New CPAP therapy not working right

[Guest]

Hi,

Very new here, and have a lot of questions about my therapy.

I was recently diagnosed with Sleep Apnea about 4 weeks ago, and 2 weeks ago was given a Resmed Elite, with the Quattro FX mask size Medium. To start they gave me an oximeter test which told them my API is 50 so the doctor has set the machine to a pressure of 10.2 which either starts after 30 minutes from 4, or as I found out last night when my breathing slows down. I'm not sure how my doctor came up with the 10.2, but was told there was a formula for working this out. I was told not to make any changes to the machine until my next visit in about 6 weeks or so and have been struggling to cope with the new lifestyle.

It's been very hard on both myself and my wife getting used to the machine. Due mainly to embarrassment of using the mask I wait until my wife and kids are asleep before I go to bed, but as soon as I do my wife normally wakes up. The machine isn't loud as such, but I have been fiddling with the mask so much I think I wake her up. I used to have loud snoring which I'm told by my wife is still there, though not as bad when I wear the mask. The issue being I can't wear the mask all night. As soon as the pressure ramps up to 10 I wake up due to either mask leaks, or the inability to breathe. After the two weeks I average about 4 hours sleep a night with 2 of those being with the mask on. I'm more exhausted now then before I was diagnosed which isn't helping as I have less energy now than before.

Because of how much I hate the treatment I've changed my eating habits to reduce weight. When I was diagnosed I was about 280 lbs and was told this is the main cause of my apnea. Before I wasn't eating a lot of food, just the wrong type of foods and at the wrong times. I would eat the bulk of my calories about 1 hour before bedtime. Now I've increased my fruit eating to about 3 or 4 per day, and switched to wheat bread and oat type foods. Also instead of having one big meal a day, I have three smaller meals per day, and never eat past about 7:30pm. Even before I was diagnosed I used to walk during my 30 minute lunch for about 1.7 miles 4-5 days a week. Funny thing is I have yet to lose any weight and even counting calories to around 1400 per day isn't working. It's enough to drive me insane trying to figure out how to get better.

I do have to be thankful for the great socialistic nature of the Uk healthcare though as it's free, however this means I don't get a lot of choices of equipment I can use. If possible could you all answer a few questions for me?

How can I tell if the mask is too large or small for me? I was fitted by a nurse when I got the machine and told it was a suitable mask for a mouth breather.
How long do I persist with trying to use the machine before I contact the Doctor/Nurse?
How do I get my mask to stay sealed? I fall asleep on my side, but normally move to my back when asleep. As soon as the pressure increases it wakes me up.
Where can I find out the best way to fit it without being too loose or too tight?
I am trying to plan on moving back to the States in a year or so, how would the treatment transfer over? I'm not sure if anyone would know.
and finally though not Sleep Apnea related, how do I lose weight? I'm already restricting my diet to around 1500 cals per day (Uk health service says my weight needs 3,300 cals to maintain current weight so it should be falling off) and walking. What else can I do to reduce the amount of time I'm on treatment for?


Thank you very much. I really want this to work so I can feel better throughout the day, and with any luck get a bit healthier along the way.

[SleeplessUK]

Hi,

Very new here, and have a lot of questions about my therapy.

I was recently diagnosed with Sleep Apnea about 4 weeks ago, and 2 weeks ago was given a Resmed Elite, with the Quattro FX mask size Medium. To start they gave me an oximeter test which told them my API is 50 so the doctor has set the machine to a pressure of 10.2 which either starts after 30 minutes from 4, or as I found out last night when my breathing slows down. I'm not sure how my doctor came up with the 10.2, but was told there was a formula for working this out. I was told not to make any changes to the machine until my next visit in about 6 weeks or so and have been struggling to cope with the new lifestyle.

It's been very hard on both myself and my wife getting used to the machine. Due mainly to embarrassment of using the mask I wait until my wife and kids are asleep before I go to bed, but as soon as I do my wife normally wakes up. The machine isn't loud as such, but I have been fiddling with the mask so much I think I wake her up. I used to have loud snoring which I'm told by my wife is still there, though not as bad when I wear the mask. The issue being I can't wear the mask all night. As soon as the pressure ramps up to 10 I wake up due to either mask leaks, or the inability to breathe. After the two weeks I average about 4 hours sleep a night with 2 of those being with the mask on. I'm more exhausted now then before I was diagnosed which isn't helping as I have less energy now than before.

Because of how much I hate the treatment I've changed my eating habits to reduce weight. When I was diagnosed I was about 280 lbs and was told this is the main cause of my apnea. Before I wasn't eating a lot of food, just the wrong type of foods and at the wrong times. I would eat the bulk of my calories about 1 hour before bedtime. Now I've increased my fruit eating to about 3 or 4 per day, and switched to wheat bread and oat type foods. Also instead of having one big meal a day, I have three smaller meals per day, and never eat past about 7:30pm. Even before I was diagnosed I used to walk during my 30 minute lunch for about 1.7 miles 4-5 days a week. Funny thing is I have yet to lose any weight and even counting calories to around 1400 per day isn't working. It's enough to drive me insane trying to figure out how to get better.

I do have to be thankful for the great socialistic nature of the Uk healthcare though as it's free, however this means I don't get a lot of choices of equipment I can use. If possible could you all answer a few questions for me?

How can I tell if the mask is too large or small for me? I was fitted by a nurse when I got the machine and told it was a suitable mask for a mouth breather.
How long do I persist with trying to use the machine before I contact the Doctor/Nurse?
How do I get my mask to stay sealed? I fall asleep on my side, but normally move to my back when asleep. As soon as the pressure increases it wakes me up.
Where can I find out the best way to fit it without being too loose or too tight?
I am trying to plan on moving back to the States in a year or so, how would the treatment transfer over? I'm not sure if anyone would know.
and finally though not Sleep Apnea related, how do I lose weight? I'm already restricting my diet to around 1500 cals per day (Uk health service says my weight needs 3,300 cals to maintain current weight so it should be falling off) and walking. What else can I do to reduce the amount of time I'm on treatment for?


Thank you very much. I really want this to work so I can feel better throughout the day, and with any luck get a bit healthier along the way.

Not sure why, but my last post was as a guest, but it was me.

[zoocrewphoto]

Welcome to the group.

Did you have a titration test where you sleep in the lab with the machine? It sounds like you did not, so the doctor took a wild guess on your pressure needs. AHI (events per hour) does NOT tell anybody how much pressure you need. You could have a lot of events and need very little pressure or a lot of pressure. There is also newer info about sleep apnea and weight (often the sleep apnea causes the weight gain, not the other way around). Sounds like your doctor doesn't have all the info he needs to help you.

Personally, I would not wait until the next appointment. Your machine has data, and you have two free options for software - sleepyhead and ResScan. You need to see what your events are (type of events, how long they are, if they are clustered, etc). You also need to see how your leaks are doing. You may do okay with a lower pressure. You may not. But it helps to see the data when making changes.

If you get the software and upload the graphs from a typical night, we can help you adjust your machine to give you better success.

[SleeplessUK]

Welcome to the group.

Did you have a titration test where you sleep in the lab with the machine? It sounds like you did not, so the doctor took a wild guess on your pressure needs. AHI (events per hour) does NOT tell anybody how much pressure you need. You could have a lot of events and need very little pressure or a lot of pressure. There is also newer info about sleep apnea and weight (often the sleep apnea causes the weight gain, not the other way around). Sounds like your doctor doesn't have all the info he needs to help you.

Personally, I would not wait until the next appointment. Your machine has data, and you have two free options for software - sleepyhead and ResScan. You need to see what your events are (type of events, how long they are, if they are clustered, etc). You also need to see how your leaks are doing. You may do okay with a lower pressure. You may not. But it helps to see the data when making changes.

If you get the software and upload the graphs from a typical night, we can help you adjust your machine to give you better success.

Hi. No I didn't have anything other than the oximeter test which the doctor looked at. The hospital which treats me has a sleep room which I would guess is for titration tests, but I haven't used it.

I often wondered about my weight as well. I went from 168 lbs to 280 lbs in about 8 years. At first I blamed it on my love of all things British when I moved here, but when I had kids and was running around after them, not to mention days out in the country, it continued to pile on me. After reading about weight gain and Sleep apnea I was hoping with successful treatment I would be able to see if it really was my diet or my condition. According to my wife I have had it for a good few years, but I've always lived with the fatigue. I was in the Infantry so I'm used to long hard days with little sleep.

So I can look at the information on the SD card without going back to the doctor? Will they still be able to view the same information when I go in later on? I don't want to delete them, nor do I want to upset them. I'll have a look after work, but I take it these two programs are available to download on the web?

Thanks again for your help.

[zoocrewphoto]

You can download the data without deleting it from the card. So, no problems there. Some doctors get upset if you change the settings without them. But keep in mind that YOU are the one needing the good sleep. The doctor isn't the one using your machine without little or no success. What I would do when you go in next is print some of your graphs so that you can show what you did and how it has improved your treatment. If they can't handle it, too bad for them. My doctor was impressed, and a few months later, I returned with my mom and data for her (from my machine). He reviewed it and prescribed a new machine for her and with better settings. Her old doctor never helped her improve her sleep. She's doing much better.

[rick blaine]

The first thing is: you don't say which part of the UK you're posting from - it can make a difference. In some respects treatment for sleep apnea differs in different parts of the country. It depends on your clinical commissioning group, and which foundation trust hospital you get your treatment from.

As to your various points and questions and implied questions - it's clear you haven't had much explained to you. I will do what I can.

1. It's not your 'API', it's your AHI. It stands for Apnea/ Hypopnea Index - the number of half obstructions and almost-complete obstructions which last 10 seconds or more per hour. If you have 50 per hour, that is classified as severe (which classification starts at 30 and above).

That means, in your case, just about every minute your breathing is impaired.

2. You have been given - on a long-term loan basis - a fixed-pressure machine - because that is the standard treatment pretty much across the UK. (For US readers, the mask is given for free.)

The alternative is an auto-adjusting machine - but if you want one of those, you will have to buy it yourself. In a minute, I'll give you some phone numbers.

3. The main advantage of an auto-adjusting machine is that it only rises to the higher pressures when needed. The rest of the time, it can run at a lower pressure - with implications for comfort and for those who, like you, are more likely to be awakened by higher pressures. (If it makes you feel any better, I am one of those too.)

4. The machine you've been given - the hospital have set what's called the 'ramp start' to 30 minutes. The idea being that when you turn it on, it's at the lowest possible for the machine, and then it gradually rises to - in your case - 10.2cm. For some people, that helps them get off to sleep first, before the working pressure kicks in.

Please note (a) you can change this ramp time, and (b) again, in your case, with an AHI of 50, if it was me, I wouldn't wait that long.

My ramp time is 5 minutes. Goes from 4 cm to 8.5, and from there, on auto.

And long term, people here will tell you, after a while you get used to it, and you don't bother with the ramp start.

5. From what you say, I don't know how they arrived at 10.2. What they do here in Gloucestershire is give the patient an auto-adjusting machine to use for a week. Then you take it back in to the sleep service unit, and they take out the SD card, stick it in their computer, and look for the machine pressure which you were at or below 90 per cent of the time.

That's called your '90 per cent pressure'.

What they also do in about 10 per cent of cases, is have the patient stay overnight in the hospital, in what's called a 'sleep lab'. And one of the things they can get from that is, again, your 90 per cent pressure.

That pressure is what they set in your fixed-pressure machine.

If your doctor or sleep service staff used a formula, I for one don't know what that is.

6. Being overweight can be a factor, but isn't the sole cause of sleep apnea, and there are plenty of people who are of normal weight, or who have a BMI of under 20, who have OSA.

It's a cliche from the older text-books - often called 'the Mr Pickwick Syndrome' - and it is way out of date.

Having said that, it is worth you losing weight. As I'm sure you will know, there are several other health consequences to being overweight.

7. You ask about follow-up. Again, I don't know what the policy is in your area. The machine you have been given, maybe they didn't explain, but it has the ability to 'phone in' your results to the hospital via the cellular phone network.

That way they can see how you are doing - both how many hours you have been using the machine each night, and how close you are to the desired target of AHI under 5. And they may already be reviewing your case, week by week (or some interval).

I don't know if the phone signal in your machine is switched on. Take a look at the front panel. Green radiating bars means it's on. Grey bars means it's off.

As to problems with mask fit - again, I don't know what happens in your area. At my first fitting five years ago, the head physiologist at Gloucestershire Royal (hospital) spent 30 minutes with me, trying on a range of masks. All with the machine running.

And at the annual follow-up, we try on some more - as newer models come out. I now have a collection of four.

And all of that is standard operating procedure in my part of the NHS.

Oh, and the policy here in Gloucestershire is: if you are having any problems - especially in the first three months - give the sleep service a ring, and they will give you a usually very prompt appointment.

Info:

Philips Respironics UK can sell you an auto machine. You will need a presciption form filled in. They're on: 0800 130 0844.

ResMed UK can sell you an auto machine. You will need a presciption form filled in. They're on: 0800 907 7071.

[rick blaine]

The software people are talking about is called Sleepyhead. It's shareware. You can contribute to the guy who wrote it. That's a really nice thing to do.

When you take the SD card out of your machine, the idea is to move the little slider to 'write protect'' before you put it in your computer. Especially if it's a Mac.

Unless prevented, Macs write a small file-organising file to anything you plug into them. And then when you put the SD card back in the sleep apnea machine, the sleep machine's software goes WTF? and refuses to recognise the card.

But Sleepyhead doesn't do anything to your data on the SD card.

And as I said, the Elite comes with cellular phone-in. If it's on, the hospital sleep service already has your data.

Oh, and while we're at it, and to give you some more info that the hospital didn't have time for, watch this:

https://www.youtube.com/watch?v=-gie2dhqP2c

[SleeplessUK]

The software people are talking about is called Sleepyhead. It's shareware. You can contribute to the guy who wrote it. That's a really nice thing to do.

When you take the SD card out of your machine, the idea is to move the little slider to 'write protect'' before you put it in your computer. Especially if it's a Mac.

Macs write a small file-organising file to anything you plug into them. And then when you put the SD card back in the sleep apnea machine, the sleep machine's software goes WTF? and refuses to recognise the card.

But Sleepyhead doesn't do anything to your data on the SD card.

And as I said, the Elite comes with cellular phone-in. If it's on, the hospital sleep service already has your data.

Oh, and while we're at it, and to give you some more info that the hospital didn't have time for, watch this:

https://www.youtube.com/watch?v=-gie2dhqP2c

Wow, thank you for all of the information!

When I get home I'll have a look to see if the machine is switched for cell reception. I live in the North East, but I'm not sure as to how this compares with the rest of the Uk as far as health treatment. I've heard a lot of horrible things about the British NHS so I was a bit worried it would take months to be seen, but within a couple of weeks I was seen, diagnosed, and given a CPAP machine. After my mask fitting the Nurse said I would have a follow up appt. in 6-8 weeks to discuss the treatment so far, and that I should bring the machine and mask to every appt.

When I went in to get fitted for the mask, the nurse adjusted the straps for what she felt was the correct fit, helped me fasten it, and checked I could do the same. They measured my neck, and figured out what pressure to use. The nurse only gave me one type of mask, and it sealed why I was there. I never laid down with it on, but in the chair it was ok. They cycled through a few settings on pressure while I was there. It was still at 10.2, but what ever they did made a couple of the settings very hard to breath. I was able to tell her which one was best. I must admit it was a bit overwhelming on the first visit. New machine, new way of doing things, new lifestyle, etc...

As soon as I got home, I practised putting on the mask again, but that night was horrible. It leaked, I tried adjusting the mask, I tried on my side, on my back, everything I could to stop the leaks. Up till last night I'm still trying to find the best method to stop the leaking. At high pressure all I have to do is move my mouth slightly and the seal is broken. I'm not sure if this will happen with all masks or not, but with this one it does. I can't say I know what I'm looking for in a mask. The last one prior to this was a Gas mask which I slept very easily in when needed. I though this would be the same.

This all seems very daunting. I'm amazed at how many people sleep like this every night.

So should I see if a different mask is key, or keep trying the Quattro FX? Also is a loose fit better than a tight one?

Thanks again.

[herefishy]

Many of us spend our whole lives searching for just the right mask, but for now, you can settle for "tolerable". You need to know that there are 3 kinds of masks, nasal, which covers the nose and rests on the top lip, nasal pillows, which fit inside the nostrils, and the kind you have, which is called a full face mask. These are the hardest to get a good fit with, but it depends on whether you can breathe through your nose if you can wear one of the other 2. Can you? Sometimes you don't think you can, but the pressure opens your nose a bit.
You must not be embarassed by having to wear the CPAP, it's not because you are fat or about anything you can control, and the best way you can get used to having something on your face is to wear it when you are doing something else, like watching tv.
It's very strange that your doc was able to tell that you have apnea from doing an oximeter test, which measures the oxygen you are getting at night, but not your breathing. Using the software with your SD card will give you a much better idea of the extent of your apnea, and then you can begin to approach the correct pressure to control it.
You might want to set your ramp to a shorter time, so you won't be asleep when the pressure increases and wakes you. You only need the ramp if it bothers you to try to go to sleep with the full pressure blowing on you.
Hope this helps, welcome to the forum

[rick blaine]

herefishy wrote:

"It's very strange that your doc was able to tell that you have apnea from doing an oximeter test, which measures the oxygen you are getting at night, but not your breathing."

UK Accident and Emergency departments (US: the ER) now use a finger-mounted pulse-ox reader which not only shows pulse rate and oxygen saturation but also breathing wave form. I know this from recent personal experience.

I assume that the newer home sleep study devices consisting of just the-finger-clip-plus-fat-wrist-watch can do the same. On the principle that breathing pressure differences show up in tiny-tiny-but-still-readable ways in finger-arterial blood movement.

Such is progress. I can remember when the mobile phone was the size of a building brick. And before that, the size of a lunch pail. And all it did was phone.

[herefishy]

Wow, that is amazing.

[palerider]

herefishy wrote:

"It's very strange that your doc was able to tell that you have apnea from doing an oximeter test, which measures the oxygen you are getting at night, but not your breathing."

UK Accident and Emergency departments (US: the ER) now use a finger-mounted pulse-ox reader which not only shows pulse rate and oxygen saturation but also breathing wave form. I know this from recent personal experience.

many people mistake a watchpat for an oximeter...

[BlackSpinner]

Tonight in full view of your kids and wife, set up the machine and watch some tv with them. Explain that it keeps you breathing at night, just like a jet pilot. Get comfortable, watch a movie. Train your brain this is a good thing. Train you breathing to handle the pressure. Little kids do this, so can you. Repeat for a week or more until you sleep the night.

[DeniseR7]

I am supposed to be on a diet and eating 1400 calories. It is not a lot of calories! that said, I have been counting carbs too like a diabetic would. fruits unfortunately have many carbs and I did the same thing, switching to fruits to fill up. Nuts are good - low in carbs, and measure your portions. eeek! I have been falling off the wagon. that said I have lost 20 lbs over a 2 year period and I am trying harder.
I was told 45 carbs in a meal, snacks no more than 30 carbs! look for granola bars with 14 grams of carbs.

losing the weight has not affected my sleep apnea, it seems the same to me.

good luck!

[SleeplessUK]

All good ideas and information. Thanks a lot. I managed to get the data off of the CPAP machine into sleepyhead. My next goal is how to get it uploaded for everyone, and even try to comprehend it all. I also called the hospital about my leaking mask and hardship. They want to see me on Wednesday with the mask and machine. With any luck they'll sort me out.

As I write this I'm putting off the inevitable night ahead. Not sure what to expect, but with any luck I can get a few good hours of sleep. I just don't get it. I used to sleep in a Bradley with shells going off around me and like I've mentioned before even a gas mask. I just can't understand why this is so much harder than that.

When I get a chance I'll see about telling the kids about my new toy. At the moment only the wife knows. Not sure if they can handle Old Ben Vader living in the house!