Newly Diagnosed, Given a Respironics REMstar Plus C-Flex

[cherylgrrl]

A couple questions:

After reading the boards, I'm concerned that I was pushed into a CPAP machine choice that might not be the best. The medical equipment supplier offered me a choice of 2 machines. When I asked about others, I was told these were both new and other machines on their website were older and I wouldn't want them. I picked the one that seemed sturdier and had the rotating coupler for the hose on top, instead of a hose coming out of the back of the machine. LOL! I asked if the machine could be traded in if it doesn't work for me, and the answer was no, only a mask could be returned but the machine can't be returned. That said, this Philips Respironics REMstar Plus C-Flex seems to work well. I've used it 2 nights so far with a ResMed Mirage Quattro full face mask and have slept well. My pressure is 11. I used the ramp function the first night but not the second. I set the C-Flex to 3 (maximum reduction in initial exhalation pressure). Any feedback on whether this is a good machine or not?

I'm very committed to using this 100% of the time because my sleep study results were pretty bad: AHI 107, oxygen saturation down to 77%. I don't feel terrible, but I am definitely draggy in the morning, sleepy in the afternoon, and have low energy. I was hoping to spring out of bed the first morning or the second feeling like a new woman, but nothing dramatic so far. In fact, it's 7 pm now and I really feel like I'm ready to go to bed. From reading others' accounts, it sounds like it might take weeks or even months... but since I'm adjusting to using the machine and mask so well, might I expect to feel better sooner than that?

At least my husband is happy... no more snoring!

Thank you everyone who is posting in this forum. I can't believe how helpful this is!

- Cheryl

[sleepycarol]

Unfortunately the machine you were given gives no useful data, only hour many hours per day the machine has been used for compliance (many insurance companies want to know that the machine is being used).

It is a straight cpap. It can be used for treatment but you and your doctor have no way of telling if your pressure is adequately treating your sleep apnea. I would try to change it out for a fully data capable machine.

Read the cpap wiki (yellow lightbulb) up at the top for useful info.

[jweeks]

I'm very committed to using this 100% of the time because my sleep study results were pretty bad: AHI 107, oxygen saturation down to 77%. I don't feel terrible, but I am definitely draggy in the morning, sleepy in the afternoon, and have low energy. I was hoping to spring out of bed the first morning or the second feeling like a new woman, but nothing dramatic so far. In fact, it's 7 pm now and I really feel like I'm ready to go to bed. From reading others' accounts, it sounds like it might take weeks or even months... but since I'm adjusting to using the machine and mask so well, might I expect to feel better sooner than that?

Cheryl,

Please don't be disappointed at this point in the game. You have a pretty severe case. An AHI of 107 means that you were waking up on average once every 34 seconds. That means two things...(1) your sleep system is probably pretty messed up, and (2) your body has invented all kinds of coping mechanisms. It took you years to get to this point, so it is going to take a little while to get back to normal. You can get back, and you will as long as you get dialed into the right treatment and keep using the machine.

Item #1 is that your brain doesn't really know how to sleep. Just like a newborn baby, you are going to have to learn how to sleep all over again. Before you can do that, however, you have to unlearn waking up twice a minute. This can take some time, maybe a few weeks.

Item #2 is that you likely have a huge sleep debt. If you haven't slept more than 34 seconds at a time for a few years, that means you have not gotten any deep sleep (the restorative stuff), and almost no REM sleep (the part that affects mood and memory). You are way behind in sleep, and it is going to take a while to get caught up. 3 months might be a good guess. In fact, you could probably sleep for 7 days straight and still need more sleep. Getting all the sleep you can should be your top priority right now. Take vacation if you need to.

Item #3 is that your body is currently finely tuned to work as best as it can with almost no good sleep. Once you do get past #1 and start getting quality sleep, your body might start waking up after 2 or 3 hours. The reason is that 2 or 3 hours of good sleep is far more than you have been getting over the past few years, so your brain will think it is done for the night and be ready to get up and go to work. This can be really frustrating. This was my main challenge, and it took about 6 months for me to get past it. Rather than fighting it, I used the extra time to watch TV and watch concert videos until I got tired again.

Item #4 is the long term effect of no REM and low oxygen levels on your brain. What it does is dull your senses, makes you think a bit more slowly, makes you irritable, and it can cause depression. The net effect is that problem solving can be hard. Being a new CPAP user, you have all kinds of new problems to deal with, and all kinds of changes to adapt to. Unfortunately, the brain effects makes both of these tasks very hard. Some folks call this "brain fog". The good news is that the fog clears up pretty quickly once you start getting some REM sleep and if you can keep the O2 levels up.

This stuff is all normal, especially for someone with the kind of AHI and O2 levels that you have. You have almost the same numbers that I had (my O2 was down in the high 60s). Treat this as all part of the journey. It is worth the effort. I was there 4 years ago, and I can tell you that the past 4 years have been the best 4 years of my life. It is amazing what you can do when you are awake and have your energy back.

One thing you can do to help is to purchase and use an Oximeter. A lot of folks here (including myself) have a CMS-50. These are actually pretty inexpensive these days. This will let you monitor your O2. Since your current machine doesn't give data, the O2 number will at least tell you if you are getting the right oxygen, and it will show you any "desats" (places where the O2 drops because of apnea events). If you have desat events more than about once per hour, then you might need to see your doctor again. If you cannot get your O2 up above 92%, you might be a candidate for using oxygen with your CPAP. In my case, my O2 is rock solid at 98% when I sleep, which amazes me. I am also greatly comforted by knowing for sure that it is OK because I monitor it once a month.

-john-

[cherylgrrl]

Thank you for the quick responses. What a great community! This is a very challenging condition and unfortunately the doctors, paraprofessionals, and equipment suppliers don't do a very good job of education. This is probably why compliance is such an issue and so many people give up. John, the commentary on how long it will take to come back from my sleep debt was very helpful.

When I got my prescription, I was told with a *wink wink, nudge, nudge* that if I had problems adjusting to the straight CPAP only then could I be considered for a BiPAP. Sounds like it isn't just a BiPAP, but also the monitoring that I need. And yes, I'll be happy to invest myself if I can't get the right things through insurance. This is my life, after all.

Just about to go to bed for night #3...

- Cheryl

[zoocrewphoto]

I am new to this also, and I have had been pretty lucky with some of it, but do now wake up more than I used to. I tell my friends and coworkers that I am learning to sleep again. Who knew it would be this challenging to learn how to sleep?

I can tell though, that my quality of sleep is better, so even if my quantity is lower, I do feel better. My numbers weren't as bad as yours though, and I do have some advantages. My doctor has sleep apnea himself. So, not only does he truly understand the condition from a patient's point of view, but he knows how useful the data is. So, he prescribed a machine that would do what I needed (automatic range of pressures) AND he picked a machine that uses the software that he prefers so that he can look at the data. I had my 6 week followup last week, and I took some prinouts of data that I was able to get using ResScan (I found the link on this forum). He was surprised and happy as he knew this is a valuable tool for patients. One, we can monitor our data, work out problems easier, and we can also make an appointment when we see that it just isn't working right. But two, having this information gives us ownership of our medical condition. We have more incentive to keep going with it and make it work for us.

Probably the worst part about cpap treatment is compliance. If the doctors and DMEs don't help make it work for us, then we are on our own. And we can't do much if we don't have data or reinforcement that it is working. I have been at this for 7 weeks now. I do feel better overall. I have more energy, and I know I feel better. But I can honestly say I have only had 3 wow nights, and one of them was the sleep study. Being able to view my data and work on it, helps me to know that it is working well and getting me where I need to be.

[lazer]

....One thing you can do to help is to purchase and use an Oximeter. A lot of folks here (including myself) have a CMS-50. These are actually pretty inexpensive these days. This will let you monitor your O2....

-john-

Hi John, Curious about this. Would one of these be the correct ones: http://www.ebay.com/sch/i.html?_nkw=pul ... +cms+50+dl

I see they run on AAA batteries and last up to 30hrs. I assume you would just need to get a rechargeable battery setup to make this efficient OR is there another type of Oximeter you recommend.

[jweeks]

....One thing you can do to help is to purchase and use an Oximeter. A lot of folks here (including myself) have a CMS-50. These are actually pretty inexpensive these days. This will let you monitor your O2....

-john-

Hi John, Curious about this. Would one of these be the correct ones: http://www.ebay.com/sch/i.html?_nkw=pul ... +cms+50+dl

I see they run on AAA batteries and last up to 30hrs. I assume you would just need to get a rechargeable battery setup to make this efficient OR is there another type of Oximeter you recommend.

Hi,

Yes, that would do the trick. When I got mine, I went to a web site called the Pulse Ox Store. I forget the exact URL. There are a number of versions of the CMS-50. I have the E model that has a built-in rechargeable battery (you plug it into USB to charge it). The downloading is a little awkward, and I end up having to tape it to my finger. They do have wireless units, and they also have a wrist version that has a very small finger probe. The price is great on the E-bay auction. Despite being inexpensive, these appear to be good units. I have compared mine to the readings at the doctor's office, and it is spot on.

-john-

[lazer]

....One thing you can do to help is to purchase and use an Oximeter. A lot of folks here (including myself) have a CMS-50. These are actually pretty inexpensive these days. This will let you monitor your O2....

-john-

Hi John, Curious about this. Would one of these be the correct ones: http://www.ebay.com/sch/i.html?_nkw=pul ... +cms+50+dl

I see they run on AAA batteries and last up to 30hrs. I assume you would just need to get a rechargeable battery setup to make this efficient OR is there another type of Oximeter you recommend.

Hi,

Yes, that would do the trick. When I got mine, I went to a web site called the Pulse Ox Store. I forget the exact URL. There are a number of versions of the CMS-50. I have the E model that has a built-in rechargeable battery (you plug it into USB to charge it). The downloading is a little awkward, and I end up having to tape it to my finger. They do have wireless units, and they also have a wrist version that has a very small finger probe. The price is great on the E-bay auction. Despite being inexpensive, these appear to be good units. I have compared mine to the readings at the doctor's office, and it is spot on.

-john-

Thanks John. I'm not sure yet if one of these would be useful for me personally yet but I'm always interested in ways to monitor my progress and health that are affordable and hopefully this will help the OP a bit in deciding if this would be beneficial to them.

[cherylgrrl]

Just a question about using the oximeter... would you use it sometime during the night when you happen to wake up? I assume that the real test would be what your oxygen saturation is while sleeping.

Thanks,
Cheryl

....One thing you can do to help is to purchase and use an Oximeter. A lot of folks here (including myself) have a CMS-50. These are actually pretty inexpensive these days. This will let you monitor your O2....

-john-

Hi,

Yes, that would do the trick. When I got mine, I went to a web site called the Pulse Ox Store. I forget the exact URL. There are a number of versions of the CMS-50. I have the E model that has a built-in rechargeable battery (you plug it into USB to charge it). The downloading is a little awkward, and I end up having to tape it to my finger. They do have wireless units, and they also have a wrist version that has a very small finger probe. The price is great on the E-bay auction. Despite being inexpensive, these appear to be good units. I have compared mine to the readings at the doctor's office, and it is spot on.

-john-

[Pugsy]

There are pulse oximeters that record throughout the night while we are sleeping. Those are what we are talking about when we say use a pulse ox at night. These cost a little more than the standard spot check pulse oximeters.

There are several models..come with software so you can hook up to the computer and see what went on all night.
You can find some models here along with examples of software. Have to be careful with models...not all record data all night.
I have the CMS 50DPlus..finger tip model. Suits my needs for random over night checking. I don't need or want to use it often.
http://www.pulseoxstore.com/Downloadable-Pulse-Ox.html

They can be found a little less costly online or from China. I opted to buy from the above link because the guy who runs it is a forum member and the support to get the software up and running is there for me if I need it. He makes sure you get it right and his instructions are clear and easy to follow. Plus if I have any issues...I know he will make it right. It was worth the little extra $ to have that security.

[Suzjohnson]

The model in the E-bay link is not a recording model.

Suz

[lazer]

There are pulse oximeters that record throughout the night while we are sleeping. Those are what we are talking about when we say use a pulse ox at night. These cost a little more than the standard spot check pulse oximeters.

There are several models..come with software so you can hook up to the computer and see what went on all night.
You can find some models here along with examples of software. Have to be careful with models...not all record data all night.
I have the CMS 50DPlus..finger tip model. Suits my needs for random over night checking. I don't need or want to use it often.
http://www.pulseoxstore.com/Downloadable-Pulse-Ox.html

They can be found a little less costly online or from China. I opted to buy from the above link because the guy who runs it is a forum member and the support to get the software up and running is there for me if I need it. He makes sure you get it right and his instructions are clear and easy to follow. Plus if I have any issues...I know he will make it right. It was worth the little extra $ to have that security.

Thanks for clearing that up. I was way off..

[archangle]

I have the CMS-50 D+, which records. There's also a CMS-50D, which does not record. Don't confuse the two.

You must have a recording pulseox to be useful for CPAP.

The CMS-50 D+ works fine. Be sure and get the PLUS model. Some of the later models have some better features.

Personally, I don't like the models with a built-in rechargeable battery. I have too many devices with built in rechargeable batteries that don't work any more. Rechargeable AAAs can always be replaced.

[cherylgrrl]

Thanks Pugsy and Archangle, I just ordered my recording pulse oximeter! I think it will be motivating to (hopefully) see some great oxygen saturation numbers as I move forward with my therapy, and something to discuss during my followup visit to pulmonologist. Thanks everybody for your very helpful advice!

- Cheryl

[Suzjohnson]

Good for you Cherylgrrl! You won't be sorry. If your computer doesn't do the small disk that comes with the oximeter, mine doesn't, go to the pulseoxstore.com. Look in the downloads section and you can find the correct software to download directly to your computer. I'll have to double check but I think if you are running Windows 7, you will want version 2.1. If this is wrong, I'll be right back with a correction. Faulty memory circuits.

Suz