Help! How to survive a "bad apnea" night

[Frankie84]

Hi,

I have used CPAP for a year now, but during times of high stress it doesn't seem to work for me anymore. I've booked in to see a new sleep specialist but it's still a month away. I've just had a baby and have a 2yo so i need my energy.

I'm hoping someone will have some tips on how to survive the day after a night of increased apneas.

Thank you

A little more about my situation - if you're interested:
My machine was reading less than one apnea per hour. I was originally diagnosed with 16. Not very high, i know, but my symptoms are dramatic; falling asleep at the wheel, sleep paralysis, fibromyalgia-like symptoms, muscle weakness etc. The CPAP had taken all my symptoms away though still not feeling super refreshed. Now my machine is reading 5.3 per hour, slowly increasing. i know it's still very low but all my symptoms have returned. i've had to cancel appointments today because it's not safe for me to drive. I can't guarantee I won't fall asleep. The dr who diagnosed me mentioned something about not getting REM sleep until the last half hour of the night but he never went further into this and just put me on the cpap. I wonder if that is part of the problem and will discuss this further with the new dr. I've been put on the waiting list for cancellations. I believe my machine is set to a pressure of 8. It doesn't feel anywhere near as strong as i need it. Right now, i just need to know how to survive until i can get the help i need. thank you

[BlackSpinner]

If you can tell us what machine you have, people can help you better. We can find the manual for your machine and you can play with the pressure.

[chunkyfrog]

Maybe we can help you figure this out.
Do you know what make/model machine you have?
If you can copy down whatever looks significant off the labels on the case,
someone can help you identify what you are working with.

[kaiasgram]

Hi Frankie,

You're postpartum -- hormone changes may be involved in the changes you're experiencing with CPAP. Progesterone is protective of the upper airway according to Dr. Steven Park, and it's elevated during pregnancy. Then it drops off after delivery. I wonder if this is relevant to what's happening with your AHI right now. I'm also wondering how broken your sleep is at night with new baby. In any case, I think you need the same support and help that all women with new babies need, plus a little extra. Is that possible? You're being totally responsible staying off the road with how you feel and I hope there are family and friends in your life who will help you out until you're able to re-evaluate and improve your pressure settings.

If you're not skittish about it, you can try some adjustments to your pressure while waiting to see your doctor. There is a lot of wonderful reliable help here for learning how to do that if you post your equipment info.

Beyond that, be willing to flex with your expectations of yourself -- when you wake up knowing it's going to be a bad day, call in as much help as possible and scratch anything not immediately necessary off your to do list for the day. And remind yourself that it's temporary, you'll get this worked out and rebalanced again.

Congrats on the new baby, by the way.

[Frankie84]

I have a respironics Remstar pro+ Cflex.

I don't really want to play with the pressure without discussing it with a dr first as i don't know the risks of putting it too high. I was really hoping to find a way to cope with the fatigue until i see her.

[Frankie84]

Thanks Kaiasgram.

I had no idea about the progesterone! thank you. I only have to wake once in the middle of the night and then am woken in the morning. I get one night off a week where I don't have to feed him at all so that's good. Doesn't mean a good nights sleep unfortunately.

My husband has been very helpful if I wake during the night with sleep paralysis or muscle weakness but other than that, i really only have the help on the weekend.

Your post has been very useful and I will take your advice and put all unnecessaries to one side on the very bad days - as I've done today. Looking forward to the 2yo having her nap so I can too. It's a long day.

I am a bit skittish about adjusting my own pressure. as i said before, i'm just not sure what the risks are. you know, what happens if you put it up too high for instance.

thank you.

[robysue]

I have a respironics Remstar pro+ Cflex.

This is not quite specific enough. Can you read through Newbie Guide to PR Remstar machines and tell us whether you've got a System One Pro, an M-Series Pro, or a Legacy Pro?

That will help us help you much more quickly.

[Frankie84]

System one. It's on my profile, I can't work out why it's not showing up

[Pugsy]

Look on the bottom of your machine for a sticker with a 3 digit number and tell us that number.
It may have DS or REF in front of it. On the same sticker is usually an 8 digit number.

Is it a 250 or a 450 model number?

If it is a 450 then it has full data and you can use SleepyHead to get your software reports. I have the information about SleepyHead in my signature line. This would be the machine that you have mentioned in your comments section of your profile.

If it s a 250 (this is the machine you have chosen in your profile) doesn't offer any data beyond hours of use.

If it is a model 450 the go ahead and install SleepyHead and let's get some reports to see if we spot anything that might be contributing to your fatigue...like maybe leaks affecting therapy.

[Xney]

I'm clueless about any hormonal issues that might be possible causes, but your pressure requirements could change over time. The data as the helpful posters above have been talking about would help show a trend or possible things going on.

[Frankie84]

Hi Pugsy,

I haven't check the number (because my baby boy is asleep next to it) but I know it has full data because I've had someone download it before. The machine itself is indicating no large leaks but I'll download that software and see whats going on (once my son is up for a feed). Thanks for the software advice. I've been wanting to get some but didn't know how or what.

I'll post back what the findings say if there's anything new to mention

thanks

[Julie]

Hi, two things - one is that even a little weight gain of <5 lbs can make things worse, if it would apply to you, and the other would be that raising your pressure by 1/2 of an increment, 1 or even 2 numbers at a time, unless your setting is already above 12-15, is highly unlikely to do any damage, and certainly not if you do each of those for just a few days at a time, to get an idea if they help.

[BlackSpinner]

Thanks Kaiasgram.

I had no idea about the progesterone! thank you. I only have to wake once in the middle of the night and then am woken in the morning. I get one night off a week where I don't have to feed him at all so that's good. Doesn't mean a good nights sleep unfortunately.

I am a bit skittish about adjusting my own pressure. as i said before, i'm just not sure what the risks are. you know, what happens if you put it up too high for instance.

thank you.

My OSA started after my last pregnancy. One of the hormones during the last months loosens the muscles & connective tissues so the baby can pass through the birth canal without tearing you apart. It affects all of your body. It takes time for the effects to wear off. For me it felt like I was drawing with mittens on for a year or more.

As far as raising the pressure goes, the only negative effect can be for some people it creates more apneas of the brain type (centrals) - this would show up in your data and you would feel worse, otherwise unless you have major lung problems it does nothing except making it harder to breathe out. Even with your cpap running at full 20cm you can't even inflate a balloon. It is air, only air.

[Frankie84]

Hi Julie. Weight gain is definitely not an issue here.

Thanks for the info BlackSpinner.

I've had a look at my data and it's all very confusing. It's looking like leaks might be part of the problem so I'll adjust the mask tonight. I wonder why the 'average' apneas is more important than the peak apneas? Some nights I've had an average of 8 but peaked at 30.

I don't understand the leaks reading. it has 'leaks' and 'total leaks'. What's the difference. Is there some place i can go to read about understanding the data? I couldn't find that info on the program.

thank you

[Xney]

The respironics machines have two leak lines. The lower line is the "vent" leak rate, which is, the amount of air that's expected and supposed to be leaking from the mask to clear CO2. The amount of that is different for each mask and pressure - the machine can usually guess at it pretty well.

The second line is the "total" leak rate, which is the expected/intentional leaks from venting plus the unintentional leaks.

Total leak = vent leak + unintentional leak

The unintentional leaking (or the total line above it) is what you have to be concerned about getting too high. Above a certain rate, the machine can't detect events well anymore.

If you want to post some photos from the graphs, we can help understand them too. I'll see if I can dig up a link or two for understanding them.