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[Diagnosis] I don't think I need CPAP. Am I wrong?
#1
I don't think I need CPAP. Am I wrong?
This is probably way too long for a first post, but I have no idea where else to ask this, so I'm here.

Why I went to get a sleep study...

I talked to my PCP about my problem. I have a lot of trouble falling asleep and if I have the rare case where I wake up after 3AM, there is no going back to sleep. As it gets to around 10:30, I start becoming hyper-aware of my legs. No pain, no compulsive movements, just a weird vibrating feeling that makes me really aware of my legs. I read up on Restless Leg and while some aspects fit, it doesn't wake me up once I get to sleep and my wife widely reports that I don't move my legs much if at all and I don't really snore often and when I do its not bad. I'm not tired through the day and when I do sleep, I feel fine in the morning. I never nap because I'm not tired. No mental impairment, no "lack of sleep" symptoms whatsoever. I just have trouble falling asleep or getting back to sleep. Even when I wake up at 3AM and can't get back to sleep, I'm fine for the whole day and just get to sleep normally (for me) the next night. My way of coping was to take an Advil or two and maybe a benadryl and I'd be asleep in 30 minutes or so. In extreme cases, I'd pop 1/2 or a full 5mg ambien.

Oh, and other than the leg awareness, none of this is new. I've never gotten much sleep and always had trouble falling asleep. My 7 year old is the same way as well as my mother. I had a 23 and me done and have some marker indicating I need less sleep than most. But the leg thing and difficulty falling asleep is getting worse as time goes on.

So, I did my sleep study 12/26 and covid hit, so it wasn't until 10 days ago that I saw the Sleep specialist.

I am a hardcore stomach and side sleeper. Sleeping on my back is waterboard-level torture to me. After surgeries where recovery required back sleeping, I just didn't sleep for a few weeks. Maybe an hour a night. I was miserable during the study and never got really much sleep. The tech giving it said that 80% of the tests are 1/2 without CPAP and 1/2 with CPAP. She canceled the CPAP portion based upon metrics and said "you'll probably be back, but I can't tell you anything."

I explained to the Sleep Specialist Doctor my issues as described above, but she immediately moved to OSA. She went over my results with me. OSAT was fine throughout the study - Above 92-93 whole time, dipping to a low of 86 briefly. I had an AHI of 11, and a very small amount of REM, mostly when they allowed me during the study to be on my side.

Anyway, she turned the results off on the computer and started immediately educating me on CPAP and could see that I wasn't happy. My response to her was (politely) along the lines of "I came here because I have trouble getting to sleep. When I do get to sleep I feel rested and have no daytime symptoms and would never had brought my problem to a doctor based upon actual sleep. You are prescribing me something that is going to make it harder to get to sleep. I feel like I came in here for one problem, you are solving a non-problem, and making my original problem worse." 

She listened patiently then started selling me on my high blood pressure and that if for that alone I should be on CPAP. Honestly, I felt like she was more of a car salesman than a doctor. (Although that is extreme. I know she is a caring doctor trying to do right by me.) 

She told me she would prescribe ambien to make it easier to fall asleep with the equipment on. 

Anyway, since wearing it for a week, I'm still having (more) trouble falling asleep and when I wake up I have bad headaches. At night while sleeping, I am waking more to deal with the discomfort of the machine. With less sleep than normal, NOW I am having daytime symptoms of tiredness.

My machine is reporting either 0.1 or 0.7 AHI every night. All other metrics on the myAir app are top of the scale except the hours of sleep.

I still don't see any actual benefits and see no reason why I should expect future benefits.

Honestly, the only reason I haven't given the machine back at this point is that it has a tattler on it and is streaming data to my doctor and insurance company for compliance and if I don't use it I will have to pay for the whole machine out of pocket. I am trapped.

Please give me some advice on this. It's a first-world problem, but I'm not a happy camper right now.
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#2
RE: I don't think I need CPAP. Am I wrong?
Welcome to Apnea Board. I'm not going to make you do what you don't want to do, but I will tell you some facts you may not like to hear. Here's what the numbers tell us so far. You say the partial sleep study gave an AHI of 11. And when you use the CPAP and look at its data, you then have an AHI of .1-.7. That tells us there is in fact apnea to be treated, and the CPAP is doing what its supposed to do.

So as I see it, you have a choice to make. Be diligent to use the CPAP now and gain its benefits early in the game as it is. Or you can give the CPAP back upon failing compliance and be forced to repeat this again some time later when apnea events are far more frequent and you do have lots of apnea symptoms, tiredness, morning headaches, etc. If you continue with CPAP now, you may not need a lot of pressure to gain good therapy. However, if you put it off till later, the pressures will be higher and I guarantee you will like it less than you do now. One last thought, as you do have some apnea events indicated by the AHI of 11 from the test, they do not ever just go away by themselves. My guess is that the bit of apnea you have now are having a part to play in the struggles to fall asleep.

It's your choice, adapt to CPAP now while it's easy, or put it off until later when it will be harder than it is now. Oh, and one more thing. If you started now, we would suggest getting OSCAR to see your own data. When you posted it here, we could tell you helpful things like adjust this or that setting to gain comfort or better therapy, etc. FWIW, other means of apnea treatment like different surgeries are less successful and far more painful than CPAP. So, again it's your choice, now or later for PAP therapy, because medical info tells us apnea events do not just go away on their own. Once you have it, you must take some effort to enact a therapy of some sort.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: I don't think I need CPAP. Am I wrong?
If you want an in-depth analysis of your CPAP use, post a chart. There might be more you could do to improve comfort and effectiveness. There is nothing we can do about your attitude towards that therapy other than to make it as good as possible.
Sleeprider
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#4
RE: I don't think I need CPAP. Am I wrong?
I will make a request to my doctor for the study results.

I am trying to give this a go, really I am. If I wasn't I would have just said no and never got the CPAP to begin with. Forgive me if I seem like I have an attitude. I am only trying to be honest and provide details about my situation.

I didn't feel heard by my doctor and I'm just trying to validate my treatment is necessary. Maybe this is the wrong forum, so if this is isn't the right place for me, let me know.
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#5
RE: I don't think I need CPAP. Am I wrong?
Hi dallassoxfan,
Welcome to Apnea Board!

Don't worry too much about your attitude (as long as you are willing to learn and use the machine.)  Everyone has a right to rant now and then... Lord knows, I've done it enough.

The fact that you are a stomach and side sleeper is a good thing as it will more than likely keep your AHI in check.  When you lay on your back, your chin tends to tuck into your chest and could cause more Obstructive events by cutting off your air supply.

Your sleep study shows an AHI of 11, and that is untreated apnea.  Once placed on a CPAP, the numbers fell to 0.7.  That is treated apnea and definitely should be considered a benefit.  

You are more tired now and that is probably due to a combination of the problems with your legs and most likely your Cpap is not set up as good as can be.  Your doctor is right though with the comment about Blood Pressure.  If you have high BP, or any other disease, those things will only get worse in the next couple years without CPAP therapy.  Untreated apnea will cause you a whole host of issues in the years to come.  

Do get a copy of your Sleep Study and post it here.  Use this same thread.  And in the meantime, be sure there is a SD card in your CPAP.  Also, download OSCAR software and start looking over your data.  When your ready, post a Screenshot of the daily page in OSCAR if you want someone to review it and advise.  Follow the links in my signature line for Organizing the graphs and using the attachment feature to post.

Good Luck, and hope you stick around. BTW, the two posters above really know their stuff. They will give good advice if you give them a chance.
OpalRose
Apnea Board Administrator
www.ApneaBoard.com
Dreaming


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: I don't think I need CPAP. Am I wrong?
I don't see any problem with venting your frustration and concerns. I was there before you by a few years. My problem was I put off complaining and mentioning symptoms of sleep deprivation, etc. that would have pointed out major apnea problems. Had I done so sooner, maybe things would be a bit better for me now medically. It's only a guess of course. When I finally did get tested, my CPAP was set to 18. I could not get used to breathing out, and pretty soon failed the compliance in 2015. I had no doctor support, just the stern use it or you're a failure thing. He had no time for my concerns, complaints, etc. Then after I failed CPAP, I did a bariatric surgery in 2016 to lose weight. I looked into ENT advisement on surgeries. Just to avoid PAP therapy. Things just got worse, despite AHI being cut in half after the weight loss. To put it in perspective, my highest AHI was about 75 before weight loss.

Like I said earlier, I cannot make you do anything. I am only pointing out what I learned via hindsight. I would have benefited greatly by the advice here at AB, but I didn't find this site until my second go at CPAP when it was even more difficult and with more various apnea events to deal with. I have Complex Apnea, meaning I have central and obstructive apnea, and on top of that I have COPD. I tried both CPAP and BPAP and failed due to CA events. The ASV I have now is not playing well with COPD, and I'm facing a battle to get an even more expensive and far more powerful ventilator. I'd have been happy to have the test result of 11 AHI.

Give a serious try to make CPAP work. Here's all I want you to consider doing. Get the free OSCAR program that creates usage charts on your PC. Use your CPAP overnight as much as you can tolerate. Make sure you have an SD card in your PAP machine to store the data, and use that SD to transfer info to OSCAR. Post a screenshot of OSCAR in this thread, and include your thoughts on usage. Tell us the detailed answer involving the PAP use overnight, answer the question "how do you feel?" after that night's use. And last thing, tell us the make and model of your CPAP and mask.

What this info does is gives us data to give informed suggestions to make the therapy better and more comfortable. PAP therapy is not buying a pair of size 11W shoe. PAP is not one size fits all. It must be customized for you specifically. And that is what data does, it tells us what to tell you to adjust to get the most out of this. We will help you succeed if you give it a good try.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: I don't think I need CPAP. Am I wrong?
Thanks for the feedback, but the thing that makes me question this all is that I had no symptoms of bad sleep. I'm NOT tired, do NOT have cognitive impairment, I'n NOT irritable, or any of the other things that drive people to talk to a doctor.

I have trouble falling asleep and always have since I was a little kid. As I'm now in my 40s its getting to the point where it is annoying me. Once I actually get to sleep, I sleep fine and feel good all day, unless the difficulty getting to sleep has me up until 2:30 AM and waking up at 6:00 to get ready for work. The trouble falling asleep isn't that I'm almost asleep and wake up gasping. I'm very coherent the whole time and eventually get so frustrated I just get up and read for a bit then try again. Or I take benadryl or ambien and all is good except a little groggy in the morning.


In the initial conversation with my primary care doctor he said, "We can try some ambien or do a sleep study, but its your call." It was late december and my out of pocket max was already hit, so I said lets go ahead with sleep study. 

The study went horrible for me - I was irritated being forced on my back and they didn't do the mask part and ended it early. Then my doctor saw a bottom line number said CPAP and was out. She was maybe in the room for 5 minutes. Her appointments were running 45 minutes behind and I think she was trying to catch up time on me.
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#8
RE: I don't think I need CPAP. Am I wrong?
The symptom of difficulty falling asleep can itself point to apnea. I've dealt with it as well. My body was trying to tell me sleep was a bad thing from the apnea events and problems it can cause.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: I don't think I need CPAP. Am I wrong?
(06-30-2020, 01:18 PM)dallassoxfan Wrote: Thanks for the feedback, but the thing that makes me question this all is that I had no symptoms of bad sleep. I'm NOT tired, do NOT have cognitive impairment, I'n NOT irritable, or any of the other things that drive people to talk to a doctor.

I was the same. I didn't think I had bad sleep or tiredness or any other ailment linked.  In fact, I always argued against any suggestion.
My problem was that after I got married, my wife complained about the snoring for sure, I always knew I did, but she also commented that I appeared to stop breathing momentarily in my sleep. Of course, I had no recollection or acknowledgment of this.
After I did thhe sleep study recommended by my doctor after physical examinattiion of nasal passages, etc, it was confirmed. The recommendation was a CPAP machine, which I completely argued against.


After much research, I realised it was the go-to remedy.
I accepted it, and now we are happier.
I still need to overcome some noise issues with the mask/machine, but I will do that on a separate thread.

It took me 8 months from first seeing a doctor about the issue to getting the machine.
I would still rather not have it, but we are in a better place for it, and yes, I do feel less tired in the mornings, even though I swore blind I was not tired before.
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#10
RE: I don't think I need CPAP. Am I wrong?
A few points,
1. you have apnea (11) and is treated by your CPAP to 0.7, that is good. CPAP is working 'therapeutically'.
2. CPAP is not working for your comfort.
3. OSCAR will tell us a lot of what is actually happening, we tend to see far more than most doctors do before something is pointed out. We have been around the block a time or two.
4. Do get a SD card <= 32GB, not bigger, for the current machine, it will not impact anything your medical team is doing or looking at.
5. Post OSCAR charts to learn what is happening
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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