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[Diagnosis] A bit lost after WatchPat result
#31
UARS Assistance
Ok thanks

Is there anyway i can change the title of the thread so I can attract those who are well-versed in UARS ?
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#32
RE: A bit lost after WatchPat result
I mean, I don't see a huge amount in terms of either events or flow limits... Do you use a pulse oximeter at night too?


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#33
RE: A bit lost after WatchPat result
No I don't. Just woke up and feel like death. With my BiPAP each night i remember waking up several times a night, whereas without ill remember waking up once a night. Maybe PAP therapy wont work for me. All very disappointing when i thought this was my way out of a lifetime of poor sleep.

Can it take a long time to feel benefit with the right settings and appropriate treatment (which appears to be the case for me according to other members here) or will you feel it immediately ?
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#34
RE: A bit lost after WatchPat result
It depends why you're waking up. There could be a myriad of reasons (not even related to apnea and bipap) but at least we can exclude some things. I would suggest getting a pulse oximeter to check what your sats are doing overnight. Even if the BiPAP shows no events, if your oxygen levels are lowered at night, that's still going to leave you feeling cruddy.

That said, your results were slightly borderline anyway, so it may be that you're chasing this as a cure and there may be something else going on. I get that the NHS has limits in place - it's taken me 10 years to get someone to accept that my central apnea is a real issue and even so, I'm STILL fighting them to get on ASV because I'm having anywhere from 20 to 60 centrals an hour and at least as many again "almost" events that OSCAR labels, and half the time, there are even more that OSCAR doesn't label but still dip my O2. You'd think that having charts that repeatedly show my oxygen levels dipping below the point where my Pulse OX can measure them would spur them into action, but apparently nope. I'm onto three months waiting to be admitted to the ventilation unit in the hope they might not fob me off with CPAP and oxygen and might actually give me ASV.

What exactly are you feeling when you wake at night? Do you just wake up? Are you short of breath? Do you need to pee? It might be worth at least "marking" the times on the BiPAP recording (just lift your mask Or detach the hose for a couple of seconds, to create a noticeable leak, or stop and start the machine). Then you will have the ability to see on your chart what is going on immediately before you wake and figure out if it's related.

Second, consider getting a pulse-ox. It seems unlikely from your watchpat study but if you're consistently desaturating at night, that's going to make you feel like garbage too.

Thirdly, what else do you have going on healthwise? When did your exhaustion start? Do you have any other symptoms like tachycardia, muscle fatigue, exercise intolerance etc?  Has anyone ever offered you a tilt table test? Consider what medication you're taking, if any. I'm sure you've thought of most, if not all, of this already, but it's worth going over again, just in case.

Unfortunately, it may be that apnea/UARS isn't really the problem but that doesn't mean you wouldn't benefit from a proper sleep study - there are any number of sleep disorders that might cause issues, from PLMD or restless legs to difficulty in getting into the deep and restful stages of sleep, and those things can't be excluded without an EEG while you sleep. The fact that this has been going on for so long and is just being dismissed is frustrating as all hell, I imagine.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#35
RE: A bit lost after WatchPat result
(09-18-2021, 04:59 AM)Ratchick Wrote: It depends why you're waking up. There could be a myriad of reasons (not even related to apnea and bipap) but at least we can exclude some things. I would suggest getting a pulse oximeter to check what your sats are doing overnight. Even if the BiPAP shows no events, if your oxygen levels are lowered at night, that's still going to leave you feeling cruddy.

That said, your results were slightly borderline anyway, so it may be that you're chasing this as a cure and there may be something else going on. I get that the NHS has limits in place - it's taken me 10 years to get someone to accept that my central apnea is a real issue and even so, I'm STILL fighting them to get on ASV because I'm having anywhere from 20 to 60 centrals an hour and at least as many again "almost" events that OSCAR labels, and half the time, there are even more that OSCAR doesn't label but still dip my O2. You'd think that having charts that repeatedly show my oxygen levels dipping below the point where my Pulse OX can measure them would spur them into action, but apparently nope. I'm onto three months waiting to be admitted to the ventilation unit in the hope they might not fob me off with CPAP and oxygen and might actually give me ASV.

What exactly are you feeling when you wake at night? Do you just wake up? Are you short of breath? Do you need to pee? It might be worth at least "marking" the times on the BiPAP recording (just lift your mask Or detach the hose for a couple of seconds, to create a noticeable leak, or stop and start the machine). Then you will have the ability to see on your chart what is going on immediately before you wake and figure out if it's related.

Second, consider getting a pulse-ox. It seems unlikely from your watchpat study but if you're consistently desaturating at night, that's going to make you feel like garbage too.

Thirdly, what else do you have going on healthwise? When did your exhaustion start? Do you have any other symptoms like tachycardia, muscle fatigue, exercise intolerance etc?  Has anyone ever offered you a tilt table test? Consider what medication you're taking, if any. I'm sure you've thought of most, if not all, of this already, but it's worth going over again, just in case.

Unfortunately, it may be that apnea/UARS isn't really the problem but that doesn't mean you wouldn't benefit from a proper sleep study - there are any number of sleep disorders that might cause issues, from PLMD or restless legs to difficulty in getting into the deep and restful stages of sleep, and those things can't be excluded without an EEG while you sleep. The fact that this has been going on for so long and is just being dismissed is frustrating as all hell, I imagine.

Ratchick, thank you for your very thoughtful and detailed reply. I'm sorry you've had to deal with such issues with the NHS when you have a clear and diagnosed case of Central Apnea and they wont just give you the ASV. To me that just doesnt make any sense.

I will buy a pulse-ox just to see. Thank you for the recommendation.

When i wake up im not short for breath or anything and i quickly get back to sleep, but i go fiddle with my mask as it seems to slip when im asleep.

Healthwise, my exhaustion started towards the end of primary, start of secondary school. Since then (it could have even been before this but its so long i go now that i cant remember) I have never felt well-rested, and have always woken up at least once a night. Ive been telling my parents since the start that ive been exhausted and unable to concentrate for years, but much like the doctors ive spoken to over the past 15 or so years they thinks its all in my head/im mentally ill and so diagnostic tests have never been carried out until i forked out on the watchpat after every gp i spoke to said that you can only have OSA if you are older and overweight and had never heard of UARS. As the watchpat results show that i wake up over 20 times an hour, and the fact that i wet the bed nightly until i was 16 I have been pretty convinced recently that sleep disordered breathing is at least in part the cause of my issues. Thankfully i dont need to take medication for anything.

I would love to have a sleep test but after being denied anything other than a blood test or SSRIs over the years, i dont see how im going to be given an EEG + sleep test given that the NHS is in the dark ages when it comes to sleep/tiredness (as you are well aware!)

Thank you again for your thoughtful reply and i really hope you get your issues with the NHS resolved!
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#36
RE: A bit lost after WatchPat result
That's just utterly ridiculous but sadly there are still a lot of doctors (not just in the UK but worldwide) that believe a whole lot of patently false things.

It's ridiculous that they've dismissed you for so long without basically trying to fix it with antidepressants. Not everything is caused by depression... in fact, my housemate has both severe depression (among other mental health issues) AND a disorder that makes him exhausted - pernicious anaemia He has to get injections every two months, but the thing is, even THAT can produce a misleading blood test result because they go for the cheaper test which shows TOTAL B12 levels instead of free/available B12 by default. My blood tests look just fine, doesn't mean I'm not so exhausted and weak I can't even sit upright without passing out. Good lord.

Have you always been with the same GPs in that time? If so, I'd perhaps try and find a different GP, or at least find the most sympathetic one and go in, tell them this has been going on since you were in primary school, you had borderline results with the Watchpat, but that 13% of the time it disagrees with a full sleep study, and it shows you you are having a significant number of spontaneous wakes (not all of which you are aware of) and you want to be referred to a sleep clinic for assessment. If they won't refer you, ask why? If they say thin people don't get sleep apnea, point out that not all sleep apnea is obstructive, and even CHILDREN can get OSA| anyway, so if KIDS can be diagnosed with OSA, so can young, slender adults. And even if you DON'T have clinical sleep apnea, that doesn't mean you don't have some OTHER kind of sleep disorder, and after this long, you deserve to be evaluated properly. 1 in 10 kids has OSA. 50% of women in a Swedish study had OSA, irrespective of weight (because so many doctors say it's rare in women, which is also nonsense). Not to mention all the other potential sleep disorders that can also be diagnosed or ruled out by a sleep study. Waking 20 times an hour is just crazy, nobody is going to feel great like that. It's really tough - trying to advocate for yourself can be incredibly hard and feel like you're bashing your head against a brick wall.

Regardless of the cause, just dismissing it shouldn't be an option. They should be dismissing it as "depression" or some such thing without excluding other issues first... and even if it WAS related to mental health, then the person should STILL be treated with the appropriate therapies like CBT-i, medications, etc. But they shouldn't be a first choice.

One other thought - would you be financially in a position to do a private sleep study? If so, that might be the way forwards. Even if you can only go to them for the study and diagnosis, you can then, at least, present that full study and diagnosis to your NHS GP and say ok now treat me.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#37
RE: A bit lost after WatchPat result
So I have lived across different constituent parts of the UK with different GPs and its always been the same response: "Take Prozac its stimulating". Also while I'd like to say that ive just been very unlucky, this is not the case. I'm in a Discord group chat with other Brits and they've been told the same thing their entire lives. They have all had to seek treatment outside the NHS, whether that be private WatchPats, purchasing their own PAP device, or in many cases paying for MMA Surgery outside of the UK. Standard practice for GPs in the UK for young people (unless overweight) can not have OSA, and not one has heard of UARS.

I was finally able to convince a GP to refer me for a home NHS sleep test 4 months ago, but im still waiting for it. My thoughtis that once i have it, if my AHI is below 5 they'll dispense with me and that will be the end of any inlab test, and if its above 5 they'll just fob me off with a CPAP. I was considering goiing private but ive also paid more than 1000 so far on everything and I loathe to spend 1000s more on a private inlab + flights to get it (Im in N.I atm), but needs must i suppose.
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#38
RE: A bit lost after WatchPat result
Oh, I believe you - finding a decent GP (or even a decent consultant) is like looking for hens' teeth. And battling the bad information is just ugh. So frustrating. Unfortunately, it seems as though they have similar problems in the US as well with finding decent sleep doctors, too. A worldwide problem, it seems. I had to rewrite my last reply several times to edit out the tangential rants about the fact that it took 14 years to be diagnosed with a disease that affects 10% of women and the delay has left me in constant severe pain with nerve and organ damage and massive scarring/adhesions. All because I was... ding ding ding! Too young. Only in my case, I was told also that I was fat and should lose weight and I would feel better (as well as treat my depression) - even though my BMI was 20. I mean... okay, doc(s). LOL Whatever you say.

I'm sorry I couldn't offer you any more advice, but definitely let us know if you get that NHS study (or decide to get a private sleep study).


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#39
RE: A bit lost after WatchPat result
Hi all,

Since going on BiPAP my nocturia has vanished, and i think i no longer toss and turn (i no longer wake up with my mattress cover ripped off as i had done since forever) so my sleep is being improved to some degree by therapy. However, I'm still feeling very tired and my REM period of sleep (lets say after 4-5 hours of sleep) is marked by many awakenings (i usually wake up several times during the second half of sleep). As my previous oscar data suggests that my therapy is effective, could it be that my body is waking up as it was used to doing so over the past two decades?
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#40
RE: A bit lost after WatchPat result
Hi all,

Can anything be drawn from a narrower/tighter flow rate graph. I felt better a couple of weeks ago but this improvement was short-lived despite no changes in pressure, sleep hygiene or otherwise. What I did notice from my oscar data was that the flow rate was much narrower than usual. I've attached it below for comparison with last night's data (I feel awful today).


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