I need some help please

I was diagnosed with sleep apnea two and a half years ago. My initial pressure setting was 10 but after trying cpap and having stabbing gas pain I quit it and tried the oral appliance route. I gave up with the oral appliance this pay December.
I have been consistently using a cpap since December 6th 2013, so not quite a year. This new machine tested me for a month and determined I needed a pressure setting of 8. Even though I have been compliant with the new machine for seven months now I still feel extremely tired. Over the pay seven months I have had days where my ahi is under 2 and I have felt amazing. I have even had four days in a row where my ahi is under two but more often than not my ahi is around 4-5 and more recently it's been a little over 5. There is no rhyme or reason to it. I can wake up and it'll be anywhere from 1 to 5.
I have played with my pressure settings and moved them up to see if my ahi would improve but to no avail.
Before my diagnosis of sleep apnea I was extremely fit. 6 feet 170 lbs. Now I'm about 210. I just started exercising again and eating better two months ago. I stopped exercising and eating well shortly before my original diagnosis off sleep apnea. I'm so tired all day long. My Dr. put me on modafinil about a year ago but now I need more of it to not feel tired.

Also, my dr. Never looks at my sleep data, should he? He just tells me that as long as I am under five he's happy.


It's there anything I can do to improve my ahi. I would love to be able to keep it under 2 constantly

Hi - click on the User Ctl Panel under the main logo, then go to Profile and fill in the full name and model # of your machine (the model may be underneath, but don't look til humidifier water's been emptied!), plus the type and name of your mask (as masks can make such a difference). That way we'll know automatically what equipment you have when you post (as per blue notes under everyone's postings) and have something to go by to help advise you.

Do you use software to track your progress, or only look at the screen? Do you think you could be a mouth breather when sleeping, losing therapy air that way? Are you getting enough hours of sleep? How about GERD (acid reflux) overnight? Are you on medication, and if so what kind? Have you tried to lose the new weight?

araris:

You may get some better answers if your register and post your equipment list.
There is a link in my signature block that explains how to do it.

With what appears to be a diagnosis of obstructive sleep apnea, gaining 40 pounds won't help either with the apnea or the feeling tired.

For your own records, you should get a copy of your sleep study so that you can see what kinds of apneas you were having.
The doctor who prescribed the study can get you one or the sleep lab where it was done can also.

You should also have a copy of the prescription for the CPAP machine. That way, you can purchase any supplies at a DME that is convenient to you. You are not limited to the one from which you purchased your machine.

An AHI of under 5 is considered well treated. Some folks don't feel well until they get their number down much lower. You may be one of those.

When we see the actual model number of your CPAP machine, it will be possible to recommend appropriate software to allow you to see how your treatment is going. If your machine is built by Respironics, the machine type is printed on the bottom it will look like DS250 or DS260 or something like that.
(remove the humidifier tank before turning your machine over!)
Hopefully, the number part is higher than 400, indicating that efficacy data is recorded. Otherwise, it only records hours of use. For ResMed machines, the serial number in on the back and others can comment on its ability to record efficacy data as I am not familiar with the ResMed line.

I don't believe serial #'s are meant to do anything but identify an individual machine for the manufacturer's purposes... they are not model #'s and those are what would help us to know what machine is being used.

I have updated the information. Yes I use sleepyhead. I can post images on here later

My cpap is not showing up even though I have selected it.

I use a remstar auto cpap with c flex

That's because it's a discontinued (by Cpap.com and most others) machine - I have it too, but keep it for a back-up, not my everyday one. It will give data, if not as detailed as e.g. the much new Autoset S9 though. I think the M series came in between yours and the Autoset and its formal name was the Legacy, but we all just call it the 'Tank'!

You didn't answer some of our Q's (see my ? note) re things that could be making a difference... more weight might equal a need for higher pressure (or a new diet .

What model number ? 3 digit number on the bottom of the blower unit with probably DS or REF in front of it.
The Remstart part of the name...disregard it. They call everything Remstar and have for 10 years or more.
Some links to the older discontinued machines are broken and you may have chosen one of the older machines by mistake.
Tell us that 3 digit model number and then we can tell for sure you either choose the correct machine and/or if that link is broken we can explain how to word it in your comments section. See how I have my back up machine shown.

The only AUTO Respironics cpap that I know of is the very first M Series Auto CPAP with Cflex that came out in 2007. That model was my very first machine...model 500 or 510 I think it was.

Pugsy - My "Remstar Auto cpap with Cflex" has model #101746 on the bottom (no 'Ref' #) and it is not an M series (which came out later). It is the Tank, of which I believe I actually got the last one from Cpap.com before they closed it down... and everyone else wanted it! It's a great machine for which I used Encore, and I will probably have it forever. I first (in '05-6) got it from the local dealer, who replaced it once or twice as it was never 'new' to me ($@*&)+#) but my ex-'s insce. was paying so I had no (known, at the time) choice... then I found the forum, lost the DME and have been happy ever since. The M-series definitely came later.

Yeah, I forgot about the Legacy series autos having CFlex

I think it was with the M series models that Respironics started with the 3 digit number for model number.

I still would like to figure out exactly which machine model is being used so that I can offer appropriate software instructions. If it says "auto" somewhere on the machine it's going to have some data available for evaluation.

Julie wrote:Hi - click on the User Ctl Panel under the main logo, then go to Profile and fill in the full name and model # of your machine (the model may be underneath, but don't look til humidifier water's been emptied!), plus the type and name of your mask (as masks can make such a difference). That way we'll know automatically what equipment you have when you post (as per blue notes under everyone's postings) and have something to go by to help advise you.

Do you use software to track your progress, or only look at the screen? Do you think you could be a mouth breather when sleeping, losing therapy air that way? Are you getting enough hours of sleep? How about GERD (acid reflux) overnight? Are you on medication, and if so what kind? Have you tried to lose the new weight?

Sorry. I know I am a mouth breather, so I tape my mouth shut every night. It's the only way I can tolerate the cpap because if I don't I'll be farting and belching like a wombat in an hour of using the machine.
I'm averaging over six a night. I would like to sleep more but many times I wake up and stare at the ceiling. I have studied good sleep hygiene and I try to go to bed at roughly the same time every night. The problem is that I will have bouts of insomnia around four times a month and it throws off my sleeping pattern. I know that I should wake up and go to bed at the same time every day. I know that I should exercise and eat well and not eat certain foods before bed. No new meds, but I am on Modafinil and simavastatin... though I stopped the statin about a month ago to see if it was the cause of my excessive daytime sleepiness... I drink coffee in the morning, but no caffeine for the rest of the day. I do not drink pop or tea.
I am trying to lose weight now. I have started a paleo diet, but I still break into old habits. Next week, I'll be moving into an apartment which will help with the dieting. I have been living with my parents for the last two years because of a divorce.
I definitely do not have GERD Thankfully.

https://drive.google.com/folderview?id= ... sp=sharing

As you can see I have played with my settings to see if another pressure would be better for more

Also, would a better machine: vpap, apap, or just a better machine help me feel more rested?
Let me know If you need anything else?

A lot of sleep doctors are poor in their practice. They just coast along.

Your doctor isn't taking your problem seriously. You need a new sleep doctor.

Some items.

0. It turns out that certified sleep centers don't have consistent assessment procedures. In a 2008 study they found that 22% didn't have a written protocol. If you were running a factory like this you would lose your ISO9000 certification. The sleep medicine profession seems to involve a lot of clowns.

http://www.aasmnet.org/resources/clinic ... 040210.pdf

1. Make sure you have a full data recording CPAP.

2. You could be having Upper Air Way Resistance Syndrome which means you have Respiratory Effort Related Arousals (RERA). These aren't reported by your machine since they aren't Apneas. You could be waking up and your machine will say your AHI is fine.

http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3 This article was published in 2011.

3. AHI index is less than it seems. I got an oximeter for my machine. it cost $1500. I have occasions where my SpO2 oxygen content in my blood drops and it will drop for a while, maybe the machine will show an AHI or maybe it won't. My AHI index is great. In other cases I will have the machine tell me I have an event. I don't see SpO2 drop.

Remember that the end goal of the CPAP and the stuff on your face is to not be woken up so you can get the sleep you need in both hours and type. An intermediate goal to accomplish this is to make sure you have oxygen so you aren't waking up.

AHI and the other stuff are often inferred events and it really doesn't mean anything if you are waking up or feel lousy in the morning.

4. Cash flow is a big part of the sleep business. This is a very interesting article about the whole thing.

http://www.kaiserhealthnews.org/stories ... udies.aspx

Just be on the alert. I had a friend who was at one sleep center and was diagnosed with apnea, another center said that he didn't have any apnea at all or indicator that he would have it. The friend had a problem of falling asleep so why he was tested for apnea is not clear.

5. Some sleep advice may not be based on scientific evidence. For example sleep hygiene advice may be valid, I just haven't found any scientific study supporting it. If you read "Science" magazine, publication of the American Association for the Advancement of Science, of which I am a member, you will read occasionally of some treatment that was in medical practice and when scientifically reviewed didn't have any real effect.

The 8 glasses of water is a famous example of something someone just thought was a good idea and was passed along from book to book. A researcher tried to track down the original study and found the first author who wrote it and it was just put in the book as a good idea.

See if you can find a study that backs up any claim you hear of.

In summary:

1. Your pressure could be wrong. The sleep study not valid.

2. You could be having RERAs and you sleep doctor isn't even aware of this.

3. Make sure you have a fully recording machine and an oximeter.

4. You could have another medical problem.

5. Get a better sleep doctor. This week I talked to my physician and he is researching to get me a real sleep doctor and not the usual sleep doctor. I have a real doctor with an independent practice who cares about his patients. So he is going to look into it. I don't have a doctor in some corporation who is processing patients in a form of factory medicine.

Good luck.

araris wrote:I was diagnosed with sleep apnea two and a half years ago.

Any idea of how bad the untreated sleep apnea was on the diagnostic study? Even a term like "severe" or "moderate" or "mild" enough.

My initial pressure setting was 10 but after trying cpap and having stabbing gas pain I quit it and tried the oral appliance route. I gave up with the oral appliance this pay December.

Why did you give up on the oral appliance? Was it clearly ineffective? Or was it causing problems with your teeth or triggering pain?

I have been consistently using a cpap since December 6th 2013, so not quite a year.

Really it's more like you've been papping for a bit more than 1/2 of a year.

This new machine tested me for a month and determined I needed a pressure setting of 8.

What machine are you using?

The software in your signature is for a Puritan Bennett Sandman machine, but I was unaware that the Sandman had even a limited auto mode for the machine to determine what pressure you need.

In other words, your description of the machine is for either PR System One Series 50 CPAP Pro with AutoIQ or the newer PR System One Series 60 CPAP Pro. And the GoogleDocs data you shared seems to be from SleepyHead not Sandman.

Even though I have been compliant with the new machine for seven months now I still feel extremely tired. Over the pay seven months I have had days where my ahi is under 2 and I have felt amazing. I have even had four days in a row where my ahi is under two but more often than not my ahi is around 4-5 and more recently it's been a little over 5. There is no rhyme or reason to it. I can wake up and it'll be anywhere from 1 to 5.

AHIs to tend to bounce around a bit for some people. But an upward trend that lasts for several weeks or months is something to think about.

I have played with my pressure settings and moved them up to see if my ahi would improve but to no avail.

Dial winging is often less efficient that we want to believe, particularly if you make a lot of frequent pressure changes without knowing what exactly it is that you are trying to fix.

Question: After changing the pressure, how long do you typically leave the new pressure in place before you change it again?

Question: Have you also been frequently changing the comfort settings? Comfort settings are the things like C-Flex+, the humidifier setting, and the temperature setting if you are using a heated hose.

Before my diagnosis of sleep apnea I was extremely fit. 6 feet 170 lbs. Now I'm about 210. I just started exercising again and eating better two months ago. I stopped exercising and eating well shortly before my original diagnosis off sleep apnea. I'm so tired all day long. My Dr. put me on modafinil about a year ago but now I need more of it to not feel tired.

The modafinil script was written when you were using the oral appliance??

As you continue to exercise and eat better, you may start feeling better. There's more to feeling energetic than just getting good quality sleep.

Also, my dr. Never looks at my sleep data, should he? He just tells me that as long as I am under five he's happy.

This is not uncommon. *sigh*

But if there is something in the data that you are particularly concerned about, you may want to bring in a hard copy of the data with you to an appointment with the sleep doc and show it to him and tell him what parts are concerning to you.

It's there anything I can do to improve my ahi. I would love to be able to keep it under 2 constantly

It is a process. But with some work, it's not an unreasonable expectation that you should be able to keep your AHI below 2.5 most of the time.

araris wrote: I'm averaging over six [hours of sleep] a night. I would like to sleep more but many times I wake up and stare at the ceiling. I have studied good sleep hygiene and I try to go to bed at roughly the same time every night. The problem is that I will have bouts of insomnia around four times a month and it throws off my sleeping pattern.

Several questions about your sleep patterns and your insomina:

Question: When you say you have "bouts of insomnia around four times a month", what do you mean? How long is each "bout"? How often do you have 3-4 days in a row of what feels like insomnia?

Question: Are there identifiable trigges for your insomnia? In other words, does stress play a role in how bad the insomnia is?

Question: How would you describe the insomnia? Is it bedtime (sleep onset) insomnia where you can't seem to fall asleep in a reasonable amount of time? Is it sleep maintenance insomnia where you keep repeatedly waking up throughout the night? Is it wake too early insomnia where you wake up early than you want to and can't seem to get back to sleep for the whole rest of the night?

Question: Other than trying to tighten up on sleep hygiene, have you ever done anything to try to treat the insomnia? If so, what have you done and how well did it work (or not work)? Have you ever talked to a doctor about the insomina as a separate issue from the sleep apnea?

araris wrote:https://drive.google.com/folderview?id= ... sp=sharing

As you can see I have played with my settings to see if another pressure would be better for more

There's nothing in the data you posted that screams: FIX ME by dial winging. The one night of detailed data shows a lot of restlessness after the wake at 2:20. The centrals scored during the short session centered around 2:40 are likely sleep-wake-junk (SWJ); it's not clear you ever got soundly back to sleep at that point. Hence the apneas and hypopneas scored during that session are probably not real. The string of events at the beginning of the last session are probably sleep onset or SWJ as well.

In other words, if this data is typical, you need to focus on trying to minimize the amount of time you are AWAKE during your desired sleep period.

Also, would a better machine: vpap, apap, or just a better machine help me feel more rested?
Let me know If you need anything else?

To paraphrase Sludge, you first need to know what the problem you are trying to fix is.

If your AHI is consistently below 5 and you are getting six hours of sleep and you report several bouts of insomnia each month, the problem with your sleep may not be undertreated sleep apnea. It may simply be bad sleep caused by the insomnia. And working on fixing the insomnia may do more good for you in the long run than dial winging and changing machines. In other words, as long as the insomnia is an issue, dial winging and changing machines might not actually change a thing in how you are feeling.

araris wrote:I have updated the information. Yes I use sleepyhead. I can post images on here later
My cpap is not showing up even though I have selected it.
I use a remstar auto cpap with c flex

actually, according to the picture you posted, you have a "PR system one REMstar 60 series plus cpap machine with c-flex"