HELP!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
frodo763
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HELP!

Post by frodo763 » Fri May 18, 2018 8:50 am

Hello everyone
This is my first message here and I'm wondering if there is anyone out there who is able to help me figure out what's going on and if my data that sleepyhead is showing is something to worry about. I was referred by my GP last September for a sleep study but found that the healthcare system in the UK is notoriously slow(I still haven't heard anything) and I decided it was best to pay privately for a home sleep study. The sleep study showed that my overall AHI was only 7 however this was severe in the supine position where it was found to be 39.3. I started Cpap last weekend and have found it fairly tolerable so far on the nights that I have used it, and was actually quite excited to use the machine. I am using a PR System One Autopap with a nasal mask as I felt the Auto machine would be better as I haven't yet had the opportunity to have my pressure titrated by a professional. My minimum pressure is 6.5 and the maximum 10.5. Looking at my results on sleepyhead has made me rather concerned! Firstly, the AHI seems pretty high for someone who only had 7 AHI before cpap. For the four nights that I have used the machine the AHI has been 5.39, 6.64, 5.49 and 3.96. Obviously being new to Cpap I have no idea if this is normal or not but it just seems to me that it isn't really working yet as my numbers are still high and I'm still pretty tired.
The thing that has worried me the most is that sleepyhead is showing that I am having fairly frequent clear airway events and on Sunday night I had two separate incidents of Periodic Breathing resulting in PB 2.78%. Neither of these things showed on my home sleep study. Naturally, not knowing anything about this I turned to the internet for information and it has scared the hell out of me, suggesting that I may have issues with my brain or heart that are extremely serious. I am 26 and do not have a history of Cardiac, lung or nervous system problems but have struggled with quite severe health anxiety and depression for many years and I am also overweight.

I have attached some pictures so that those of you who know far more than I do can have a quick look and tell me if I should be concerned about the Centrals or Periodic Breathing. As the graphs may show there are a few gaps in my therapy mostly due to me inadvertently removing the mask while sleeping. I have had no major mask leaks. Thank you in advance to everyone for all of the support and advice you give others on this forum.
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Pugsy
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Re: HELP!

Post by Pugsy » Fri May 18, 2018 9:06 am

Periodic Breathing by definition is just a waxing and waning of the air flow. People start worrying when the Periodic Breathing starts to look like a lot of Cheyne Stokes Respiration which is one form of Periodic Breathing but not the only form.
Your Periodic Breathing looks nothing like real Cheyne Stokes Respiration so I wouldn't worry about it at all.
This is what real Cheyne Stokes Respiration looks like and even if someone has a little bit of CSR it isn't usually that big of a deal.
Image

Image

The Clear Airway/Central apnea event flagging...first of all an occasional central apnea that is real is actually normal. Like it is normal to have a central apnea when transitioning from awake to asleep. We call those centrals sleep onset centrals. Not a big deal and normal and we don't worry about them unless we see an unusually large number of centrals or they are causing desats or they keep bouncing a person out of sleep and not letting them progress in terms of sleep stages.

The central event cluster that you sort of zoomed in on looks more like not real centrals to me. They look more like awake or semi awake breathing irregularities getting flagged by mistake. These machines don't have any way to know if a person is awake or asleep.
They only measure air flow and our awake/semi awake breathing is a lot more irregular than our asleep breathing and often the machine will mistake these awake irregularities as some sort of apnea event. We call them SWJ or sleep/wake/junk.
If you want to learn more on how to determine real vs SWJ you might watch the video here....last one on the bottom of the page.
http://freecpapadvice.com/sleepyhead-free-software

Even if they were all real though...we don't worry about them unless in much large numbers than you are seeing here.

Oh...please review this thread for how what to post when you share those reports. You have omitted some stuff that would be useful.
viewtopic/t158560/How-to-post-images-for-review.html

It's not unusual for newbies to cpap therapy to have a lot of SWJ flagged events simply because all this therapy is new and we have the potential to have more awake time with the mask and machine on.

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Julie
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Re: HELP!

Post by Julie » Fri May 18, 2018 9:15 am

I personally would be doing everything I could do just not sleep on your back... there are various ways to deal with it and it seems very likely you would not need Cpap if you could master them. Put something behind you (a stuffed backpack, foam wedges, etc) to keep from flipping while asleep. Your test result of 7 is below normal by most standards for needing Cpap in any case.

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Pugsy
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Re: HELP!

Post by Pugsy » Fri May 18, 2018 9:22 am

While 7 AHI when not on your back is below what some medical professionals would advise cpap use the 39 when on your back is well above the cut off line.

It's not always so easy to stay off one's back though. I have a friend who can sleep on her back with a back pack full of tennis balls being worn.

Did you get a break down into what your oxygen levels went to when on your side vs when on your back?
The AHI of 7 on your side might still have some ugly desats happening and I would want to make sure it wasn't happening before I went down the road of doing whatever to stay off my back instead of cpap if it was me.
My OSA in non REM was barely diagnostic in terms of AHI numbers but the oxygen levels dropped to low 70s. I wasn't having very many events in non REM but they must have been fairly long in duration because the oxygen level drops were huge.
You don't have to have a high AHI count to have bad desats.

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chunkyfrog
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Re: HELP!

Post by chunkyfrog » Fri May 18, 2018 9:56 am

Cpap allows me to sleep in various positions.
No one position works all night for me.

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frodo763
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Re: HELP!

Post by frodo763 » Fri May 18, 2018 11:02 am

Thank you all for such quick replies!
Julie- Unfortunately I have already tried and failed positional therapy. I tried three tennis balls sown onto a t-shirt, backpack full of clothes, even stuffing an entire Harry Potter book collection inside a lose fitting pajama top to stop me rolling over. I recorded myself sleeping on my laptop and all that would happen is I would either role over and sleep on the tennis balls or in the case of the backpack and everything else in a deep sleep state I would actually remove the items without realising it, then role onto my back and fall asleep again. If you have any other suggestions then I'd be happy to try them out.

Pugsy- The report I received only showed my minimum Sp02 was 79% and this was while on my back, unfortunately it didn't give any information for lowest desat while sleeping on my side but it did mention that for the 402 minutes that I was in bed my oxygen levels went under 95% for 175.5 minutes, under 90% for 2.5 minutes and under 85% for 0.5 minutes. I am definitely a loud snorer which worsens on my back.

Despite my best efforts I'm not sure staying off my back is really an option and I'm perfectly fine about using Cpap though as my original post shows I am still quite concerned about the sudden appearance of Clear airway events that may or may not be central apneas, and the periodic breathing(mostly due to google telling me I have heart problems). Is it normal to have so many CA's that seemingly appear out of nowhere disappear after a while? The reason I am asking is because although people on this forum from the US have mentioned other forms of therapy to treat complex apnea i.e. ASV machine, I'm not sure that the national health service would provide this expensive machine in the UK.

Thanks once again to everyone for your advice I really appreciate it.

frodo763
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Re: HELP!

Post by frodo763 » Fri May 18, 2018 11:11 am

I've just re-read Pugsy's post about my periodic breathing looking nothing like the one to worry about so that has helped a lot. Thanks! :)

rick blaine
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Re: HELP!

Post by rick blaine » Fri May 18, 2018 1:18 pm

Hi Frodo763,

You say you had a private home sleep study. Can I just check what that involved?

In one kind of home sleep study you put on a web harness with a pocket on it for the recording unit (about the size of a pack of cards). And then you put: (a) a clip thing on one of your fingers, (2) an expandible concertina tube round your chest, and (3) two clear plastic tubes into your nostrils. And then all three of those things plug into the recorder.

And then you turn the recorder on, and as best you can, get off to sleep.

That kind of sleep study measures: pulse, oxygen saturation in the blood, actual breath movements, and actual airflow.

There is another kind of sleep study - in the uK, more often offered in the private sector - which involves just the clip thing on your finger, with a lead that plugs into a big, fat 'watch' that you wear on your wrist.

And then, same as before, you do your best to sleep as you would usually.

This second kind only measures pulse and oxygen saturation ('sats').

The thing about this second kind is that, technically, it doesn't record apneas. And it's down to some software and the person reading the results to interpret any de-sats as apneas, and to assign an AHI.

With the studies offered by at least one private agency in the UK that I know of, this interpretation is not done in-house, but is farmed out. And the persons to whom the results are farmed out for interpretation are not necessarily medically-trained, although they may have, say, a biosciences degree.

It is - how can I best put it? - a process which is indicative, but not probative.

The overall numbers may be high enough to allow the agency which supplied the home study to say with some justification that a trial with a machine might be worth doing - but not more than that.

And/ or/ but - if they also sell machines, they will be happy to sell you one. :)

But you need to know - and usually the agency is the first to say this - their communication to you is not a medical diagnosis.

I'm saying all this to get to two points:

The first is: you are - as far as I know - a long way from needing an ASV, although you may have some degree of OSA.

And the fact that you've jumped to that scenario suggests, I have to say, what's called 'catastrophophic thinking'. You mention health anxiety. You might ask your GP to refer you for some Cognitive Behaviour Therapy.

Since there's a waiting list for that too, your GP can 'prescribe' that you read a self-help book or two on CBT - which 'scrip' you take to your local public library. Libraries now keep several copies of a range of approved self-help books just for this.

The second point is a suggestion - a suggestion you are free to take or refuse as you best decide.

The suggestion is: whether you had the first kind of private home sleep study or the second kind of private home study, you should stay on the waiting list for an appointment with the NHS sleep-medicine department, and let them do their version of the first kind of test.

If they decide that you have OSA, then you'll already have the equipment, and you will be officially in their care.

If you don't have an AHI which is high enough to qualify for NHS treatment (which is 15 and above), then you will be not be in their care - for that condition.

In that eventuality, what you do with the equipment is up to you. You can continue to use it, or not. You decide.

And if you want suggestions on how to adjust your pressures, you will find plenty of people wiliing to offer those here.

One more thing if I may - with respect to reducing anxiety in general and removing 'cardiac' symptoms –particularly in someone who is 26 and is in otherwise ok health, you might find this helpful.

https://www.tsft.nhs.uk/media/44408/hyp ... lation.pdf
Last edited by rick blaine on Sat May 19, 2018 5:50 am, edited 1 time in total.

frodo763
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Re: HELP!

Post by frodo763 » Fri May 18, 2018 2:39 pm

Hi Rick

Thanks for your advice. I can confirm that the type of sleep study I did was the first that you mentioned, where I had wires taped all over me with the two things placed under my nose, some kind of belt around my chest and also my finger placed on an oximeter. I suppose you’re right in saying that those who provided the test would encourage me to go through with a cpap machine as it would be in there best interest, however I am fairly confident that I do have OSA to at least some degree as my oxygen levels dropped noticably while sleeping on my back, anatomically I have an elongated uvula and quite a large tongue and I am a little overweight. I have been told by others and also recorded myself sleeping and at times my snoring sounds like a formula one car! All jokes aside yes I am waiting for the NHS test and obviously they will probably have a more extensive study but I have already been waiting many months for this and when I asked my GP he said he didn’t know how long it would be until I have an appointment. It is rather frustrating!

I appreciate your observation that my question was perhaps driven by anxiety but the main reason I jumped to the ASV conclusion was simply because I had no centrals on the home sleep study, and although they may be harmless I don’t particularly like the idea of having complex sleep apnea.

I wasn’t too sure what the link to hyperventilating was for, are you suggesting that I am doing that while sleeping?

Thanks once again for your advice

rick blaine
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Re: HELP!

Post by rick blaine » Fri May 18, 2018 5:06 pm

Hello again, Frodo763,

1. The long waiting lists now in the UK are a result of CPAP treatment proving a success. Ten years ago, the number of people in the UK getting referred for ? OSA ? was miniscule. Now that GPs have seen that it works, and it's cost-effective, and they're seeing a lot fewer TATTs ('tired all the time') and are dishing out fewer blood-pressure pills, they are referring more people.

The sleep-medicine units are now at the receiving end of their own success. The chief physiologist at my sleep-medicine department told me they were seeing 2.500 new patients a year.

And, of course, doing annual follow-ups on the intake from previous years.

2. One thing I wanted to add: PR Syatem One machines are prone to recording anything other than 'normal sinus breathing' as a central. I should know, I have one.

I found out early in my time on APAP that anything other than continuous, rhythmic breathing can show up as centrals. I had been taught breathing exercises (see below) - which exercises included one where you hold your breath for a count of four.

And thinking that 'these exercises are always a good thing', I did a few with the mask on and the machine running.

Next day, a whole bunch of purple marks on my charts. :(

3. You've already been given the opinion by Pugsy that the centrals on your chart are most likely 'sleep-wake-junk'. Hers an opinion worth having. You are new here, so maybe you don't know, but anything Pugsy says about a chart, you can take it to the bank. :)

4. The thing about hyper-ventilation – there is a suggestion that some people with daytime breathng disorders – and hyperventilation syndrome is one of them – are more likely to have some night-time breathing disorder too. And such deviation from sinus rhythm is independent of any obstruction.

Claude Lum was somebody I interviewed on this, and he was of the opinion that just about everybody should pay more attention to their breathing - both in and out of bed. And since the symptoms and consequences of bad breathing are so diverse - Claude Lum was of the opinion that as many as 1 in 10 of all GP presentations was due to bad breathing - maybe there's something in what he said.

The thing is, it doesn't cost anything to do the exercises he suggested his patients should do. And said exercises bring several benefits – including arriving at bed-time considerably less stressed. Which is one element of sleep hygiene.

So maybe they're worth a try. 8)
Last edited by rick blaine on Sun May 20, 2018 8:56 pm, edited 2 times in total.

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chunkyfrog
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Re: HELP!

Post by chunkyfrog » Fri May 18, 2018 5:26 pm

Breathe. Not a bad idea.
Mindful breathing is a good strategy for relaxation.

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Last edited by chunkyfrog on Sun May 20, 2018 9:50 pm, edited 1 time in total.

frodo763
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Re: HELP!

Post by frodo763 » Sun May 20, 2018 2:16 pm

Hey Rick

Thanks again for your response and sorry for not replying to you sooner. I’ve ordered a book on CBT for anxiety that I hope will improve things. It probably didn’t help that I went straight to google to find out what clear airway events were, and periodic breathing and both showed some serious information that would alarm anyone. Unfortunately due to the fact that this is all new to me I didn’t really have any other option, but I’m grateful to you and others who have responded to my original post for putting things into context for me. Do you mind if I ask how you know that it is only for an overall AHI 15 and over that sleep departments will supply cpap treatment? We’re you told that by your doctor? Presuming my future nhs study produces the same results as the home sleep study did, my overall AHI was only 7 yet when on my back it was 39. It’s true that I spend only a percentage of the night sleeping on my back, yet as pugsy said in an earlier post that short amount of time could be doing some damage if left untreated.

Thanks

rick blaine
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Re: HELP!

Post by rick blaine » Sun May 20, 2018 7:43 pm

Hi Frodo763,

I'm scratching my head over what are the best bits of information I can give you that will be the most help. Let's see ....

The staff at most NHS sleep medicine departments are either specialist sleep nurses, or specialist sleep physiologists. The person in charge of the one I go to is the chief sleep physiologist. And the person she reports to is one of the consultants in the lung function department.

The usual thing with new patients is to give them the home sleep study kit, and tell them to bring it back next morning. Only about one in ten new patients is asked to spend the night in the hospital's 'sleep lab' – usually the more complex or unusual cases.

Not every foundation trust hospital has a sleep lab. When they don't have one, they either cross-refer the patient to the nearest FT hospital that does have a lab. Or they send them out to a private sleep lab - of which there are a few up and down the country. (And the NHS pays the private lab.)

I have a hunch that – with what you present - age 26, with mild OSA on your side, but severe OSA on your back - and you mention a long uvula and larger tongue – that when the NHS sleep department eventually do get to see you – they may do their intake study of you in the sleep lab.

That doesn't automatically mean it's anything super serious or to be unduly concerned about. :) More that it's puzzling. And could do with investigating with the right 'tools'.

So I might suggest that, when you do get to that first appointment at the sleep medicine department, that you take with you a xerox of the results from your first sleep study and give that copy to the staff. And that you point up the thing about supine AHI as well as the other things you've posted here - uvula and tongue.

It may be that, at that stage, the person doing the intake will go off to ask the consultant about you - and the consultant, he or she might book you into the sleep lab.

(The weight thing you mentioned you won't have to tell them. One of the first things they do is weigh you and measure your height, to get your BMI.)

As to interpreting the hospital's sleep study - the staff aren't dumb. And they don't apply that AHI of 15 rule in an unthinking way, and irrespective of all other factors. Think about it. If someone were to sleep for seven hours and have 70 apneas – all in the sixth hour – they're not going to say: "Let's see - 70 divided by 7 - that's an AHI of 10 - sorry, you don't make the cut."

They're going to want to find out what's going on.

Which is why I suggested, even if you do self-treat for now, with the machine you've bought, that you stay on the waiting list and go to that appointment.

And in terms of the niceties or protocol, tell your GP that that is what you're doing. :)

As to what you do between now and then - UK law is so difficult. I can't tell you to go on using the machine on the grounds that it is giving some benefit - that's something you must decide.

I also shouldn't ask you: 'Who set the pressures you are now using?' Nor: 'If it wasn't you, do you know how to alter them?' because there's rules, you see .... :)

It might cross my mind that the minimum is a bit low - particularly for supine - but I mustn't say that either. Just as I mustn't say: 'At this stage, with no evidence that pressures above 15 are contra-indicated, there's no reason not to have the maximum at 20 - let the machine show if you need more than 10.5 cm.' All of that, you won't get from me. :)

Likewise - and I'm just talking to myself now - I won't add: as a general rule, auto-adjusting machines like the PR 561 do best when the minimum is set to 1 or 2 cm below your average pressure.

And in that context, I note that you're smart enough to have found Sleepyhead, and downloaded it.

I hope that your intelligence will see past my inability to tell you what to do. 8)