Very Nervous - Doctor says stop CPAP

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
fishmkg
Posts: 4
Joined: Tue Feb 02, 2010 8:55 am
Location: Michigan

Very Nervous - Doctor says stop CPAP

Post by fishmkg » Sun Dec 21, 2014 10:32 pm

I have had OSA for probably most of my adult life. I was finally diagnosed and began treatment 7 years ago. After suffering from various health issues over the years, I have been blessed with good health as of late. I am off all medications, exercise regularly and have lost a great deal of weight. At my last doctor's appointment, my doctor felt my OSA would no longer be present. I remember all too well what my life was like before my OSA was treated. Once it was treated, I was no longer afraid to go to sleep, knowing I would feel great in the morning. For this reason, I am very dependant on my machine (if you are new to the cpap treatment, stick with it.... it will be all worth any struggles you may have at first). My anxiety sky rockets when I think of not using my cpap. I have taken short naps without it recently. In the past, I would have woken up feeling terrible with a headache. However, that has not been the case as of late. Sooooo, last night, I decided to try something. I have the S9. I lowered my pressure range to its lowest settings for the min/max. I set them both at 4. Let me tell you when I put the mask on I was very nervous. I did fall right to sleep and managed to stay fast asleep for 4 hours. When I woke up I felt fine.... still anxious though. When I checked my AHI it was 1.7 events for the 4 hours. I checked my pulse to see if my heart was working harder and it was normal for me at around 60 bpm. I was too nervous so I ramped up the pressure for the rest of the night.

Where does an AHI for a “normal” person without OSA register? I really can’t imagine not using my cpap anymore. I am afraid to go back to how I felt before treatment but if I don’t need it anymore that would be wonderful. It may take me a long time to get rid of my dependence but it would be worth it if it is true. Any advice would be so appreciated. Short of another sleep study, any other ideas to test myself further? I don’t know what to do.

_________________
MaskHumidifier

User avatar
Bill44133
Posts: 1087
Joined: Tue Jul 09, 2013 8:34 pm
Location: North Royalton, OH

Re: Very Nervous - Doctor says stop CPAP

Post by Bill44133 » Sun Dec 21, 2014 11:17 pm

you could get a pulse oximeter to check your O2 level. If you drop below 90 then you know you have problem.

I would recommend that you get another sleep study.


I wish you well

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Zzz-Mask Full Face CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Settings are IPap 23 EPap 19

User avatar
TangledHose
Posts: 862
Joined: Wed Mar 13, 2013 11:13 am
Location: Centennial, CO

Re: Very Nervous - Doctor says stop CPAP

Post by TangledHose » Sun Dec 21, 2014 11:19 pm

Somewhat by definition any AHI below 5 is considered normal, so someone not on CPAP could have any AHI below 5 and be considered in the normal range and not in need of treatment. So you stated "short of another sleep study" but that would really be the only way to know for sure. I notice you say S9 and your equipment says AutoSet, so what you could do is a self titration by setting your pressure range "wide open" by setting minimum at 4cm and max pressure at 20cm. Then the machine will go to the pressure it feels you need to ward off Apnea events based on flow rates, snores and such. That would be about the best indicator short of doing an actual sleep study. If the machine does something like rise to some higher pressure like maybe 8cm overnight as an example, then your machine would be telling you, no you need positive pressure, then don't quit using it.

Be aware that these are only mathematical algorithms that the machine uses to calculate your pressure needs, so it's not definitive. The only real way to know if your untreated AHI stays in the "normal" range (<5) is to do another sleep study.

I am a bit like you in that I have been using cpap for a long time, and I have realized some other health benefits associated with using my cpap. Because I live in a dry climate I have noticed that the warm, humidified air I am breathing every night has vastly improved my sinus congestion problems. And when I go to the dentist for checkups they are telling me that because I am not mouth breathing anymore the environment in my mouth is not nearly as conducive a place for bacteria and as a result my gums are much healthier than before the cpap (for some reason even tho it's a FFM I am not mouth breathing anymore). So my point is if I didn't need cpap anymore for Apnea treatment, I would probably continue to use it anyway just because it is doing so much good for my dry sinuses and mouth that the benefits of continued use at this point out weigh the extra effort involved with the cpap equipment.

So give the wide open pressure experiment a try, see what the machine wants to do, that might give you some indication, or better yet get another sleep study to be sure, and consider other possible bennefits to simply continuing the use of your cpap regardless.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Last edited by TangledHose on Sun Dec 21, 2014 11:27 pm, edited 1 time in total.
Link to Sleepyhead:
http://sleepfiles.com/SH2/

library lady
Posts: 1116
Joined: Wed Feb 05, 2014 11:10 am
Location: Rochester, MN

Re: Very Nervous - Doctor says stop CPAP

Post by library lady » Sun Dec 21, 2014 11:21 pm

I'm a relative newbie after 8 months, but I'd say that a new sleep study would be in order. That is the only way to know if you still have still OA, or need the machine. Many people who are not overweight do have OA, and it's a fallacy to think that losing weight will eliminate the need for CPAP, although in some cases that does happen. Ask your doctor to schedule another sleep study to be sure.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: AirFit™ F10 Full Face Mask with Headgear
Additional Comments:  Sleepyhead
Now using AirFit F10 mask; Quattro Air is backup mask. RemZzzz mask liners with both.

User avatar
chunkyfrog
Posts: 34377
Joined: Mon Jul 12, 2010 5:10 pm
Location: Nebraska--I am sworn to keep the secret of this paradise.

Re: Very Nervous - Doctor says stop CPAP

Post by chunkyfrog » Sun Dec 21, 2014 11:26 pm

If your doctor is in an HMO, his diagnosis may be influenced by money.
Demand an overnight sleep study by an independent lab, if you can.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her

Guest1

Re: Very Nervous - Doctor says stop CPAP

Post by Guest1 » Sun Dec 21, 2014 11:36 pm

If you have plain vanilla OSA, then a home sleep study will give you your answer. No need for an expensive PSG in a lab. Those should be $150 in cash OR even free at times. If your SA is complex, then PSG is necessary. But in either case, an at-home study with a device like Resmed Apnea Link Plus should suffice.

tan
Posts: 565
Joined: Sat Aug 30, 2014 11:58 am

Re: Very Nervous - Doctor says stop CPAP

Post by tan » Mon Dec 22, 2014 12:10 am

Guest1 wrote:If you have plain vanilla OSA, then a home sleep study will give you your answer. No need for an expensive PSG in a lab. Those should be $150 in cash OR even free at times. If your SA is complex, then PSG is necessary. But in either case, an at-home study with a device like Resmed Apnea Link Plus should suffice.
home testing is useless for UARS, unless someone proves otherwise.

borgready
Posts: 267
Joined: Mon Sep 27, 2010 2:41 pm
Location: VA, USA

Re: Very Nervous - Doctor says stop CPAP

Post by borgready » Mon Dec 22, 2014 12:42 am

If you had OSA most of your adult life, I would be skeptical if you are totally cured. You may be in good condition now, but going off the machine will likely put you into a slow slide of going back into bad health. You may be able to get away with the machine for a short period of days to weeks. You will likely start a slow slide back into bad health. When you are in good health, you don't notice the effects of OSA until it starts taking a toll on your health. Many people have it when they are young but can tolerate it due to being young. As they age it takes a toll on their health. I would not jump off of it because the doctor tells you don't need it anymore. What you may notice is that the doctor won't say you have OSA anymore and then the insurance won't cover the machine or supplies. Now if you feel you don't need the machine and want to try going off of it for awhile to see what happens, then try it. You just want to monitor how well you are doing not using the machine. The doctor is not going to monitor you on a on going basis as that gets more expensive than just being on the machine. So you will have to get your own tester or pulse oximeter and check your own data. I would just keep using the machine and enjoy having good health. You also have the piece of mind knowing that you can skip a night or two without the machine without getting seriously messed up.

Be very skeptical of insurance cutting costs. Its bad enough now you pretty much have to buy the machine and supplies on your own with the high deductibles now.

User avatar
archangle
Posts: 9294
Joined: Sun Mar 27, 2011 11:55 am

Re: Very Nervous - Doctor says stop CPAP

Post by archangle » Mon Dec 22, 2014 1:13 am

Are you using SleepyHead? If not, start.

If you want to wean yourself off, do at least a few days at your old CPAP settings to get a baseline. Save the data from your SD card and look at it with SleepyHead. Then slowly lower your minimum and maximum pressure and see what happens. If you work your way down to a much lower pressure without problems, then you have a much better indication that you may be OK. Even if you keep doing CPAP, you'll be at a much lower pressure.

One warning, even if you don't have any apnea at all without CPAP, you may find 4 cmH2O pressure uncomfortable because of rebreathed air. It's not harmful, but may be uncomfortable.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also SleepyHead, PRS1 Auto, Respironics Auto M series, Legacy Auto, and Legacy Plus
Please enter your equipment in your profile so we can help you.
Click here for information on the most common alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check for yourself.

Useful Links.

User avatar
palerider
Posts: 32300
Joined: Wed Dec 16, 2009 5:43 pm
Location: Dallas(ish).

Re: Very Nervous - Doctor says stop CPAP

Post by palerider » Mon Dec 22, 2014 7:11 am

tan wrote: home testing is useless for UARS, unless someone proves otherwise.
please provide references to back up your blanket statement.

_________________
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

JimP
Posts: 181
Joined: Thu Oct 02, 2014 2:49 pm

Re: Very Nervous - Doctor says stop CPAP

Post by JimP » Mon Dec 22, 2014 7:21 am

fishmgr,

You still with us?

How'd it go last night?

User avatar
49er
Posts: 5624
Joined: Mon Jan 16, 2012 8:18 am

Re: Very Nervous - Doctor says stop CPAP

Post by 49er » Mon Dec 22, 2014 7:27 am

palerider wrote:
tan wrote: home testing is useless for UARS, unless someone proves otherwise.
please provide references to back up your blanket statement.
PR,

I guess my question for you or Sludge would be how would a home sleep study test be able to reliably test for UARS according to standard procedures for testing for UARS?

Fishmkg, I agree with the advice to get a sleep study to make sure you don't have apnea.

49er

User avatar
OkyDoky
Posts: 2870
Joined: Mon Aug 25, 2014 5:18 pm

Re: Very Nervous - Doctor says stop CPAP

Post by OkyDoky » Mon Dec 22, 2014 9:46 am

chunkyfrog wrote:If your doctor is in an HMO, his diagnosis may be influenced by money.
Demand an overnight sleep study by an independent lab, if you can.
It would be interesting to know if it was an HMO. I worked in an HMO once when they first started being popular and learned some of the workings. When you are given a pocket full of money, for someone else's care, and how much you get to keep depends on how much you save it is tempting to consider it as my money. The clinic I worked in was a 6 doctor practice and not all were like that but it is a consideration.
Sounds to me like it was possibly time for a new machine and sleep study and your doctor "felt" that money in his pocket. I would also get another sleep study/ opinion.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

User avatar
fishmkg
Posts: 4
Joined: Tue Feb 02, 2010 8:55 am
Location: Michigan

Re: Very Nervous - Doctor says stop CPAP

Post by fishmkg » Mon Dec 22, 2014 10:35 am

Thank you so much everyone for your feedback. I really appreciate it. I agree that the only definitive way to know where my OSA stands is a formal sleep study. Just not too excited about staying in a hospital bed for the night for the study . I’m hoping I can do my own “study” at home to justify if an actual sleep study is warranted to make the final decision. However, I’m not going to cut my pressure again until after the holidays. I’m a little anxious about attempting to go without my cpap and the holidays can be stressful all by themselves. Don’t need to add anymore. Need my sleep....

Bill44133 and others suggested that I monitor my oxygen levels. I did not think of that and did not realize that it could be done at home. My O2 levels would tell me a lot. Any ideas on what I could use that isn’t too expensive and maybe even works with an Android smart phone?

Archangel mentioned SleepyHead. Is that software for downloading cpap machine data? Does anyone use an inexpensive software that can read my data off the SD card from my S9? On my old REMstar Auto C-Flex CPAP, I used Encore which worked great but I don’t think the Encore will work with my S9.

I also want to say again for anyone just starting out with treatment, you may struggle with it at first but stick with it and talk/chat/post with others for advice. It is so worth it. Like many, I struggled with my treatment at first. It took time but I got the kinks worked out and found what worked for me. I can’t imagine my life without it now hence my apprehension regarding not using my machine anymore. As many have so correctly pointed our there are other benefits to the treatment. To be honest, as TangledHose said, even if I find that my apnea falls in the normal range I may continue using my cpap anyways. “If it isn’t broke don’t fix it”, comes to mind.

I want to thank everyone again. I definitely have mixed emotions about it. I go back and forth and struggle with the potential positives and negatives if it’s even an option.

_________________
MaskHumidifier

User avatar
OkyDoky
Posts: 2870
Joined: Mon Aug 25, 2014 5:18 pm

Re: Very Nervous - Doctor says stop CPAP

Post by OkyDoky » Mon Dec 22, 2014 11:01 am

Sleepyhead is an excellent way to monitor your therapy and see what type and how long your events are lasting. Here is the link http://sleepfiles.com/SH/index.html?TestingVersions and the top post on the home page from Pugsy might answer some of your questions. If you have unanswered questions others will help get it up and going for you.
Others can recommend the right SaO2 unit and some are able to coordinate data with sleepyhead.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760