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Desperate Mum to son with UARS seeking advice
#71
RE: Desperate Mum to son with UARS seeking advice
I just read through that file you sent me. Some good things mentioned and actually a better appointment then I expected, you had to fight for a few things but I think things are headed in the right direction, unfortunately this stuff is a slow process even in critical cases like this...

Some of the PLM/movement comments seem to indicate that might be part of the issues. "they're not specifically respiratory or spontaneous actually. Subcultural (?) arousal index is quite high" is an interesting statement regarding the arousals. Subcultural doesn't seem to be the right word(and not sure what the right word is) but it will be interesting to see what the sleep study says about this. This movement and arousals are probably a big part of where the sleep neurologist comes into play so that is probably a really good appointment. Is your son taking the pregabalin now?

The consultant doesn't seem to think breathing is the problem and it sounds like good luck getting a pulmonologist appointment through him. I don't think you should write off getting a pulmonologists opinion though. I think what you need to do is approach that request from the asthma/general doctor position focusing the more on breathing issues during the day, if needed stretch the truth a bit and say he is having more trouble breathing during the day etc. Mention you are curious if it is affecting his sleep but that sleep consultant doesn't seem to be sure if that is the case. I can tell you without a doubt that there are breathing issues at night but they aren't normal obvious breathing issues like apneas, flow limited breaths etc. Lots of the breaths are just irregular and I was hoping the sleep study would notice/comment on that.

The consultant refers to the trial as bi-level for the most part then claims NIV and bi-level are the same at the end when he calls it NIV. I am not sure exactly what he is setting up for a trial and it could just be difference in terminology as in a way even basic CPAP machines are considered NIV. I think of NIV as a machine capable of maintaining some amount of ventilation and that is kind of based on what I have seen say on Resmed's website where bilevel machines are listed separate from non life support NIV machines. If the consultant gave you information about where the trial is going to be set up maybe you can contact them and ask for details on what machine he is going to be trialed on, maybe get lucky and speed up the appointment too.

As for buying a machine sometimes you can find used ones fairly cheap (people that got it paid for by insurance and then give up on treatment etc). Who knows, if you know some older people start asking around if any of them might have a bilevel machine available, it is not as uncommon as you might think. Otherwise I would wait until the trial period, there is no point in buying an expensive machine right now that might not even solve the problem.

I can't help but go back to my thoughts at the beginning of this thread. If at least part of this is trouble breathing out against the pressure does APAP actually help or is it making things worse? Your son was diagnosed by oximetry alone and based I believe off heart rate fluctuations which are just due to arousals which it sounds like the sleep consultant is saying are still present on APAP. I would have been interested to hear his thoughts on whether or not APAP is probably helping, he made the comment that AHI was good but your son was never diagnosed with sleep apnea so why should he have bad AHI... If you had access to a recording oximeter I would be interested to use it a couple nights with APAP and a couple nights without to see if there were any differences.

Anyways in summary I think bi-level trial and sleep neurologist appointments are good. I'd try to get pulmonologist appointment through general doctor. If you can get access to a bi-level machine(used or through friends etc) or oximeter we can do a couple tests in the meantime otherwise stuck playing the waiting game...
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#72
RE: Desperate Mum to son with UARS seeking advice
Regarding the subcultural... I had my phone in a mac, stupid coat to wear considering, and as I moved to try to see the screen with report it was rustling and I can't hear the word properly!

Well I keep referring to it a bi level, he doesn't actually refer to it as he doesn't think he warrants a different machine. Interesting that on his private consultancy website he has niv as treatment for obesity hypoventilation syndrome, and cpap/apap as the only machines listed. Now we saw him on the NHS, but I wonder if it the same machine. Doesn't Krakow use ASV for UARS? Is that the same as NIV? The trial is at the same hospital, I will try and find out the name of the machine from the receptionists who are more approachable than him!
I was so focused on everything he said that when I picked up the preglabin I didn't notice it was capsules. Son can't / won't swallow capsules, we can try opening them but it probably tastes foul so not sure how that will go! And expect they are capsules for a reason. Will see if we can get tablet form. If I had been more with it at the time I could have asked.
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#73
RE: Desperate Mum to son with UARS seeking advice
Subcortal arousal index it sounds like listening again...
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#74
RE: Desperate Mum to son with UARS seeking advice
Googling, that seems to be the same as autonomous arousal
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#75
RE: Desperate Mum to son with UARS seeking advice
It depends on what he means by NIV, it could just be a terminology thing. I doubt he means a specific machine.

Krakow does a lot of things other doctors do not. He has created his own line of thinking based on his experiences, other doctors are not taught what he has learned and not all doctors even agree with Krakow. Some of Krakow's findings agree with what CPAP/bilevel users on forums like this have found and other studies are slowly coming out proving his thoughts have some merit. The problem is that mainstream medical moves slow, it will be years/decades before they change the ways bilevel treatment are used for and what doctors/respiratory therapists are taught.

Here in Canada you would think a bilevel machine is made out of uranium or something... You can't even trial them without a Pulmonologist and PSG indicating you need one... There are some reasons for this (possible to over ventilate with wrong settings etc) but used properly they do little different than CPAP.
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#76
RE: Desperate Mum to son with UARS seeking advice
When there is evidence of vegetative or behavioral activation associated with an EEG pattern different from conventional arousal the event was defined as ‘subcortical arousal.

God knows what that means!
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#77
RE: Desperate Mum to son with UARS seeking advice
(02-29-2020, 01:40 PM)BunnyMummy Wrote: Googling, that seems to be the same as autonomous arousal

Interesting. I need to research that more now that I know the term for it. I have a feeling that it is related to the UARS phenomenon. Not in that UARS causes it but rather that UARS gets blamed for it. In my uneducated opinion this is probably one of the issues that "UARS" patients that don't exhibit typical flow limitations, RERA's etc and can't find successful treatment even on bi-level suffer from. Myself being one of those potential people... 

Autonomous nervous system dysfunction is not uncommon. Stress and anxiety all affect it but so can other issues. Chronic fatigue syndrome is an example of primarily fatigue issue but when researching it you find that autonomous nervous system issues are fairly common as are sleep disturbances. There are studies that have confirmed chronic fatigue syndrome is a real issue(something to do with ATP) but they still don't know what causes it (could be multiple causes) and they don't have tests or treatment for it yet that I am aware of.

I'll be honest, because I have been researching and thinking about this a lot with myself I was wondering about something like this even from your early posts. The multi faceted issues your son suffers from are in ways tied to autonomous and immune system issues. I too was going to recommend a neurologist and bring up these points but I wanted to try bilevel first to see if breathing was the main issue as I don't feel as heavily opinionated as the consultant that everything has already been tried. CPAP intolerance is not uncommon even in healthy individuals let alone individuals that suffer from asthma, etc. Even if this is something like chronic fatigue(or better imo to call it what causes chronic fatigue) than treating the symptoms is probably one of the effective treatments, stabilizing and maintaining breathing may help a lot.

This is where the sleep neurologist could really come into play if he has experience with this. Try to learn what you can about these arousals and maybe even do a little research about chronic fatigue etc (I imagine you already have done some). Try to pick the neurologists mind on this stuff and if he has experience with it then maybe we can learn something about this situation which I personally think is a lot more common than many realize (I actually think there are a number of members on here that suffer from this).

Edit: My interpretation of that is that when EEG doesn't present itself in the way that it usually does during a spontaneous arousal they deem it a subcortical arousal. Like I said I didn't know the term of this and haven't researched it yet though.
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#78
RE: Desperate Mum to son with UARS seeking advice
An NIV is a non invasive ventilation any CPAP machine can be classed as an NIV
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#79
RE: Desperate Mum to son with UARS seeking advice
sounds like doc was being a bit coy? NIV same as bilevel? kinda sorta. that lack of precision gives them a lot of wiggle room which you may not want if you're aiming for a certain test and machine. try to have the modality(s) specified or you may end up with something other than expected.
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