to any extra information I could supply and provided an email for me to send any charts. Said it all helped to get a view of what might be going on. My jaw dropped! Such a different attitude, it was so refreshing.

I have sent some Oscar charts which he said were interesting and has shared with his respiratory colleagues. He wants son to go in for another psg. He could only see snippets of the breathing on the one his previous hospital sent over, and said they showed reasonable looking breathing, but more fluctuation than he would normally expect to see.

I've requested a Tosca when he has the sleep test, incase there is anything going on with co2 levels. Unfortunately it's going to take a while to get a test, and he is limited by his rotating sleep pattern too, but we are in the cancellation list so it's just a matter of waiting.

It's very early days but the sheer fact this his attitude is entirely different gives me hope. 

Son has started on methotrexate for his skin, which hasn't had any effect yet, but again it's early days, only 2 weeks in.

A couple of things that have been drawn to my attention since are a very subtle form of breathing problem even harder to detect than UARS as there are rarely rera's, it affects the Cap pattern, I need to look into this more. Also hypoventilation syndromes but these are just ideas.

[Illorum]

I'm so glad you know about CAP! I was about to make a post about it here on too. I made a post on reddit last week about it: https://www.reddit.com/r/UARS/comments/h...n_subtler/

[BunnyMummy]

That's you?! Yes someone who commented further down on reddit has told me about it... Trying to get my head round it at the moment!

[Illorum]

Haha yep, that's me - I just put a little tidbit in my public reddit profile: https://i.imgur.com/6hTCOCB.png

Let me know if you need any help with CAP, I've spent a lot of time researching it lately

[sheepless]

Illorium, CAP is new to me, maybe others too. I don't want to hijack this thread (maybe a brief tangent) but would like to know if you've learned what to do about CAP. increasing pressure support? it seems like a no-brainer that SDB not rising to the level of an 'event' can cumulatively cause lingering fatigue etc. I don't think the pattern in the image you link to is all that uncommon. maybe start another thread, if you're willing?