Help...Still no relief

[warrior391]

Unfortunately, I have not felt the benefits thus far after 8 weeks on cpap, but I am told(thru another thread) and read about the "sleep debt" and other factors. I went to my 6 week follow up and my Sleep Dr, whom I like, showed me a summary report of my therapy and stated, " 6 1/2 hours average sleep, very good"...I about fell outta my seat,( since I use the Encore Pro 2.2 sofware to read my data) and he said nothing about the details..Uggggg. He also decided to mention to me that I am not in the "life threatening" group of apnea sufferers...

As of the last four nites now, I havnt even used my cpap... maybe outta frustration, maybe testing myself since I have had sinus congestion for over 2 weeks now and wondering if it is due to the cpap and/or if its prolonging the symptoms..I dunno. Clearing up now though. I just feel like I am going thru all of this and not feeling better is more stressful then apnea. I know I am not snoring and holding my breath like I do w/o the cpap, according to my data, but the frustration of not feeling better, having this thing on at nite still bothering me, getting up to check and make sure no leaks, adjusting my position to be comfortable, and making sure there are no leaks in that process...Uggggg. Am I really gaining anything from this? I know that maybe my overall health my be improved in the long run, but I wanna feel better, less tired and fatigued at 430-6 ish. Doc also told me that since I am not in the "life threatening" group, IE: only 1 episode every 2 mins, tha I "may" not feel better..he also said to give it 6 months.

I am also wondering that since I suffer from OSA, am I central OSA, since I literally "hold" my breath, or am I simply physically Obsructed OSA? And would an oral appliance benefit me in this case? Doc seems to think I am combination. But he said I could go to my dentist and get fitted for an appliance, but then would have to go for another sleep study to see the results.

[Julie]

Your congestion could just be due to your having set the humidifier too high - happens all the time. And you might experiment with taping for a night or two to see if it helps (signifying that a FF mask might be in order). Without seeing your data or a lot else (besides your generally unhappy note) it's hard to comment a lot more.

[echo]

I agree with Julie on both points.
The congestion can be due to too much humidity. You might want to set the heating to 0 so that it's running in a passover mode. Also it's allergy season, do you suffer from hay fever? A daily sinus rinse can do wonders, if you're not already doing that.

Based on your previous post from March, and what you're writing here, it does sound to me like you still need to look into whether you're mouth breathing / leaking. I was mouth leaking for a whole month without knowing it, until my boyfriend noticed it while I was asleep. Taping can solve that, so can a good full face mask. I suppose a chinstrap helps some. Also mouth leaks do NOT necessarily show up as leaks on your CPAP data. Make sure you eliminate this as a possible cause before you get any more frustrated. A dry mouth/throat is a good indication of mouth breathing (and also why one might want to turn up their humidifer all the way...!).

How is your current AHI?

6 months is a long to go feeling crappy, I agree. I wouldn't wait that long to try to troubleshoot why you're not feeling well (and that's why you're here, right?). I'm not sure if I agree with your doc that 1 episode every 2 minutes (EVERY TWO MINUTES!) isn't 'life threatening'. That's considered 'severe sleep apnea' , and it means that EVERY TWO MINUTES you stop breathing for > 10 seconds and your blood oxygen level drops by > 4% (in the case of an apnea). Sounds pretty life threatening to me.

OSA is Obstructive Sleep Apnea. If you had a lot of central apnea's it would say so on your sleep study (and based on your march post it sounds like it's only obstructive). An oral appliance might work, but CPAP is still the golden standard in OSA treatment. And yes, you would need a followup study to make sure it's working.

I know it's frustrating at first, especially fighting the mask. See if your supplier can let you test out some other masks, maybe you just need a different one. It can take some time to find the right setup. Hose management is important too - hang your hose from the headboard or the ceiling or wherever - it will pull less on your mask especially when you toss and turn, and it will help reduce leaks.

CPAP is also a habit, the more you use it the easier it will get. Just experiment until you find the setup that works for you. Get your supplier/DME to help you. If they don't , go online to cpaptalk or the cpapauction. It CAN work for you and IT WILL make you feel better and it WILL be worth it in the end!

[thewetlizard]

Don't get discouraged! At first I was about to give it up. Now, at 8 months with cpap I'm doing alot better. Yes, I do have better nights even better weeks. But I have stuck with it now I can't see myself without it!

[warrior391]

I agree with Julie on both points.
The congestion can be due to too much humidity. You might want to set the heating to 0 so that it's running in a passover mode. Also it's allergy season, do you suffer from hay fever? A daily sinus rinse can do wonders, if you're not already doing that.

Based on your previous post from March, and what you're writing here, it does sound to me like you still need to look into whether you're mouth breathing / leaking. I was mouth leaking for a whole month without knowing it, until my boyfriend noticed it while I was asleep. Taping can solve that, so can a good full face mask. I suppose a chinstrap helps some. Also mouth leaks do NOT necessarily show up as leaks on your CPAP data. Make sure you eliminate this as a possible cause before you get any more frustrated. A dry mouth/throat is a good indication of mouth breathing (and also why one might want to turn up their humidifer all the way...!).

How is your current AHI?

6 months is a long to go feeling crappy, I agree. I wouldn't wait that long to try to troubleshoot why you're not feeling well (and that's why you're here, right?). I'm not sure if I agree with your doc that 1 episode every 2 minutes (EVERY TWO MINUTES!) isn't 'life threatening'. That's considered 'severe sleep apnea' , and it means that EVERY TWO MINUTES you stop breathing for > 10 seconds and your blood oxygen level drops by > 4% (in the case of an apnea). Sounds pretty life threatening to me.

OSA is Obstructive Sleep Apnea. If you had a lot of central apnea's it would say so on your sleep study (and based on your march post it sounds like it's only obstructive). An oral appliance might work, but CPAP is still the golden standard in OSA treatment. And yes, you would need a followup study to make sure it's working.

I know it's frustrating at first, especially fighting the mask. See if your supplier can let you test out some other masks, maybe you just need a different one. It can take some time to find the right setup. Hose management is important too - hang your hose from the headboard or the ceiling or wherever - it will pull less on your mask especially when you toss and turn, and it will help reduce leaks.

CPAP is also a habit, the more you use it the easier it will get. Just experiment until you find the setup that works for you. Get your supplier/DME to help you. If they don't , go online to cpaptalk or the cpapauction. It CAN work for you and IT WILL make you feel better and it WILL be worth it in the end!

Ref: the Humidifier... I have lowered by 1 down to zero over a few nites...I have not , but was suggested by my DME to turn it all the way up as well...I dont suffer seasonal allergies, far as I know since my last allergy testing...I may have just caught a good head cold...feel berr now, althogh I havnt had the cpap on for 4 nites...time to go back to it and see. I was using the Neti Pot Sinu Cleanse before bed to help, it worked for a bit then all nite I think the air going thru my nose kept me clear, then after taking off the mask in the morning I got congested again and ran another rinse thru for the day.

Ref: leaks, I thought that the data would indicate leaks or not? My leak rate, according to the referance range for my pressure setting and nasal mask , is righ ton...fairly straight line. I tried taping one nite...bout the same data, but talk about weird. I can try that again and see if my data improves...

AHI average is about of 5-6. One nite I may have 3-3.5 and another maybe 7 or 6...

Sorry, I know OSA is obstructive, but I understand that there is central and what? Physical so to speak? for lack of medical term.

Res: hose, I do have it hanging form my head board so as to keep the tension off of it and more free to move around.

My DME had been fairly helpful, I think I wanna try the Swift FX, but I am gonna keep the Swift LT for now and play with that some still and see if there is any improvement...

I agree that 1 every 2 mins is still alot...I mean really, stop breating for 10secs or more every 2 mins...yea, O2 levels and stuff...his opinion I guess. Thats why I read my own data and listen to you all on here.

Just getting frustrated with it all I think righ tnow and need to get back on trac...I think we/I seem to go thru some stages untill we actually get used to this completely.

[glenwood73]

I to have the same problem after three years,let me know if you find something that works.

[echo]

Just getting frustrated with it all I think righ tnow and need to get back on trac...I think we/I seem to go thru some stages untill we actually get used to this completely.

Yes that's exactly it! Just keep plugging away at it and keep that positive attitude. It CAN and WILL get better.

In addition to obstructive apnea's you can also have central apnea's. The difference is that with central's, your brain doesn't tell your body to breath, whereas with an obstructive you try to breath but you can't because your throat is blocked. There are also Complex and Mixed sleep apnea, which is a combination of both types of apneas. If you have a majority of central apneas or complex/mixed sleep apnea then this should have been noticed on during your PSG and/or your titration. I just noticed in your previous post you said your doctor seems to think you are a "combination" ... I'm not sure what you mean by that. Was there anything on your PSG or titration indicating more than just obstructive apnea?

[kteague]

Yes, it is discouraging when something we held so much hope in is slow to fulfill our expectations. As far as getting used to cpap treatment, working the bugs out, and repaying sleep debt, 8 weeks is a long time only to the one still suffering. Overnight success is probably more the exception than the rule. Purposed methodical perseverence gives the best opportunity for "success" to surface sooner rather than later. You've gotten some good insights from others thusfar to pursue. You're already a step ahead of many at this point by being in tune with your data and being able to see which changes make a difference in your numbers and which ones don't. It is unfortunate that you got this congestion so early in your treatment, but just look at it as a temporary diversion now that you're ready to get back on track.

Can't say I agree wholly with your doc. I'm thinking of a couple things that can make one not notice a difference in how they feel after being on cpap treatment that has been optimized, and neither of those is the severity of their apnea. One is that they may have other medical conditions contributing to their symptoms. The other is that their undiagnosed apnea hadn't caused them to feel horrible anyhow, so what's to notice? You're right, keep working thru the phases. It's too soon to throw in the towel - especially for a warrior.

[kteague]

glenwood73 - I am so sorry to hear that you are still stuggling. Just a few things for you to think about...

On effectiveness: Do you still have a non-data machine? Have you had any more sleep studies? If no to both, maybe your doctor can order a 2 week loaner of an apap to see if your pressure is adequate.
Edited
On other issues: Any possibility you could have RLS or maybe limb movements during sleep? Have you been evaluated for the common energy thieves of diabetes, thyroid dysfunction, heart problems, and anemia?

Please don't give up on feeling better as long as there is a stone left unturned.

Kathy

[zorrro13]

took me 12 months just to stop taking my mask off during sleep. took nearly 2 years for me to be 100% compatible with CPAP. Now sleep like a baby..

[jweeks]

Unfortunately, I have not felt the benefits thus far after 8 weeks on cpap, but I am told(thru another thread) and read about the "sleep debt" and other factors. I went to my 6 week follow up and my Sleep Dr, whom I like, showed me a summary report of my therapy and stated, " 6 1/2 hours average sleep, very good"...I about fell outta my seat,( since I use the Encore Pro 2.2 sofware to read my data) and he said nothing about the details..Uggggg. He also decided to mention to me that I am not in the "life threatening" group of apnea sufferers...

Hi,

If I were in your place, I'd consider finding a different sleep doctor, one that wants to help you, and get another sleep study scheduled. It is possible that you have more than one issue, and apnea was just the first layer of this cake. It is possible that the machine needs to be adjusted. It is possible that you need a different kind of machine.

Here is my data point...I was doing very well for over a year using my BiLevel machine. I switched to a new machine, one that was auto-adjusting. I felt crappy from the first moment that I used this machine, and it didn't get better over the 10 days that I used it in auto mode. The data suggested that I was not having any events and that I should have been sleeping perfect, yet I felt sleepy all the time. I switched it out of auto mode and into BiLevel mode, and now I am purring like a kitten again, and feel just as good as when I was using my old machine.

That is the funny thing about this disease...there are no cookie-cutter solutions, and everyone reacts differently. Also, a doctor who doesn't recognize that isn't doing you any favor.

-john-

[warrior391]

Unfortunately, I have not felt the benefits thus far after 8 weeks on cpap, but I am told(thru another thread) and read about the "sleep debt" and other factors. I went to my 6 week follow up and my Sleep Dr, whom I like, showed me a summary report of my therapy and stated, " 6 1/2 hours average sleep, very good"...I about fell outta my seat,( since I use the Encore Pro 2.2 sofware to read my data) and he said nothing about the details..Uggggg. He also decided to mention to me that I am not in the "life threatening" group of apnea sufferers...

Hi,

If I were in your place, I'd consider finding a different sleep doctor, one that wants to help you, and get another sleep study scheduled. It is possible that you have more than one issue, and apnea was just the first layer of this cake. It is possible that the machine needs to be adjusted. It is possible that you need a different kind of machine.

Here is my data point...I was doing very well for over a year using my BiLevel machine. I switched to a new machine, one that was auto-adjusting. I felt crappy from the first moment that I used this machine, and it didn't get better over the 10 days that I used it in auto mode. The data suggested that I was not having any events and that I should have been sleeping perfect, yet I felt sleepy all the time. I switched it out of auto mode and into BiLevel mode, and now I am purring like a kitten again, and feel just as good as when I was using my old machine.

That is the funny thing about this disease...there are no cookie-cutter solutions, and everyone reacts differently. Also, a doctor who doesn't recognize that isn't doing you any favor.

-john-

Don't you think it too soon to change sleep docs and to consider another study? Should I try som eof the adjustmentns and advice from here forst for awhile. Seems the logical route to go for now...? Thanks

[warrior391]

Just getting frustrated with it all I think righ tnow and need to get back on trac...I think we/I seem to go thru some stages untill we actually get used to this completely.

Yes that's exactly it! Just keep plugging away at it and keep that positive attitude. It CAN and WILL get better.

In addition to obstructive apnea's you can also have central apnea's. The difference is that with central's, your brain doesn't tell your body to breath, whereas with an obstructive you try to breath but you can't because your throat is blocked. There are also Complex and Mixed sleep apnea, which is a combination of both types of apneas. If you have a majority of central apneas or complex/mixed sleep apnea then this should have been noticed on during your PSG and/or your titration. I just noticed in your previous post you said your doctor seems to think you are a "combination" ... I'm not sure what you mean by that. Was there anything on your PSG or titration indicating more than just obstructive apnea?

Well, I believe he said that I may have complez/or mixed...central and obstructive. Not sure what you mean by the PSG and or titration? I will look at my study results, but I think I only got a summary report and not a detailed report of my sleep study...I will check to see if that info is on there once I know what I am looking for, if not I will get the full report form my Dr's office.

[jweeks]

Well, I believe he said that I may have complez/or mixed...central and obstructive. Not sure what you mean by the PSG and or titration? I will look at my study results, but I think I only got a summary report and not a detailed report of my sleep study...

Warrior,

A PSG is a polysomnogram. That is the test that they run during a sleep study. They correlate your breathing, oxygen, heart, body motion, and brain waves with your sleep while under observation. Titration is when they have you on a breathing machine (one of the PAP machines like a CPAP, APAP, BiPAP, VPAP, etc) and they adjust the settings while doing a PSG so they can tell the specific pressure settings where your events stop. This can be tricky for people with complex apnea since a pressure high enough to keep your airway open can often be high enough to actually cause central events. This is where you can really mess yourself up by playing doctor at home. You really do want to get a good solid diagnosis and a valid titration. Tweaking after you know this stuff is OK, but I wouldn't suggest that when you are first getting started. At least not until the medical system has failed you, which it has for a number of people who post in this forum. Like all areas of human activity, there are some doctors and clinics that are outstanding, many that are competent, and some that are real lemons.

-john-

[warrior391]

Well, I believe he said that I may have complez/or mixed...central and obstructive. Not sure what you mean by the PSG and or titration? I will look at my study results, but I think I only got a summary report and not a detailed report of my sleep study...

Warrior,

A PSG is a polysomnogram. That is the test that they run during a sleep study. They correlate your breathing, oxygen, heart, body motion, and brain waves with your sleep while under observation. Titration is when they have you on a breathing machine (one of the PAP machines like a CPAP, APAP, BiPAP, VPAP, etc) and they adjust the settings while doing a PSG so they can tell the specific pressure settings where your events stop. This can be tricky for people with complex apnea since a pressure high enough to keep your airway open can often be high enough to actually cause central events. This is where you can really mess yourself up by playing doctor at home. You really do want to get a good solid diagnosis and a valid titration. Tweaking after you know this stuff is OK, but I wouldn't suggest that when you are first getting started. At least not until the medical system has failed you, which it has for a number of people who post in this forum. Like all areas of human activity, there are some doctors and clinics that are outstanding, many that are competent, and some that are real lemons.

-john-

Ok Thanks John, well I know I dont have that report, like I said , just the summary report telling me how manys apneas and hypopneas and desaturation.Nothing detailed to show me all of the above info. So far, over hte 8 weeks,I have only raised the pressure from 7 - 9 and getting slightly better overall numbers and playing with the humidity setting.

So I used the cpap last nite after 4 nites off, and it looks like I had a great 6:46 mins on therapy with only 1.8 AHI and a fairly straight leak rate line. And I actually slept on my side. But I know I will still be tired later though