Any Suggestions for frustrated newer CPAP User

[sleepyinvegas]

Hi Everyone this is my first post so it may be significantly more verbose than needed but I am searching for some answers that I don't seem to be getting from my Doctor or DME. So basically here is my back story. I started in January of this year speaking with my doctor about a complete lack of energy and brain fogginess that I have been experiencing for some time. My doctor initially gave me a B12 shot told me to lose some weight and get more exercise. At that time I wanted to complete and total physical just to make sure that everything was okay. After approximately a month and a half of going through the physical process various appointments for ultrasounds lab tests etc. I was able to see my doctor again and short of some minor issues I was given a clean bill of health. I still continued to express my concern for my lack of energy on a daily basis and my need to constantly drink large amounts of espresso and take Claritin with Sudafed on a daily basis just to maintain a reasonable energy level so that I could accomplish my most basic tasks. Now keep in mind that my profession requires a high level of mental acuity. Sadly my mental acuity has not been anywhere close to where I like to be. After four more appointments with my doctor I was finally scheduled for a sleep study at the end of February. The initial sleep study diagnosed me with mild obstructive sleep apnea. My original AHI from the sleep study was 12. My means oxygen saturation was 92% with an nadlr 81%. Finally I had no significant periods of limb movement. My original sleep study was for a total of 5.6 hours of sleep. After all of this I was jerked around by my primary doctor and my ENT for several weeks and finally had another sleep study scheduled for my titration. After my titration was completed I was prescribed 7cm of water. The day after my sleep study I felt absolutely incredible. I have not felt that good since my early 20s. my mind was firing on all cylinders and I had tons of energy. I swam 30 laps in the pool fixed breakfast for my family a cleaned half of my house. I was incredibly excited about going on the CPAP. It took another month to finally get An appointment and I was given a bare-bones respironics system one. I have done a fair amount of reading on this site previous to receiving my equipment and the day before my appointment to pick it up I did call to ask what equipment I would be getting. I expressed a desire for machine that gave me full data capability as well as an APAP function. the representatives of the DME told me that I would be receiving a very good machine but was evasive as to what type or model. I however as usual was incredibly tired and desperately wanted to get the incredible feeling and energy that I had the day after my titration sleep study saw when he gave me the low end machine I set aside my worries and just went with it. I took on the machine and set up exactly as I had been shown with nasal pillows And went to bed exactly as I had the night of the sleep study. sadly the next day I did not feel good again. I figured this was probably due to the fact that it was my first night home with the CPAP. I gave it several weeks for my "sleep deficit" to be repaired during which time I discovered I was having problems with nasal congestion so I swapped over to a full face mask that was given to me the day I picked up my machine. I still continue to not feel any better even though I was using the CPAP nightly for at least six hours. After weeks of using the CPAP I still did not have my energy and mental acuity back. I finally got fed up. I called the DME and started complaining about my lack of energy. I explained the situation to the customer service representative at the DME and she stated that I potentially could have a problem with my prescription because the full face mask would generally require 1 cm of water higher pressure on my prescription with the nasal pillows. I asked if this was a setting that I could change that I could get the energy that I so desperately want. I was told I could not make the change and I have to set an appointment two weeks away to have the pressure adjusted. I again inquired about my machine and whether I could have an APAP with data logging capability. they again try to talk me out of my request for this saying that it was unnecessary with my mild sleep apnea. I obviously was not happy. I finally went in for my appointment and continued to explain the issues that I was having to sleep technician that I met with for my appointment. the sleep technician and I decided to up the pressure by 1 cm water and she did finally switch me out to a new machine. An FP icon + I was incredibly happy to have new machine and went home to start the process over. I now have had the machine for several weeks with the new pressure. Sadly now after several weeks of watching my data and averaging a AHI of 3.64 while hoping to feel better I still am not where I would like to be. I am slowly moving toward a level of energy that I feel is appropriate but it is nowhere near the energy I felt the day after my sleep titration. I'm hoping that you can give me some advice as to whether I should talk to the DME about next. Any help that you can offer will be greatly appreciated. Thank you in advance for all of your help and all of the knowledge that you have put forward in this website.

[Pugsy]

How many hours of sleep are you getting with the machine?
Are those hours of sleep fragmented with wake ups? If so, do you know why?
Are you taking any meds of any kind?

In terms of the software reports....are you using the software to see the detailed reports or just getting the information off the LCD screen?
How is the leak rate?
Did you know you can use SleepyHead software with your machine? It isn't quite as comprehensive as the ResMed or Respironics machines but it does a decent job showing the basic data your machine gathers.

Welcome to the forum. Sounds like you had the "miracle" after the titration sleep study and it's been elusive for you to get it on your own. You aren't the first to have that happen. It's a struggle for sure and no easy answers.

[sleepyinvegas]

I am currently using the Sleepyhead software I am averaging six and a half hours per night and it is mostly un-interuppted. I am taking Claritin-D over the counter on a frequent basis but I generally take it early in the day to boost my mental acuity. You put it right I did have the miracle and it's been gone since and I would love to just be 80% of that first day but I'm really closer to 50%.. I am trying to paste my stats from sleepyhead for the last 27 days.

CPAP Statistics
27 days of CPAP Data, between Tue Jul 22 2014 and Sun Aug 17 2014
Details Most Recent Last Week Last 30 Days Last 6 Months Last Year
CPAP Usage
Average Hours per Night 07:54 06:46 06:35 06:35 06:35
Compliance 100% 100% 96% 96% 96%
Therapy Efficiacy
AHI 3.54 2.83 3.64 3.64 3.64
Obstructive Apnea Index 1.27 1.10 1.53 1.53 1.53
Hypopnea Index 2.28 1.73 2.11 2.11 2.11
Flow Limitation Index 10.00 6.37 3.56 3.56 3.56
SensAwake Index 0.00 0.00 0.00 0.00 0.00
Leak Statistics
Average Leak Rate 0.26 0.72 1.25 1.25 1.25
90% Leak Rate 1.00 1.00 4.00 4.00 4.00
% of time above Leak Rate threshold 0.00% 0.00% 0.00% 0.00% 0.00%
Pressure Statistics
Average Pressure 8.00 8.00 8.00 8.00 8.00
Min Pressure 8.00 8.00 8.00 8.00 8.00
Max Pressure 8.00 8.00 8.00 8.00 8.00
90% Pressure 8.00 8.00 8.00 8.00 8.00

[Pugsy]

Large leak territory for the F & P Icon is around 60 L/min when reporting total leak. I think SleepyHead defaults the red line for excess leak to suit the Resmed machine at 24 L/min. You might want to change the red line mark to 60 L/min if you haven't done so already. Though it may not be all that important since even with it at 24 L/min you don't seem to have a huge amount of leaks.

When you look at your detailed reports do you see your events being clustered at all?
Can you post an image of a detailed nightly report? So we can see when the events happened during the night?
If you don't know how we talked about it here in this thread with some examples.

Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

Your AHI is of course technically within the less than 5 acceptable range but maybe you are having clusters of events that might be impacting how you feel. I have clusters in REM stage sleep where my OSA is much worse. So I had to adjust the pressure a little to break up the clusters.

What is your primary daytime symptom that you wish to improve upon? Is it your energy level?

[Julie]

Are you still taking the Sudafed? It can certainly make you feel sleepy. Some of us have found that using C(or A)pap clears up nasal or allergy issues by itself, and no longer need to address them with meds.

[sleepyinvegas]

Thank you for the Replies! I am attempting to post pictures based on the instructions. We'll see how it goes. As for the Sudafed I have been free of it for nearly a week and I am feeling pretty good. I don't have quite the mental clarity I was looking for but I am glad to be rid of another chemical dependency. I now want to start working on getting rid of the coffee addiction but that one is a bit harder.

[Pugsy]

You do appear to have some clustering of events especially in the wee hours of the morning. Makes it suspicious for REM stage sleep related events. It's common to have our OSA be a little "worse" or need a little bit more pressure during REM stage sleep and the wee hours of the morning is when we typically have more REM stage sleep. The stages come more frequently and last longer at that time.
Might also be related to supine position.

Your AHI is reduced by the periods of time when not much of anything is going on but during the periods with the clustering things get a bit ugly. You likely need more pressure during those periods of time ....be it from REM stage sleep or supine sleeping.

Are those clusters affecting how you feel during the day? That's something we can't tell with any certainty but it is a possibility. It's possible that along with those events or flow limitations that little arousals occur even though you may not remember the arousals.

If you were using apap mode then the machine would most likely increase the pressure during those periods where you see the clusters of events.

While we don't expect to eradicate all apnea events with cpap therapy we do like to reduce the number and in this case break up the clusters because they might have an impact on how we feel or affect sleep quality in general.

[sleepyinvegas]

I'm generally pretty tired after the first few hours of the day. I am significantly improved from before the therapy but still no-where near the miracle I felt after the titration. I will call the DME today and ask for an increase in pressure. I would love to use the APAP feature but my current DME does not want me to use that.... I would take them out of the equation if I could but I am not aware of any way to bypass the DME and change the settings on the machine. Any suggestions on what to say to get them to allow me to have the APAP setting rather than straight CPAP?

[hyperlexis]

Habitually taking Sudafed is a bad idea for one. With Claratin and other techniques, you may be able to cut down on the dose of Sudafed. Switch to another non-sedating antihistamine and/or decongestant and/or nasal steroid like Nasalcrom or Flonase, etc. Consider sinus rinses with saline as well if it's really bad. Also, obviously, consider a properly sized, true HEPA filter for the bedroom and get rid of as many allergens from the house as possible (not an easy task...). Perhaps an allergist should be consulted as well.

You don't, per se, need to boost the pressure for a FFM vs a nasal. Did the DME/MD tell you this? The machine compensates for leak rates.

Plus, not everyone feels great on xpap and sometimes it takes a long time. I'm still tired and I have good numbers usually. The fact I was out till three am yesterday and crashed without masking up may have something to do with it....

If things don't improve definitely ask the sleep md about the readings or, if really bad, you may need another titration study.

Or, the brain fog you described may have a totally unrelated cause, even neurological.

[hyperlexis]

I'm generally pretty tired after the first few hours of the day. I am significantly improved from before the therapy but still no-where near the miracle I felt after the titration. I will call the DME today and ask for an increase in pressure. I would love to use the APAP feature but my current DME does not want me to use that.... I would take them out of the equation if I could but I am not aware of any way to bypass the DME and change the settings on the machine. Any suggestions on what to say to get them to allow me to have the APAP setting rather than straight CPAP?

APAP can actually wake people up when the pressure hunts around to check for better numbers -- however it may not for you. So it definitely may be worth trying if all else fails.

[tmr]

You can find the clinical manual here

http://www.apneaboard.com/adjust-cpap-p ... tup-manual

[Pugsy]

Check your private message box. I sent you some information on your machine.
Not telling you to go changing things right now but it never hurts to know how to get to the clinical setup menu.

Oh...I don't know if the DME would consider apap mode to help bust up those clusters. It's just common sense really but sometimes they are short on common sense. They aren't horribly horrible clusters though and most likely the machine wouldn't want to go hugely higher than the current 8 cm pressure...maybe 9 or 10 cm.

[Pugsy]

Oh....make sure you get the correct manual.
There's the newer Plus series. You chose the older choice in your equipment profile. I don't know if your DME gave you the older model or the newer Plus model.

[Julie]

Another thing to consider (and you said you're addressing it) is that caffeine of course affects your sleep, but can also be a serious problem in GERD (acid reflux) that may be taking place overnight without you're realizing it ('silent Gerd'), but it can affect how much and how deeply you sleep, and can 'arouse' you the same way apneas do, without you're knowing it, and affect the quality of your e.g. REM sleep, which is important. For whatever reason (it's been and being debated) many of us have GERD, silent or otherwise, so being serious about getting off caffeine is important (please don't cover GERD with meds as that's a whole other level of potential trouble), or at least limiting it to mornings, and the least amount you can manage.

When you come off caffeine after a long time, you are likely to get headaches for a few days (drinking lots of water helps), so don't confuse those with apnea a.m. headaches. And you may also be irritable and certainly more tired or sleepy for a while... so again, don't confuse those with apneas unless they don't go away within a fairly short time.

[sleepyinvegas]

Thank you again for the replies! I very much appreciate the extra information! I am working on using a flonase type nasal spray and I have been using a neti pot for the last week and I am looking into a whole house purifier to help with the allergies inside. As for the mask pressure for FFM vs Nasal pillows yes the DME did tell me this though I suspect they really don't know for sure what they are talking about and want to justify the $2500.00 per night sleep study charge and since my insurance will not cover another in a short period they want to maintain reimbursement, though that is just a theory. In the meantime is there any whole room HEPA filters that you recommend? I have no experience with them and I would love to have some relief. My room is pretty large though