Have to wait 3 months for a sleep study - what to do?
Re: Have to wait 3 months for a sleep study - what to do?
I am in usa.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
Re: Have to wait 3 months for a sleep study - what to do?
@pugsy I bought the s9 with humidifier and heated hose from secondwindcpap.com for $469.
Wroks out 40% cheaper than the Remstar 60 with the humidifier and heated hose from the UK including shipping
Thanks for your help!!
Wroks out 40% cheaper than the Remstar 60 with the humidifier and heated hose from the UK including shipping
Thanks for your help!!
Resmed s9 autoset with humidfier
Re: Have to wait 3 months for a sleep study - what to do?
Hopefully you bought the AutoSet model???
I have a S9 in a different (bilevel) model and I love it. I've bought all my machines privately mainly so I get what I want and avoid the hassle with insurance. It's usually been a wash in terms of cost because of the co pay that I would have out of pocket if I used insurance.
You will want the manual
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf
Here's some software information
https://sleep.tnet.com/equipment
I have a S9 in a different (bilevel) model and I love it. I've bought all my machines privately mainly so I get what I want and avoid the hassle with insurance. It's usually been a wash in terms of cost because of the co pay that I would have out of pocket if I used insurance.
You will want the manual
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf
Here's some software information
https://sleep.tnet.com/equipment
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
Last edited by Pugsy on Sat Oct 22, 2016 2:03 am, edited 1 time in total.
I may have to RISE but I refuse to SHINE.
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Re: Have to wait 3 months for a sleep study - what to do?
Hi tobysmith,
Pugsy said: "[it] just takes a bit of education on your part."
Perhaps I can help that along.
1. First, you don't say which part of the UK you live in. It can make a difference.
Treatment for sleep apnea differs to a certain extent in different parts of the country. It depends on which clinical commissioning group your GP is part of, and which foundation trust hospital he or she sends you to.
2. Second, about that done-at-home 'sleep study' (better to call it a 'study' than a 'test') - who actually gave you the sleep-study kit to use?
I ask because in most areas of the UK, your GP refers you to the sleep service at whichever hospital, and the sleep service staff are the ones who hand out the little nylon-canvas bag with the sleep-study kit in it. And when you're done, you take it back to the sleep service department for assessment.
But increasingly (altho' only in some areas), GPs have decided to buy a few of these sleep-study kits themselves, and they assign the kits to their 'suspicion of' patients. The GPs do this so they can decide who to refer and who not to refer (to the hospital), and so save on the fee charges coming to them and their clinical commissioning group.
So which was it?
3. When you say 'a hospital sleep test', what did 'they' say that would involve? Did they mean 'an overnight stay to repeat the sleep study in more detail (because you have a pre-existing condition as well as the sleep apnea, and 'it's complicated')'?
Or did they mean an overnight stay where a technician would fit you with a mask, and then gradually raise the pressure on their machine while you slept (in the US, this is called 'performing a titration' or sometimes just 'a titration')?
Or did they mean they would loan you an auto-adjusting machine to use at home for a week or so. And then bring back to the sleep service department so they could take out the SD card and use software to decide what fixed pressure you need in a fixed pressure machine?
I'm pretty certain they meant the latter, because fewer than 10 pc of NHS diagnoses are done in a 'sleep lab'. And the percentage of titrations done in a sleep lab is about the same.
4. Now - and this is where it gets interesting - you want to buy your own auto-adjusting machine ... and use it to find out what pressure adjustments you can make yourself. To self-titrate. And to self-treat.
And that's what Pugsy has been advising you on. (And, BTW, she is good. Knows her stuff better than quite a few senior doctors I know.)
If this is your plan, then you need, IMO, to know a few things:
a. Doesn't matter how and in what way you self-treat, you will still need a sleep medicine consultant to sign you off as safe with the DVLA.
b. If you want to buy a machine from either of the two most highly-regarded manufacturers - ResMed UK and Philips Respironics UK - you will need a prescription, or 'scrip'.
There is one company I know of in the UK who will sell you a machine without a scrip - but they require that you do another home sleep study - one that they set you (at a cost of £285) - so they can then say to the authorities, "We're being 'ethical', we're not letting just anybody have one."
And no, your previous test won't count with them. (Myself, I think it's just a little bit of sharp practice, but there it is.)
c. If you buy from abroad - well, it looks as if you have enough information. Import duty is zero for this kind of medical equipment, and so is VAT (for non-UK readers, a kind of sales tax). But there are forms to fill in - I'm sure you know the drill.
5. You might want to think about buying two machines. If not two now, then one now, and another in a few months. So you will always have a back-up machine.
Good luck with your treatment.
Pugsy said: "[it] just takes a bit of education on your part."
Perhaps I can help that along.
1. First, you don't say which part of the UK you live in. It can make a difference.
Treatment for sleep apnea differs to a certain extent in different parts of the country. It depends on which clinical commissioning group your GP is part of, and which foundation trust hospital he or she sends you to.
2. Second, about that done-at-home 'sleep study' (better to call it a 'study' than a 'test') - who actually gave you the sleep-study kit to use?
I ask because in most areas of the UK, your GP refers you to the sleep service at whichever hospital, and the sleep service staff are the ones who hand out the little nylon-canvas bag with the sleep-study kit in it. And when you're done, you take it back to the sleep service department for assessment.
But increasingly (altho' only in some areas), GPs have decided to buy a few of these sleep-study kits themselves, and they assign the kits to their 'suspicion of' patients. The GPs do this so they can decide who to refer and who not to refer (to the hospital), and so save on the fee charges coming to them and their clinical commissioning group.
So which was it?
3. When you say 'a hospital sleep test', what did 'they' say that would involve? Did they mean 'an overnight stay to repeat the sleep study in more detail (because you have a pre-existing condition as well as the sleep apnea, and 'it's complicated')'?
Or did they mean an overnight stay where a technician would fit you with a mask, and then gradually raise the pressure on their machine while you slept (in the US, this is called 'performing a titration' or sometimes just 'a titration')?
Or did they mean they would loan you an auto-adjusting machine to use at home for a week or so. And then bring back to the sleep service department so they could take out the SD card and use software to decide what fixed pressure you need in a fixed pressure machine?
I'm pretty certain they meant the latter, because fewer than 10 pc of NHS diagnoses are done in a 'sleep lab'. And the percentage of titrations done in a sleep lab is about the same.
4. Now - and this is where it gets interesting - you want to buy your own auto-adjusting machine ... and use it to find out what pressure adjustments you can make yourself. To self-titrate. And to self-treat.
And that's what Pugsy has been advising you on. (And, BTW, she is good. Knows her stuff better than quite a few senior doctors I know.)
If this is your plan, then you need, IMO, to know a few things:
a. Doesn't matter how and in what way you self-treat, you will still need a sleep medicine consultant to sign you off as safe with the DVLA.
b. If you want to buy a machine from either of the two most highly-regarded manufacturers - ResMed UK and Philips Respironics UK - you will need a prescription, or 'scrip'.
There is one company I know of in the UK who will sell you a machine without a scrip - but they require that you do another home sleep study - one that they set you (at a cost of £285) - so they can then say to the authorities, "We're being 'ethical', we're not letting just anybody have one."
And no, your previous test won't count with them. (Myself, I think it's just a little bit of sharp practice, but there it is.)
c. If you buy from abroad - well, it looks as if you have enough information. Import duty is zero for this kind of medical equipment, and so is VAT (for non-UK readers, a kind of sales tax). But there are forms to fill in - I'm sure you know the drill.
5. You might want to think about buying two machines. If not two now, then one now, and another in a few months. So you will always have a back-up machine.
Good luck with your treatment.
_________________
Mask: ResMed AirFit™ F20 Full Face CPAP Mask with Headgear |
Humidifier: DreamStation Heated Humidifier |
Last edited by rick blaine on Mon Oct 24, 2016 4:56 pm, edited 6 times in total.
Re: Have to wait 3 months for a sleep study - what to do?
We can help with the education on how to self titrate and come up with optimal pressures. As long as we don't have any complicating factors rear their ugly head it's fairly simple and chances of having a real ugly problem are relatively slim.
Cross that bridge if it comes up.
I wish I could help better with the mask but I just don't have any good full face masks in the donations box and I don't use them myself. If I had any I would just give them to you but the donations (people donate unwanted stuff) is pretty sparse right now.
I have tried several over the years but didn't have much luck due to some personal preferences on my part with the exception of the Amara View which I did try and had good success with and I figure if it can suit me it's a good one to suggest since I tend to be really difficult to please in the full face mask department.
Anyway when you get your machine and are ready to start let me know and I will give you some ideas to start with.
Do get Sleepyhead software...we're going to need it to figure out best pressure.
Cross that bridge if it comes up.
I wish I could help better with the mask but I just don't have any good full face masks in the donations box and I don't use them myself. If I had any I would just give them to you but the donations (people donate unwanted stuff) is pretty sparse right now.
I have tried several over the years but didn't have much luck due to some personal preferences on my part with the exception of the Amara View which I did try and had good success with and I figure if it can suit me it's a good one to suggest since I tend to be really difficult to please in the full face mask department.
Anyway when you get your machine and are ready to start let me know and I will give you some ideas to start with.
Do get Sleepyhead software...we're going to need it to figure out best pressure.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
Re: Have to wait 3 months for a sleep study - what to do?
Yes autosetPugsy wrote:Hopefully you bought the AutoSet mode???
I
Resmed s9 autoset with humidfier
Re: Have to wait 3 months for a sleep study - what to do?
I wouldn't buy a second machine right now. I would wait...even if it's a really good deal.
Let's make sure that this type of machine works well for you.
The chances are this machine will fill all your needs but on the off chance you end up maybe needing something else for some reason or other we don't want you to have 2 machines that you need to find new homes for.
I am thinking of 2 maybes here...and the chances of these maybes being a problem are slim but they are there.
Pressure needs...there's always the chance that pressures over 20 cm might be needed and this machine can't go over 20 so a machine that can go higher might be needed.
And centrals...again slim chance of centrals being a problem but if they are then a different machine might be needed.
Let's make sure that this type of machine works well for you.
The chances are this machine will fill all your needs but on the off chance you end up maybe needing something else for some reason or other we don't want you to have 2 machines that you need to find new homes for.
I am thinking of 2 maybes here...and the chances of these maybes being a problem are slim but they are there.
Pressure needs...there's always the chance that pressures over 20 cm might be needed and this machine can't go over 20 so a machine that can go higher might be needed.
And centrals...again slim chance of centrals being a problem but if they are then a different machine might be needed.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
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- Posts: 616
- Joined: Tue Dec 15, 2015 7:30 am
Re: Have to wait 3 months for a sleep study - what to do?
Hello again, tobysmith,
I see from your post of Friday, 21 October, that you've already bought a machine, and that it's on it's way to you.
Might I make an additional suggestion?
That even though you start using your machine as soon as you get it, and even though you use the Sleepyhead software to guide you in getting the best out of it, that you continue to be an NHS patient.
That is, even though you start self-treating now, go to the appointment the sleep service department gave you - however many weeks it is from now. Tell them your story, let them see your SD card and the progress you've made, and let them supervise you.
If the staff at your sleep service department are anything like the staff at mine, here in Gloucestershire, they won't mind a bit. Indeed, the fact that you've already got a machine just means they have one more to give to someone else.
There are some advantages in your doing this:
i. The sleep service staff will try out on you a range of masks to find the one that works best for you. Then they will give you that mask. 'Free at the point of delivery', as they say, and at no direct cost to you.
ii. You don't say what decision you've made on your own about masks. The sad fact is that none of the UK sellers of masks that I know of have a try-and-return-within-30-days policy. Once you open the sterile wrapping ...
Your best bet might be to buy one - say, the quite widely-tolerated and well-liked ResMed Mirage Quattro - and then wait till you get to that appointment, and try other masks on then.
iii. In addition to that first appointment, you will be given an annual follow up. At which annual follow up, you should be given any replacement mask parts you need - or even get try on newer models of mask as they come out. Again, at no further cost to you.
iv. By having your progress supervised, your consultant can happily sign the DVLA forms for you to get your licence back.
v. Your own GP can be satisfied that you are getting official treatment, and thus can feel they are fulfilling their duty of care to you.
It's up to you. You can be as independent and self-determining as you like. Or you can get the best of both worlds.
Like wot I do.
I see from your post of Friday, 21 October, that you've already bought a machine, and that it's on it's way to you.
Might I make an additional suggestion?
That even though you start using your machine as soon as you get it, and even though you use the Sleepyhead software to guide you in getting the best out of it, that you continue to be an NHS patient.
That is, even though you start self-treating now, go to the appointment the sleep service department gave you - however many weeks it is from now. Tell them your story, let them see your SD card and the progress you've made, and let them supervise you.
If the staff at your sleep service department are anything like the staff at mine, here in Gloucestershire, they won't mind a bit. Indeed, the fact that you've already got a machine just means they have one more to give to someone else.
There are some advantages in your doing this:
i. The sleep service staff will try out on you a range of masks to find the one that works best for you. Then they will give you that mask. 'Free at the point of delivery', as they say, and at no direct cost to you.
ii. You don't say what decision you've made on your own about masks. The sad fact is that none of the UK sellers of masks that I know of have a try-and-return-within-30-days policy. Once you open the sterile wrapping ...
Your best bet might be to buy one - say, the quite widely-tolerated and well-liked ResMed Mirage Quattro - and then wait till you get to that appointment, and try other masks on then.
iii. In addition to that first appointment, you will be given an annual follow up. At which annual follow up, you should be given any replacement mask parts you need - or even get try on newer models of mask as they come out. Again, at no further cost to you.
iv. By having your progress supervised, your consultant can happily sign the DVLA forms for you to get your licence back.
v. Your own GP can be satisfied that you are getting official treatment, and thus can feel they are fulfilling their duty of care to you.
It's up to you. You can be as independent and self-determining as you like. Or you can get the best of both worlds.
Like wot I do.
_________________
Mask: ResMed AirFit™ F20 Full Face CPAP Mask with Headgear |
Humidifier: DreamStation Heated Humidifier |
Last edited by rick blaine on Sat May 06, 2017 4:03 pm, edited 4 times in total.
Re: Have to wait 3 months for a sleep study - what to do?
Just wanted to add that I got a used machine before my titration and had help here setting everything up. When I actually had my titration, this turned out to be a boon to the tech because she could see what was working for me and it helped to refine. I even had complicating factors and my world did not blow up, so be confident!!
Also, be aware that I read that you have to discontinue your cpap a couple of nights before your sleep study. I personally think this is only important if you are borderline as it could affect your results. I can't see how it would substantially affect your sleep study results otherwise, but maybe other would know that.
Also, be aware that I read that you have to discontinue your cpap a couple of nights before your sleep study. I personally think this is only important if you are borderline as it could affect your results. I can't see how it would substantially affect your sleep study results otherwise, but maybe other would know that.
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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Sleepyhead |
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Airsense For Her; Settings: range 8-12, Airfit P10 (M)
Airsense For Her; Settings: range 8-12, Airfit P10 (M)
Re: Have to wait 3 months for a sleep study - what to do?
@rick blaine
from hope2sleep.co.uk - £55 home sleep test because my GP kept fobbing me off (first went in suspecting Apnea based on symptoms in 2013, been another 3 times since and they prescribed me anti depressants which I said no thanks to)
Londonrick blaine wrote:Hi tobysmith,
Pugsy said: "[it] just takes a bit of education on your part."
Perhaps I can help that along.
1. First, you don't say which part of the UK you live in. It can make a difference.
rick blaine wrote:Hi tobysmith,
2. Second, about that done-at-home 'sleep study' (better to call it a'study' than a 'test') - who actually gave you the sleep-study kit to use?
from hope2sleep.co.uk - £55 home sleep test because my GP kept fobbing me off (first went in suspecting Apnea based on symptoms in 2013, been another 3 times since and they prescribed me anti depressants which I said no thanks to)
No idea. Said I would get "referral" and had to wait for a letter!rick blaine wrote:Hi tobysmith,
3. When you say 'a hospital sleep test', what did 'they' say that would involve? Did they mean 'an overnight stay to repeat the sleep study in more detail (because you have a pre-existing condition as well as the sleep apnea, and 'it's complicated')'?
No - i don't know the drill for individuals. What tax forms are there?rick blaine wrote:Hi tobysmith,
c. If you buy from abroad - well, it looks as if you have enough information. Import duty is zero for this kind of medical equipment, and so is VAT (for non-UK readers, a kind of sales tax). But there are forms to fill in - I'm sure you know the drill.
Resmed s9 autoset with humidfier
Re: Have to wait 3 months for a sleep study - what to do?
Yes, I will continue down the NHS route. The doc had fobbed me off so many times that once I got the private results, I cracked on. Last year I waited 5 months for an MRI.rick blaine wrote:Hello again, tobysmith,
That even though you start using your machine as soon as you get it, and even though you use the Sleepyhead software to guide you in getting the best out of it, that you continue to be an NHS patient.
Also - I bought the Resmed P10 and F10 to test [f10 as backup to the p10 because I breathe through my mouth a lot] - both with headgear
Resmed s9 autoset with humidfier
Re: Have to wait 3 months for a sleep study - what to do?
Obviously without the full sleep study I am taking the risk that I actually do have sleep apnea, since I only have the at-home study. On that one, my saturations were not dropping much despite regular 30-60 apneas.Pugsy wrote:We can help with the education on how to self titrate and come up with optimal pressures. As long as we don't have any complicating factors rear their ugly head it's fairly simple and chances of having a real ugly problem are relatively slim.
Cross that bridge if it comes up.
My lowest was 89% but I was mainly around 92-95%. Edit: I see some people saying they have OSA but don't have desats beyond 90% so maybe this isn't so telling??
When I fall asleep on my back I wake myself up immediately with choking, I can almost feel my airway closing as I drift off and then I get a startle awake. Actually even on the side and front I can feel it getting hard to breathe as a lay there.
From reading the success stories here, the "before" descriptions of many perfectly describe me. Nightmares, long long time in bed but never feeling rested. I've slept through the night once in the last 15 years - I remember it very clearly because it was like a different world the next day, everything was easy and magical.
So we'll see. I thought getting a A-CPAP machine ASAP and using that to test was better than waiting 3-5 months for a sleep study (or getting fobbed off again).
Resmed s9 autoset with humidfier
Re: Have to wait 3 months for a sleep study - what to do?
this is correct, you can have significantly sleep disordered breathing and still not have bad destaurations. all depends on how fast you rouse yourself and start breathing again..tobysmith wrote:Obviously without the full sleep study I am taking the risk that I actually do have sleep apnea, since I only have the at-home study. On that one, my saturations were not dropping much despite regular 30-60 apneas.Pugsy wrote:We can help with the education on how to self titrate and come up with optimal pressures. As long as we don't have any complicating factors rear their ugly head it's fairly simple and chances of having a real ugly problem are relatively slim.
Cross that bridge if it comes up.
My lowest was 89% but I was mainly around 92-95%. Edit: I see some people saying they have OSA but don't have desats beyond 90% so maybe this isn't so telling??
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Re: Have to wait 3 months for a sleep study - what to do?
I have a friend who had an in lab diagnostic sleep study. Her AHI was 60 plus...her oxygen levels never really dropped all that much..the lowest was 94% from a normal of 96 to 97 baseline. I saw her report so I know that is what was reported and not her faulty memory.
While oxygen levels that drop can sure be a real indicator for diagnosing sleep apnea...the absence of any significant dropping doesn't necessarily mean no sleep apnea.
There's more to sleep apnea than just oxygen levels anyway...there's sleep fragmentation or insomnia and poor restorative sleep in general.
It's one of the reasons that I don't believe in relying solely on an overnight pulse ox text for sleep apnea diagnosing.
While oxygen levels that drop can sure be a real indicator for diagnosing sleep apnea...the absence of any significant dropping doesn't necessarily mean no sleep apnea.
There's more to sleep apnea than just oxygen levels anyway...there's sleep fragmentation or insomnia and poor restorative sleep in general.
It's one of the reasons that I don't believe in relying solely on an overnight pulse ox text for sleep apnea diagnosing.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
Re: Have to wait 3 months for a sleep study - what to do?
OK great, thanks.
I'm super interested/terrified about whether the machine helps me.
I saw a post of yours from June Pugsy in response to someone who thought they would be "fixed" from CPAP
"Sleep maintenance insomnia...that's when we wake up during the night either often and/or have trouble going back to sleep. It's a bitch for sure. Sometimes we can figure out what the cause is and fix it...sometimes we can't and that is sure frustrating.
When we find out we have OSA the gut reaction is to blame insomnia issues on the OSA and expect the cpap machine to fix it...but sometimes we have insomnia for other reasons than OSA and the machine can't fix bad sleep if the bad sleep is caused by something other than OSA. "
I've definitely been thinking "aha this is finally IT, i know the issue and I know the solution". But i need to keep open minded to it. It may not be the solution (or the issue).
I'm super interested/terrified about whether the machine helps me.
I saw a post of yours from June Pugsy in response to someone who thought they would be "fixed" from CPAP
"Sleep maintenance insomnia...that's when we wake up during the night either often and/or have trouble going back to sleep. It's a bitch for sure. Sometimes we can figure out what the cause is and fix it...sometimes we can't and that is sure frustrating.
When we find out we have OSA the gut reaction is to blame insomnia issues on the OSA and expect the cpap machine to fix it...but sometimes we have insomnia for other reasons than OSA and the machine can't fix bad sleep if the bad sleep is caused by something other than OSA. "
I've definitely been thinking "aha this is finally IT, i know the issue and I know the solution". But i need to keep open minded to it. It may not be the solution (or the issue).
Resmed s9 autoset with humidfier