Not meant to be disrespectful...just meant that Canada's national health plan is very similar to UK's national health plan and Canadian patients have access to their records.
Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
I meant to put an emoji, but the doorbell rang!






Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Home sleep studies can't really do a good job differentiating between sleep/wake/junk central apneas and real central apneas when they are type 3 sleep studies because a type 3 sleep study doesn't measure sleep status at all.
A type 2 home sleep study would need to be done. Type 2 home sleep studies have sensors to measure brain waves and establish for sure if someone was asleep or not.
Unless someone reported to me that they don't think they slept well wearing the device I wouldn't be real quick to poo poo the diagnosis or reported central apneas as SWJ centrals and thus of no real seriousness.
SWJ centrals typically would happen maybe at sleep onset and then not be present in any significant numbers the rest of the night...again we need to know for sure or not if sleep was attained. So a lot depends on how many centrals were flagged and when....hence the need for the sleep study report details.
The in hospital sleep studies are type 2 sleep studies but there are type 2 home sleep studies available but they are usually not commonly the first step.
And we don't know which bilevel machine the first doctor was initially willing to prescribe...was it a regular common bilevel machine or ASV or some other bilevel designed for central apneas.
So was there mainly central apneas reported or a mixture of obstructive apneas and centrals? Again...sleep study report would help answer that question.
A type 2 home sleep study would need to be done. Type 2 home sleep studies have sensors to measure brain waves and establish for sure if someone was asleep or not.
Unless someone reported to me that they don't think they slept well wearing the device I wouldn't be real quick to poo poo the diagnosis or reported central apneas as SWJ centrals and thus of no real seriousness.
SWJ centrals typically would happen maybe at sleep onset and then not be present in any significant numbers the rest of the night...again we need to know for sure or not if sleep was attained. So a lot depends on how many centrals were flagged and when....hence the need for the sleep study report details.
The in hospital sleep studies are type 2 sleep studies but there are type 2 home sleep studies available but they are usually not commonly the first step.
And we don't know which bilevel machine the first doctor was initially willing to prescribe...was it a regular common bilevel machine or ASV or some other bilevel designed for central apneas.
So was there mainly central apneas reported or a mixture of obstructive apneas and centrals? Again...sleep study report would help answer that question.
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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
I don't know of any NHS home study which involves brain sensors. I was told that for more they would require an in lab if they did not get conclusive results from my home test, but because of COVID, it would be a very long time. Probably 6 months or so. It's not that I'm opposed to doing that, it's just it's way too long for me considering the ssverirt. No place is going to get me in lab anytime soon due to COVID.Pugsy wrote: ↑Sat Jan 09, 2021 7:23 pmHome sleep studies can't really do a good job differentiating between sleep/wake/junk central apneas and real central apneas when they are type 3 sleep studies because a type 3 sleep study doesn't measure sleep status at all.
A type 2 home sleep study would need to be done. Type 2 home sleep studies have sensors to measure brain waves and establish for sure if someone was asleep or not.
Unless someone reported to me that they don't think they slept well wearing the device I wouldn't be real quick to poo poo the diagnosis or reported central apneas as SWJ centrals and thus of no real seriousness.
SWJ centrals typically would happen maybe at sleep onset and then not be present in any significant numbers the rest of the night...again we need to know for sure or not if sleep was attained. So a lot depends on how many centrals were flagged and when....hence the need for the sleep study report details.
The in hospital sleep studies are type 2 sleep studies but there are type 2 home sleep studies available but they are usually not commonly the first step.
And we don't know which bilevel machine the first doctor was initially willing to prescribe...was it a regular common bilevel machine or ASV or some other bilevel designed for central apneas.
So was there mainly central apneas reported or a mixture of obstructive apneas and centrals? Again...sleep study report would help answer that question.
The doc said on the letter he would trial me BiPAP because they didn't have ASV, so he meant standard BiPAP
He said just centrals with "very few" obstructions. My AHI for the rest of the night was 1.8AHI (yet I still woke up to pee several times). Maybe UARS too?
I will request the full sleep study and post it here. Hopefully it will be quick but I think I may habe to request formally because they really don't like giving it to me.
Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
we need a "doorbell" emoji!



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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
ASV is FAR from a standard BiPap....BTW BiPap is a marketing term for only Respironics machines which do bilevel therapies and there are several models of bilevel machines.CentralApneaUser909 wrote: ↑Sat Jan 09, 2021 8:41 pmThe doc said on the letter he would trial me BiPAP because they didn't have ASV, so he meant standard BiPAP
ResMed makes bilevel machines and calls them AirCurve 10 models...they are bilevel but they are not bipaps because they aren't Respironics brand.
Now I know that bipap has sort of become a generic term but I prefer to use correct terminology whenever possible because not all bilevel/bipaps have the same setting options. They can differ widely between brands and models. To avoid confusion I prefer to use correct terminology when talking about machines.
The setting choices on a Respironics bipap model might not be the same as the setting choices for a ResMed bilevel machine.
Here's an example of all the various ResMed bilevel machines....all the models that have AirCurve 10 in the model name are bilevel machines. All do different things for different reasons. Scroll down to see the bilevel models
https://www.resmed.com/epn/en/consumer/ ... vices.html
Respironics has a similar set of bilevel models called "BiPap" but they all do different things just like the ResMed.
I don't have a link handy for a quick comparison of those machines.
For Central apnea patients...a standard bilevel machine is NOT usually the best solution.
They can't force you to breathe like the ASV model.
I use a ResMed AirCurve 10 VAuto....it is a bilevel machine but it doesn't do a darn thing to treat central apnea. It simply can't.
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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Yep I'm aware ASV isn't standard BiPAP. Sorry I should.have been clearerPugsy wrote: ↑Sat Jan 09, 2021 9:11 pmASV is FAR from a standard BiPap....BTW BiPap is a marketing term for only Respironics machines which do bilevel therapies and there are several models of bilevel machines.CentralApneaUser909 wrote: ↑Sat Jan 09, 2021 8:41 pmThe doc said on the letter he would trial me BiPAP because they didn't have ASV, so he meant standard BiPAP
ResMed makes bilevel machines and calls them AirCurve 10 models...they are bilevel but they are not bipaps because they aren't Respironics brand.
Now I know that bipap has sort of become a generic term but I prefer to use correct terminology whenever possible because not all bilevel/bipaps have the same setting options. They can differ widely between brands and models. To avoid confusion I prefer to use correct terminology when talking about machines.
The setting choices on a Respironics bipap model might not be the same as the setting choices for a ResMed bilevel machine.
Here's an example of all the various ResMed bilevel machines....all the models that have AirCurve 10 in the model name are bilevel machines. All do different things for different reasons. Scroll down to see the bilevel models
https://www.resmed.com/epn/en/consumer/ ... vices.html
Respironics has a similar set of bilevel models called "BiPap" but they all do different things just like the ResMed.
I don't have a link handy for a quick comparison of those machines.
For Central apnea patients...a standard bilevel machine is NOT usually the best solution.
They can't force you to breathe like the ASV model.
I use a ResMed AirCurve 10 VAuto....it is a bilevel machine but it doesn't do a darn thing to treat central apnea. It simply can't.
I meant that my consultant said they had no ASV available, so because of that, he would give me bipap. He didn't specify a specific kind, he just said stsndars BipAP therapy over the phone. The letter just says BiPAP it's not specific unfortunately.
So ASV would be best, but it would be a while before I could get that. I will try my best for this.
Is there another machine that at least has a shot at reducing my Centrals? I have read that VPAP and APAP can sometimes help centrals.
Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Is it possible? Long shot maybe..... if your diagnosis is indeed central apnea and not complex sleep apnea (both obstructive and central apneas are present in large numbers).CentralApneaUser909 wrote: ↑Sat Jan 09, 2021 9:16 pmIs there another machine that at least has a shot at reducing my Centrals? I have read that VPAP and APAP can sometimes help centrals.
Again this is where we need to see the actual sleep report. Just how many centrals and over how long??? 25 in the first hour of sleep and nothing later....5 in the first hour and every hour after that???? 10 the first hour and every hour after that???
When bilevel machines help with central apneas it is usually when people develop central sleep apnea as a by product of cpap therapy for obstructive sleep apnea and they didn't have a problem with centrals prior to starting cpap.
Central apnea....you simply don't breathe...don't inhale. Hold your breath for 10 seconds...that's essentially a 10 second central apnea.
No air is moving but the airway is open.
Bilevel machines (the standard kind) can't force you to breathe if you don't try....it can't increase the pressure fast enough or high enough to force a breath.
ASV bilevel machines give you a big burst of pressure for a couple of breaths to jump start your breathing...it essentially ventilates you and forces you to breathe. That's why they are called NIV...non invasive ventilators. They make you breathe.
Standard bilevel can't do what is needed to force you to breathe.
So a lot of factors...why the centrals in the first place (medication side effects sometimes, or old head injury or whatever)...and then how many and when are they occurring and how do they impact your oxygen levels.
Now if you can get your NHS to at least let you try a standard bilevel if there is no ASV available and having an in lab sleep study is going to be hard to get....it's probably worth at least trying whatever they can give you to try but obviously it's not ideal. You don't really have anything to lose and there is a very remote chance it might just help.
If you were a family member of mine though....I would be finding you an ASV machine.


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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
It was 25 in the first hour, then very little obstruction after that. If I recall correctly, like 1.8 AHI every hour after no centrals.. I will ask them for my report so I can look at it.Pugsy wrote: ↑Sat Jan 09, 2021 9:53 pmIs it possible? Long shot maybe..... if your diagnosis is indeed central apnea and not complex sleep apnea (both obstructive and central apneas are present in large numbers).CentralApneaUser909 wrote: ↑Sat Jan 09, 2021 9:16 pmIs there another machine that at least has a shot at reducing my Centrals? I have read that VPAP and APAP can sometimes help centrals.
Again this is where we need to see the actual sleep report. Just how many centrals and over how long??? 25 in the first hour of sleep and nothing later....5 in the first hour and every hour after that???? 10 the first hour and every hour after that???
When bilevel machines help with central apneas it is usually when people develop central sleep apnea as a by product of cpap therapy for obstructive sleep apnea and they didn't have a problem with centrals prior to starting cpap.
Central apnea....you simply don't breathe...don't inhale. Hold your breath for 10 seconds...that's essentially a 10 second central apnea.
No air is moving but the airway is open.
Bilevel machines (the standard kind) can't force you to breathe if you don't try....it can't increase the pressure fast enough or high enough to force a breath.
ASV bilevel machines give you a big burst of pressure for a couple of breaths to jump start your breathing...it essentially ventilates you and forces you to breathe. That's why they are called NIV...non invasive ventilators. They make you breathe.
Standard bilevel can't do what is needed to force you to breathe.
So a lot of factors...why the centrals in the first place (medication side effects sometimes, or old head injury or whatever)...and then how many and when are they occurring and how do they impact your oxygen levels.
Now if you can get your NHS to at least let you try a standard bilevel if there is no ASV available and having an in lab sleep study is going to be hard to get....it's probably worth at least trying whatever they can give you to try but obviously it's not ideal. You don't really have anything to lose and there is a very remote chance it might just help.
If you were a family member of mine though....I would be finding you an ASV machine.![]()
![]()
I have nothing to lose you are right, and there's a small chance of hope, so I feel I have to take it.
"If you were a family member of mine though....I would be finding you an ASV machine.


I'm certain this is the mentality the doctor had too

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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Hello again CentralApneaUser909,
A couple of points I was going to make but was getting tired – you and I are six hours ahead of Missouri, which is in Central Standard Time.
And I agree with everything Pugsy says above. She covers all the relevant points so clearly and so well.
And we keep coming back to: we don't know quite what is in your first sleep study, so we don't know which machine to suggest.
(And by 'we' I mean both the people on this forum and the two UK doctors – and related sleep-medicine staff – that you have seen.)
You have been saying, in effect, "Try me with a range of high-end machines – try me with A, try me with B, try me with C – see which one of them works best for me."
And the decision makers in the NHS are unwilling to do that. Their preferred option is to have you do a sleep lab. That is what their training sez to do. Plus, there may be some small but real risk in having you connected to the 'wrong' machine – especially at home, on your own, with no expert staff to get you out of respiratory distress – if that should happen.
However, you may or may not know that the overnight stay in a sleep lab can be used to not only do a sleep study ...
.. but also it can be used to, in effect, 'try you out' on different machines. The equipment at the sleep lab can be set up to mimic this or that high-end machine.
Much the same way as a keyboard synthesizer can be made to sound like a piano, sound like a trumpet, sound like a flute. You get the idea?
And I didn't get round to telling you that there are a number of sleep labs in the private sector in the UK. I know of at least two in London, And there are a number of them in the home counties and along the south coast.
Fee for a night in a UK sleep lab, plus report – about £1400.
You need to be referred by your GP. Probably best to phone first to get precise availability. But you almost certainly would not have to wait six months.
It's an option. And the report from the private sleep lab would go to your GP. Who could then negotiate for the provision of a machine from the second hospital – and/ or who would have legal cover for writing a scrip him- or herself, if the second hospital took a long time to make that 'individual funding request'. With that scrip, you would be free to buy an ASV.
A couple of points I was going to make but was getting tired – you and I are six hours ahead of Missouri, which is in Central Standard Time.

And I agree with everything Pugsy says above. She covers all the relevant points so clearly and so well.

And we keep coming back to: we don't know quite what is in your first sleep study, so we don't know which machine to suggest.
(And by 'we' I mean both the people on this forum and the two UK doctors – and related sleep-medicine staff – that you have seen.)
You have been saying, in effect, "Try me with a range of high-end machines – try me with A, try me with B, try me with C – see which one of them works best for me."
And the decision makers in the NHS are unwilling to do that. Their preferred option is to have you do a sleep lab. That is what their training sez to do. Plus, there may be some small but real risk in having you connected to the 'wrong' machine – especially at home, on your own, with no expert staff to get you out of respiratory distress – if that should happen.
However, you may or may not know that the overnight stay in a sleep lab can be used to not only do a sleep study ...
.. but also it can be used to, in effect, 'try you out' on different machines. The equipment at the sleep lab can be set up to mimic this or that high-end machine.
Much the same way as a keyboard synthesizer can be made to sound like a piano, sound like a trumpet, sound like a flute. You get the idea?
And I didn't get round to telling you that there are a number of sleep labs in the private sector in the UK. I know of at least two in London, And there are a number of them in the home counties and along the south coast.
Fee for a night in a UK sleep lab, plus report – about £1400.
You need to be referred by your GP. Probably best to phone first to get precise availability. But you almost certainly would not have to wait six months.
It's an option. And the report from the private sleep lab would go to your GP. Who could then negotiate for the provision of a machine from the second hospital – and/ or who would have legal cover for writing a scrip him- or herself, if the second hospital took a long time to make that 'individual funding request'. With that scrip, you would be free to buy an ASV.
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Last edited by rick blaine on Sun Jan 10, 2021 8:21 am, edited 1 time in total.
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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Hello again, and thank you for responding! No worries about being tired, I think we all know about the importance of sleeprick blaine wrote: ↑Sun Jan 10, 2021 8:01 amHello again CentraApneaUser909,
A couple of points I was going to make but was getting tired – you and I are six hours ahead of Missouri, which is in Central Standard Time.![]()
And I agree with everything Pugsy says above. She covers all the relevant points so clearly and well.
And we keep coming back to: we don't know quite what is in your first sleep study, so we don't know which machine to suggest.
(And by 'we' I mean both the people on this forum and the two UK doctors – and related sleep-medicine staff – that you have seen.)
You have been saying, in effect, "Try me with a range of high-end machines – try me with A, try me with B, try me with C – see which one of them works best for me."
And the decision makers in the NHS are unwilling to do that. Their preferred option is to have you do a sleep lab. That is what their training sez to do. Plus, there may be some small but real risk in having you connected to the 'wrong' machine – especially at home, on your own, with no expert staff to get you out of respiratory distress – if that should happen.
However, you may or may not know that the overnight stay in a sleep lab can be used to not only do a sleep study ...
.. but also it can be used to, in effect, 'try you out' on different machines. The equipment at the sleep lab can be set up to mimic this or that high-end machine.
Much the same way as a keyboard synthesizer can be made to sound like a piano, sound like a trumpet, sound like a flute. You get the idea?
And I didn't get round to telling you that there are a number of sleep labs in the private sector in the UK. I know of at least two in London, And there are a number of them in the home counties and along the south coast.
Fee for a night in a UK sleep lab, plus report – about £1400.
You need to be referred by your GP. Probably best to phone first to get precise availability. But you almost certainly would not have to wait six months.
It's an option. And the report from the private sleep lab would go to your GP. Who could then negotiate for the provision of a machine from the second hospital – and/ or who would have legal cover for writing a scrip him- or herself, if the second hospital continued (as you see it) to drag its feet.

That is a fair bit costly, but it makes sense as it is private. Do you know if those private practices are still doing in labs? I know of one in London that was recommended for UARS, and their website says that they have cancelled all face to face appointments and would be issuing home trsts due to COVID.
Another thing I'm curious about and would like your insight into, is what if I have UARS? Let's say they were not true centrals in the first hour. I know that my AHI was low for the rest of the night, and in spite of this, I still woke up several times during the night (as I usually do). For people my age group, UARS tends to be more common than apnea.
I am wondering whether I could determine UARS if I looked at my sleep report? To my knowledge, sleep reports don't measure for RERAs here. And the hospitals I went to certainly do not recognize UARS (second consultant said it didn't exist to me).
It would be intriguing that if I had UARS and not central. SOME clinics do recognize UARS I've been told.
If I get my sleep report from the NHS, do you think if I posted it here, you or someone else could tell me whether UARS is likely? I am assuming that there Is a way to spot RERAs on the graph.
Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
There is a situation where a person has just what is called sleep onset centrals...happens between the transition from awake to asleep.
These aren't the same thing as sleep/wake/junk centrals which are really false positive centrals because you aren't ever really asleep.
Sleep onset centrals are normal to have on occasion (a handful maybe)....and they don't normally cause a problem and we don't do anything about them.
For a few unlucky people they are so numerous that they do cause a problem though. They either keep bouncing a person out of sleep so solid good quality sleep is never really obtained or they can even sometimes mess with oxygen levels which of course is a real problem.
For a doctor to utter the words ASV just from the first hour recording of 25 centrals and nothing really after that first hour...it must have caused a significant problem ...I would assume.
When it comes to my helping people I really don't like assuming anything unless I have absolutely no choice. This is why that sleep report in its totality is really needed to see just how bad things were or weren't.
All I do is examine the facts and try to explain the options...and yes, my hands aren't tied like RickBlaine's hands are tied.
Going the DIY route is an option....and I admit not the ideal option but it is an option.
In the meantime, while awaiting at least the full sleep report of a type 3 home sleep study that doesn't even have the ability to know if for sure a person was asleep, we can ask some basic questions that would help.
Do you take any medications of any kind? If so, what? Even any OTC meds?
Do you take or use any recreational drugs? You don't have to answer this publicly if you don't want to ...just send me a PM.
Do you have any other health issues going on?
Have you any history of head injury?
Any problems with lung issues of any sort or history of lung issues?
Tell me again exactly what symptoms you have been having that caused the need for the sleep study?
I see you now have questions about UARS and RERAs. It would be impossible to spot RERAs or UARS on a type 3 sleep study because to document arousals which is what a RERA is (and it has to be respiratory related arousal vs a spontaneous or no known cause) we have to first and foremost know sleep status or sleep stages and the type 3 study simply doesn't do it.
UARS is really hard to document on a sleep study without a Pes device being used...and even here in the US most sleep labs don't do that procedure. Usually UARS is more of a rule out diagnosis. It's just now starting to be looked at in more depth with more research going on behind it.
These aren't the same thing as sleep/wake/junk centrals which are really false positive centrals because you aren't ever really asleep.
Sleep onset centrals are normal to have on occasion (a handful maybe)....and they don't normally cause a problem and we don't do anything about them.
For a few unlucky people they are so numerous that they do cause a problem though. They either keep bouncing a person out of sleep so solid good quality sleep is never really obtained or they can even sometimes mess with oxygen levels which of course is a real problem.
For a doctor to utter the words ASV just from the first hour recording of 25 centrals and nothing really after that first hour...it must have caused a significant problem ...I would assume.
When it comes to my helping people I really don't like assuming anything unless I have absolutely no choice. This is why that sleep report in its totality is really needed to see just how bad things were or weren't.
All I do is examine the facts and try to explain the options...and yes, my hands aren't tied like RickBlaine's hands are tied.
Going the DIY route is an option....and I admit not the ideal option but it is an option.
In the meantime, while awaiting at least the full sleep report of a type 3 home sleep study that doesn't even have the ability to know if for sure a person was asleep, we can ask some basic questions that would help.
Do you take any medications of any kind? If so, what? Even any OTC meds?
Do you take or use any recreational drugs? You don't have to answer this publicly if you don't want to ...just send me a PM.
Do you have any other health issues going on?
Have you any history of head injury?
Any problems with lung issues of any sort or history of lung issues?
Tell me again exactly what symptoms you have been having that caused the need for the sleep study?
I see you now have questions about UARS and RERAs. It would be impossible to spot RERAs or UARS on a type 3 sleep study because to document arousals which is what a RERA is (and it has to be respiratory related arousal vs a spontaneous or no known cause) we have to first and foremost know sleep status or sleep stages and the type 3 study simply doesn't do it.
UARS is really hard to document on a sleep study without a Pes device being used...and even here in the US most sleep labs don't do that procedure. Usually UARS is more of a rule out diagnosis. It's just now starting to be looked at in more depth with more research going on behind it.
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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
Pugsy wrote: ↑Sun Jan 10, 2021 8:42 amThere is a situation where a person has just what is called sleep onset centrals...happens between the transition from awake to asleep.
These aren't the same thing as sleep/wake/junk centrals which are really false positive centrals because you aren't ever really asleep.
Sleep onset centrals are normal to have on occasion (a handful maybe)....and they don't normally cause a problem and we don't do anything about them.
For a few unlucky people they are so numerous that they do cause a problem though. They either keep bouncing a person out of sleep so solid good quality sleep is never really obtained or they can even sometimes mess with oxygen levels which of course is a real problem.
For a doctor to utter the words ASV just from the first hour recording of 25 centrals and nothing really after that first hour...it must have caused a significant problem ...I would assume.
When it comes to my helping people I really don't like assuming anything unless I have absolutely no choice. This is why that sleep report in its totality is really needed to see just how bad things were or weren't.
All I do is examine the facts and try to explain the options...and yes, my hands aren't tied like RickBlaine's hands are tied.
Going the DIY route is an option....and I admit not the ideal option but it is an option.
In the meantime, while awaiting at least the full sleep report of a type 3 home sleep study that doesn't even have the ability to know if for sure a person was asleep, we can ask some basic questions that would help.
Do you take any medications of any kind? If so, what? Even any OTC meds?
Do you take or use any recreational drugs? You don't have to answer this publicly if you don't want to ...just send me a PM.
Do you have any other health issues going on?
Have you any history of head injury?
Any problems with lung issues of any sort or history of lung issues?
Tell me again exactly what symptoms you have been having that caused the need for the sleep study?
I see you now have questions about UARS and RERAs. It would be impossible to spot RERAs or UARS on a type 3 sleep study because to document arousals which is what a RERA is (and it has to be respiratory related arousal vs a spontaneous or no known cause) we have to first and foremost know sleep status or sleep stages and the type 3 study simply doesn't do it.
UARS is really hard to document on a sleep study without a Pes device being used...and even here in the US most sleep labs don't do that procedure. Usually UARS is more of a rule out diagnosis. It's just now starting to be looked at in more depth with more research going on behind it.
I think its possible its Sleep Onset Central. I'm open to this. The thing is, I still wake up to pee several times throughout the night, so even after that initial period, I'm still waking up.
My oxygen levels were fine, avg dip of 1%.
Yes it caused a significant problem. I wake up so many times during the night. Usually I can get straight back to sleep, but I feel lethargic, tired, etc. Its affected my life very negatively, hence why I'm so desperate for treatment.
I am strongly considering the DIY route for sure.
My answer to your questions:
1) I don't take any meds of any kind
2) No OTC meds
3) No recreational drugs either
4) No other health issues atm
5) Head Injury... once when I was 8 years old, I needed stitches in my head. But my sleep problems didn't start until a few years ago
6) No lung issues
7) So my symptoms, as I described in my opening post, waking up to pee 6-7x a night, tiredness, fatigue, brain fog. The peeing is highly annoying. Its always fragmented sleep..I got tested for diabetes. Nothing. And also prostate tested. It.was fine. After that, my GP referred me for a study as apnea can cause nighttime urination
As for UARS, that is disappointing to hear. I was hopeful that a home test could detect RERAs.
I thought some home tests do that? The WatchPAT study is a home sleep test which gives you the RDI number, so I assume from that, they must test RERAs. The actual test equipment from a WatchPat isn't any different to most home tests from what I've been told. It's just the way the results are scored. They include RERAs and thus RDI, whereas other tests don't.
This brings me to UARS and the NHS. Some UK clinics recognize and treat UARS, though not many. This has me curious, because it means they must.be diagnosing UARS based on home tests? So by definition, that would mean they are looking at RERAs in home tests?
The reason I suspect UARS is that I'm young, healthy, slim and my AHI was low for the rest of the night. My symptoms align with UARS and UARS is usually high RDI but low AHI
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Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
[Sorry. Double post. My bad.]
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Last edited by rick blaine on Sun Jan 10, 2021 9:17 am, edited 2 times in total.
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- Posts: 616
- Joined: Tue Dec 15, 2015 7:30 am
Re: Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)
CentralApneaUser909 wrote:
"If I get my sleep report from the NHS, do you think if I posted it here, you or someone else could tell me whether UARS is likely? I am assuming that there Is a way to spot RERAs on the graph."
Well, first, I think you should get a copy of your sleep study and any letters that go with it, even if no attempt was made to diagnose UARS from it. It's what I and the others on this forum have been saying for several posts.
Get a copy of your sleep study. It may not tell us everything – but it would most likely tell us more than what we know now.
Second, I for one don't know enough about UARS, so I can't and won't offer an opinion.
What I do know is that, in terms of diagnosis, and what can and should be treated, the more important question is: what's happening to O2 sats?
I don't know what happens in general to O2 levels during suspected UARS. We do know in general what happens to O2 levels in Central apneas.
Which brings us back to your sleep-study results.
I thought overnight as to how I put it above. You don't need to make a written, formal subject access request to get a copy of your report. It should be enough that you ask it. And anybody who tries to fob you off is breaking the law.
The main reason you might say to people 'Or do I have to make a subject access request?' is to remind them them that it IS the law.
Actually putting together the paperwork, and enclosing your passport, etc, is the back-up legal process that, hopefully, you never have to use.
"If I get my sleep report from the NHS, do you think if I posted it here, you or someone else could tell me whether UARS is likely? I am assuming that there Is a way to spot RERAs on the graph."
Well, first, I think you should get a copy of your sleep study and any letters that go with it, even if no attempt was made to diagnose UARS from it. It's what I and the others on this forum have been saying for several posts.
Get a copy of your sleep study. It may not tell us everything – but it would most likely tell us more than what we know now.
Second, I for one don't know enough about UARS, so I can't and won't offer an opinion.
What I do know is that, in terms of diagnosis, and what can and should be treated, the more important question is: what's happening to O2 sats?
I don't know what happens in general to O2 levels during suspected UARS. We do know in general what happens to O2 levels in Central apneas.
Which brings us back to your sleep-study results.
I thought overnight as to how I put it above. You don't need to make a written, formal subject access request to get a copy of your report. It should be enough that you ask it. And anybody who tries to fob you off is breaking the law.
The main reason you might say to people 'Or do I have to make a subject access request?' is to remind them them that it IS the law.
Actually putting together the paperwork, and enclosing your passport, etc, is the back-up legal process that, hopefully, you never have to use.
_________________
Mask: ResMed AirFit™ F20 Full Face CPAP Mask with Headgear |
Humidifier: DreamStation Heated Humidifier |