Ive been diagnosed with Severe Sleep Apnea – Advice Please

Ben_Dover · Post by **Ben_Dover** » Sun Dec 05, 2021 9:59 pm

loggerhead12 wrote: ↑
Sun Dec 05, 2021 9:38 pm

Ben_Dover wrote: ↑
Sun Dec 05, 2021 8:13 pm
Can you please explain your comment ( Something to marvel at: you have severe apnea and your AHI was 1.89! ) should I be alarmed at that number ?
On the contrary. Severe sleep apnea means an AHI of greater than 30 and potentially much higher. 1.89 is a great number, especially just starting out. However, AHI isn't everything.

Thanks for that , I have a lot to learn .

I just want to sleep soundly without being woken up by the something sticking in the throat syndrome . May be its going to take a long time to achieve that , I really hope with the help of you guys here and my Resmed Airsense 10 machine I can one day overcome things and have a good uninterrupted nights sleep .

Ben.

MMcG · Post by **MMcG** » Mon Dec 06, 2021 5:06 am

Hi Ben. I'll leave the diagnosis to the experts here. But maybe my personal experience will shed some useful light too. I've been on CPAP treatment (It's a Devilbiss/Intellipap APAP machine with min and max pressure settings like yours) for nearly three months now. And it's been a real struggle. Initially, I couldn't sleep at all with the feel of the mask on my face. So a few night of lying awake for three hours before finally giving in and removing the mask. Then frustration kept me from getting back to sleep too. Eventually, exhaustion took over and I managed more than four hours usage and maybe three hours sleep after about 4-5 nights. So, I went through about another 4 weeks or so of no more than 4-5 hours usage and maybe 3-4 hours sleep plus maybe another hour of light sleep without it.

Things gradually improved though, so that now a good night is 8 hours usage and maybe 7 asleep, while a bad night is 6-7 hours usage and maybe 5-6 hours sleep plus some light sleep afterwards. I still wake approximately every two hours, but usually fall asleep again within minutes. I've been assured by my sleep technician that it's not a problem as it probably concurs with the "sleep cycle" and is normal - most people just don't remember. BTW my sleep study ranked my apnea as moderate (AHI 22.6), but that AHI figure masked that my apneas were quite long, so in reality the effect on me was severe (in terms of both sleep and oxygen deprivation).

Can I ask if last night was typical, i.e. are you only using the machine for about 1.5 hours nightly? If so, after two months, there is definitely something amiss. Hopefully, the technical folk here can find out for you. But I suspect you need to get a bit more usage over a few nights to be definitive. Maybe the full face mask will work for you, but in my experience, you will struggle with a new mask for some time too - you just have to persist.

A final thought. I suspect that you may have been awake or semi-awake most of the 1.5 hours, given the low AHI number despite the relatively low pressure. You can zoom in on the flow rate graph (pushing the up/down keys on your keyboard) to see your breathing pattern in more detail. Awake breathing looks somewhat different to sleep breathing to a trained eye, sot I suspect some screen shots of the zoomed flow rate chart at different times would be helpful to the experts here too.

If you want to message me, feel free. We can at least share our pain! If nothing else, it's very helpful to know that you're not alone with this struggle. Take care, Michael.

Miss Emerita · Post by **Miss Emerita** » Mon Dec 06, 2021 12:47 pm

Sorry I wasn't clear! As others have said, I was thinking how wonderful it is that your AHI is below 2 when it must have been above 30 earlier. That is a very encouraging sign.

The fact that you don't need a lot of pressure to achieve these results is neither here nor there; everyone's pressure needs are different, and they don't correspond with severity of apnea. (For example, I was diagnosed with an AHI of 23, and I need an exhale pressure of only 5 to avoid obstructive apnea events.)

What positions do you sleep in: back, sides, stomach? If you tend to sleep on your back, you might do better on your sides, maybe with your head near the side of your pillow so it slants downward a little bit. If your tongue is sliding into your airway, that might help.

You might also benefit from setting the machine up during the day or evening -- outside your bedroom -- and using it while you read or watch TV. This will help you get used to the feel of the whole experience, which might let you sleep a little better with it.

I'll be curious how you felt with the new minimum of 6. Keep us posted, would you?

Ben_Dover · Post by **Ben_Dover** » Mon Dec 06, 2021 7:09 pm

MMcG wrote: ↑
Mon Dec 06, 2021 5:06 am
Hi Ben. I'll leave the diagnosis to the experts here. But maybe my personal experience will shed some useful light too. I've been on CPAP treatment (It's a Devilbiss/Intellipap APAP machine with min and max pressure settings like yours) for nearly three months now. And it's been a real struggle. Initially, I couldn't sleep at all with the feel of the mask on my face. So a few night of lying awake for three hours before finally giving in and removing the mask. Then frustration kept me from getting back to sleep too. Eventually, exhaustion took over and I managed more than four hours usage and maybe three hours sleep after about 4-5 nights. So, I went through about another 4 weeks or so of no more than 4-5 hours usage and maybe 3-4 hours sleep plus maybe another hour of light sleep without it.

Things gradually improved though, so that now a good night is 8 hours usage and maybe 7 asleep, while a bad night is 6-7 hours usage and maybe 5-6 hours sleep plus some light sleep afterwards. I still wake approximately every two hours, but usually fall asleep again within minutes. I've been assured by my sleep technician that it's not a problem as it probably concurs with the "sleep cycle" and is normal - most people just don't remember. BTW my sleep study ranked my apnea as moderate (AHI 22.6), but that AHI figure masked that my apneas were quite long, so in reality the effect on me was severe (in terms of both sleep and oxygen deprivation).

Can I ask if last night was typical, i.e. are you only using the machine for about 1.5 hours nightly? If so, after two months, there is definitely something amiss. Hopefully, the technical folk here can find out for you. But I suspect you need to get a bit more usage over a few nights to be definitive. Maybe the full face mask will work for you, but in my experience, you will struggle with a new mask for some time too - you just have to persist.

A final thought. I suspect that you may have been awake or semi-awake most of the 1.5 hours, given the low AHI number despite the relatively low pressure. You can zoom in on the flow rate graph (pushing the up/down keys on your keyboard) to see your breathing pattern in more detail. Awake breathing looks somewhat different to sleep breathing to a trained eye, sot I suspect some screen shots of the zoomed flow rate chart at different times would be helpful to the experts here too.

If you want to message me, feel free. We can at least share our pain! If nothing else, it's very helpful to know that you're not alone with this struggle. Take care, Michael.

Hi and thanks for your thoughts and personal experience outline. its really appreciated .

Like your self I am finding it a uphill battle to get use to the feel of a mask on my face , which ends with me taking off the mask and switching off my machine. Your experience and the fact that over time you managed to stay with it and things started to improve , gives me encouragement and hope.

As I’m a newbie to my situation , finding this forum and being able to ask for help and receive great advice from others like your self is for me a real positive and now I don’t feel so alone.

Ben.

Ben_Dover · Post by **Ben_Dover** » Mon Dec 06, 2021 7:19 pm

Miss Emerita wrote: ↑
Mon Dec 06, 2021 12:47 pm
Sorry I wasn't clear! As others have said, I was thinking how wonderful it is that your AHI is below 2 when it must have been above 30 earlier. That is a very encouraging sign.

The fact that you don't need a lot of pressure to achieve these results is neither here nor there; everyone's pressure needs are different, and they don't correspond with severity of apnea. (For example, I was diagnosed with an AHI of 23, and I need an exhale pressure of only 5 to avoid obstructive apnea events.)

What positions do you sleep in: back, sides, stomach? If you tend to sleep on your back, you might do better on your sides, maybe with your head near the side of your pillow so it slants downward a little bit. If your tongue is sliding into your airway, that might help.

You might also benefit from setting the machine up during the day or evening -- outside your bedroom -- and using it while you read or watch TV. This will help you get used to the feel of the whole experience, which might let you sleep a little better with it.

I'll be curious how you felt with the new minimum of 6. Keep us posted, would you?

Thanks for getting back .

Well last night I set my machine to min pressure 6 – max pressure 20 .

This time I used my Phillips Respironics DreamWear Full face mask ( Medium mask size ) .

Wearing that face mask at first felt comfortable so as normal I went from laying on my back to sleeping on my side. My head was laying sideways on a fairly firm pillow and the machine seemed to be working normally .

As I lay on my side now using the full face mask I felt some how better than I did the night before when I used the ResMed AirFit N30i.

After a few minuets I could feel an increase in the amount of air being delivered into the face mask and at the same time the noise of air coming into the face mask seemed to be getting louder ( louder than when I used the N30i last night ) Using the N30i mask the air coming into that mask was not so noisy .

So I’m laying sideways wearing the DreamWear Full face mask and the air coming into the mask is making a sort of rushing sound . The only way I could stop that air rushing sound was to open my mouth , once I closed my mouth the air rushing sound returned.

This air rushing into the mask sound started to annoy me to the extent that I could not become sleepy or go to sleep.

So after about two hours I had to take the mask off and switch the machine off. One thing I did notice was that during the time period I was wearing the face mask I never got the sensations of either choking on something or have something stuck in my throat.

After removing the face mask and turning off the machine I did not manage to really fall asleep , just nodding of for short periods.

This morning after getting out of bed , I feel tired and some what bad tempered and irritable.

This is last nights OSCAR report .

Any thoughts , comments or advice most welcome

Ben.

Pugsy · Post by **Pugsy** » Mon Dec 06, 2021 7:51 pm

Just to be clear....you never went to sleep at all during the almost 2 hours showing on this report...and then you took the mask off and slept without the mask????

You had issues with the mask and air flow and noise that caused your brain to be hyper focused on these issues and prevent falling asleep?

Have you ever actually slept for any period of time with the mask and machine on?
Awake time on the machine...doesn't really tell us much. It's called sleep apnea because one has to be asleep for the problem to happen and have it matter.

It doesn't surprise me you felt crappy and irritable today....short hours of sleep for one thing and untreated sleep apnea events probably happened for the other thing. Poor sleep over all.

Gotta get the sleep first though. That nice low AHI means nothing if you weren't asleep.

Ben_Dover · Post by **Ben_Dover** » Mon Dec 06, 2021 8:14 pm

Pugsy wrote: ↑
Mon Dec 06, 2021 7:51 pm
Just to be clear....you never went to sleep at all during the almost 2 hours showing on this report...and then you took the mask off and slept without the mask????

You had issues with the mask and air flow and noise that caused your brain to be hyper focused on these issues and prevent falling asleep?

Have you ever actually slept for any period of time with the mask and machine on?
Awake time on the machine...doesn't really tell us much. It's called sleep apnea because one has to be asleep for the problem to happen and have it matter.

It doesn't surprise me you felt crappy and irritable today....short hours of sleep for one thing and untreated sleep apnea events probably happened for the other thing. Poor sleep over all.

Gotta get the sleep first though. That nice low AHI means nothing if you weren't asleep.

Last night during the 2 hours while using the machine and wearing a mask , I never managed to go to sleep.

Once I took the mask off and switched the machine off , I did not really manage to go fully to sleep , just nodding off for short periods and then being awake again.

Since I purchased the machine and started to use it , I have never been able to go to sleep at all , wearing any mask .

Getting a good nights sleep is some thing I’m really looking forward to having . This feeling grumpy and tired when I get out of bed in the morning , is not some thing I like .

Ben.

CyberSpiff · Post by **CyberSpiff** » Mon Dec 06, 2021 8:30 pm

Ben_Dover wrote: ↑
Mon Dec 06, 2021 8:14 pm
Since I purchased the machine and started to use it , I have never been able to go to sleep at all , wearing any mask .

Sorry mate, I can’t help with settings but have learned a lot from Pugsy and others who have responded to your queries. What I can share is it took me a while to get used to the bloody thing hanging off my face. What made the difference was getting used to wearing it whilst watching the telly a little bit each night until it felt comfortable. I had to learn how to tighten it properly until I almost did not realise it was on as I got used to it. I wanted to tighten it too much but learned it is a balance to get a proper fit with the right mask at a proper tightness.

You can get used to it as we all have done over time, just don’t try to change too many parameters at a time. You will get frustrated and want to toss the bloody thing out the window at times, but when you reach that point come here to ask for advice or just to vent. Do yourself a favour and give yourself time.

loggerhead12 · Post by **loggerhead12** » Mon Dec 06, 2021 8:38 pm

Ben_Dover wrote: ↑
Mon Dec 06, 2021 8:14 pm
Since I purchased the machine and started to use it , I have never been able to go to sleep at all , wearing any mask .

Getting a good nights sleep is some thing I’m really looking forward to having .

You'll get there. It takes a while to learn to sleep in a mask. When you start sleeping like you did when you were a child it'll be worth it.

Turning on my machine at night may not be the the best thing that happened all day but it's certainly in the top three most days.

Ben_Dover · Post by **Ben_Dover** » Mon Dec 06, 2021 9:05 pm

CyberSpiff wrote: ↑
Mon Dec 06, 2021 8:30 pm

Ben_Dover wrote: ↑
Mon Dec 06, 2021 8:14 pm
Since I purchased the machine and started to use it , I have never been able to go to sleep at all , wearing any mask .
Sorry mate, I can’t help with settings but have learned a lot from Pugsy and others who have responded to your queries. What I can share is it took me a while to get used to the bloody thing hanging off my face. What made the difference was getting used to wearing it whilst watching the telly a little bit each night until it felt comfortable. I had to learn how to tighten it properly until I almost did not realise it was on as I got used to it. I wanted to tighten it too much but learned it is a balance to get a proper fit with the right mask at a proper tightness.

You can get used to it as we all have done over time, just don’t try to change too many parameters at a time. You will get frustrated and want to toss the bloody thing out the window at times, but when you reach that point come here to ask for advice or just to vent. Do yourself a favour and give yourself time.

Hi and thanks for your kind encouragement , its appreciated.

The more I read from members here , the more I am coming to realize that my quest to finally get a decent nights sleep may be a long and winding path I have to take.

Your comment is really encouraging and I’m going to stick with it until I can finally post back here .......... Yes I had a good nights sleep .

Ben

Ben_Dover · Post by **Ben_Dover** » Mon Dec 06, 2021 9:10 pm

loggerhead12 wrote: ↑
Mon Dec 06, 2021 8:38 pm

Ben_Dover wrote: ↑
Mon Dec 06, 2021 8:14 pm
Since I purchased the machine and started to use it , I have never been able to go to sleep at all , wearing any mask .

Getting a good nights sleep is some thing I’m really looking forward to having .
You'll get there. It takes a while to learn to sleep in a mask. When you start sleeping like you did when you were a child it'll be worth it.

Turning on my machine at night may not be the the best thing that happened all day but it's certainly in the top three most days.

Thanks , The part I really like is ..... sleeping like you did when you were a child .

I'm going to try and get use to wearing a face mask , but I have a strange feeling in the back of my mind that I may still be doing some thing wrong

Ben.

Pugsy · Post by **Pugsy** » Mon Dec 06, 2021 9:46 pm

Your primary goal right now has to be actually falling asleep with the mask and machine on.
It's not easy and you aren't the first one to have this problem and you won't be the last.

Where are you located?
Have you talked to your doctor about this issue?
Have you tried desensitizing by wearing the mask during the day and/or using the machine while awake...watching TV or reading and under no pressure to go to sleep?

Ben_Dover · Post by **Ben_Dover** » Tue Dec 07, 2021 1:00 am

Pugsy wrote: ↑
Mon Dec 06, 2021 9:46 pm
Your primary goal right now has to be actually falling asleep with the mask and machine on.
It's not easy and you aren't the first one to have this problem and you won't be the last.

Where are you located?
Have you talked to your doctor about this issue?
Have you tried desensitizing by wearing the mask during the day and/or using the machine while awake...watching TV or reading and under no pressure to go to sleep?

Thanks.

I’m originally from England but currently staying with my Vietnamese wife’s family near the Vietnam boarder , to look after her sick mother. I underwent a sleep study and purchased the Resmed Airsense 10 machine back in the UK. I can email the sleep specialist , but with the time zone difference its a bit awkward.

Its a bit difficult to wear the mask during the day due to having to constantly travel back and forth from our house to the wife’s mother’s house .

Tonight I’m going to try a different size mask ( last night the mask size was medium ) and see if that makes things better.

Thanks for all your help , its really appreciated.

Ben.

Pugsy · Post by **Pugsy** » Tue Dec 07, 2021 8:10 am

Ok...thanks....I have a better picture of things.

I didn't mean to actually wear and use the machine at all times during the day.
When you are at your house...can you set aside some time to just play with things for a short period of time.
Even 30 minutes a few times a day????? Or even 15 minutes????
The idea is to desensitize things a bit so the brain won't look at the mask and machine as something to be on the alert about and instead come to realize the mask is its new best friend. When the brain goes on hyper alert status it will target EVERY little potentially annoying thing and blow it up so you stay wide awake and can't fall asleep. The brain thinks it is doing you a favor but it isn't. Unfortunately retraining the brain isn't an easy job at all.

If you aren't under self imposed pressure to fall asleep the brain might learn to relax a bit.

Can you safely take some sort of OTC sleep aid at bedtime? Might be worth trying.

CyberSpiff · Post by **CyberSpiff** » Tue Dec 07, 2021 8:47 am

Ben_Dover wrote: ↑
Tue Dec 07, 2021 1:00 am
I’m originally from England but currently staying with my Vietnamese wife’s family near the Vietnam boarder , to look after her sick mother. I underwent a sleep study and purchased the Resmed Airsense 10 machine back in the UK. I can email the sleep specialist , but with the time zone difference its a bit awkward.

Its a bit difficult to wear the mask during the day due to having to constantly travel back and forth from our house to the wife’s mother’s house .

Tonight I’m going to try a different size mask ( last night the mask size was medium ) and see if that makes things better.

Brilliant! Another ex-pat. Same here but I’m in the States, though I do get back for a bit each year. Depending on your sleep specialist you may or may not get helpful advice. Thankfully this forum exists to keep us from faffing around with it.

Don’t force things, change a lot of things, or get narked, it will make you crazy. Take your time and make small incremental changes. For example last night we went out with some mates for the wife’s birthday and I may have consumed a pint or two (maybe even three), didn’t sleep well as a result, so I’m pretty shirty today. I know it comes from the drink, so no worries as I know it will be better tonight.

Look at videos from TheLankyLefty27 on YouTube for suggestions. The lad Jason is full of beans and has sage advice. He’s a bit of a funny bunny, but I have found his videos very helpful. As it is all recorded you can watch them anytime. CPAP is a new experience for us and it takes time and we are fortunate to learn from others who have traveled the path before us.

Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please

Re: Ive been diagnosed with Severe Sleep Apnea – Advice Please