Need Advice on possibly stopping treatment

[LizzyB]

I was diagnosed in March with an AHI of 15, moderate SA, went on APAP in April struggled quite a bit until finally the last 5 + months sleeping mostly through the night (AHI always less that one, most times zero to one event, average pressure 8 - 9). Have felt no benefits, in fact I would not use the machine every once in a while to "catch up on sleep". I also tend to push the mask off after 7 hours and then proceed to sleep like the dead for 3 hours after. Had a check up with the Dr and after explaining my experience, she looked back at my sleep study results (home study) and noted out loud to me that my oxygen levels never really dropped, that's their main concern for heart health etc..., since I wasn't feeling more rested to just stop therapy. At first I was elated - yay I don't have to do this any more, then annoyed as it wasn't an easy experience for me not to mention the costs, why put me through it if I didn't need it. Now I'm wondering if I should trust her advice or get a second opinion. I hate to spend even more money to be told that I don't need to be treated but I also don't want to ignore my health if there is really still an issue. What would you all do?

[D.H.]

Provided that you own the machine, keep the machine if you do stop using it. Make sure it's bone-dry, store it in the bag it came with, and make sure all the zippers are closed (to keep the dust out). Also, run it for a few hours once in a while. It might be very hard to get a new one down the road if you discard this one.

Also, just because you have sleep apnea doesn't mean you can't also have another sleep disorder (such as Narcolepsy), or a non-sleep disorder (such as diabetes or a digestive illness) with a sleep-affecting component.

If this is the case, you'll need to have the additional problem(s) diagnosed and treated.

[Pugsy]

How old are you Lizzy?

I need to think on how to respond to your question a bit if I were in your shoes and I am short on time at the moment.
If your oxygen levels dropped...then it's a no brainer....I would use the machine.
But since yours didn't...I need to think on what I would do if I were in your situation.
My AHI was 12 in non REM sleep but the oxygen levels dropped hugely...and in REM sleep 5 times as many events...so for me it was not an option at all to go without cpap.

I did have a friend who was more in your shoes who tried cpap for several years and never felt better...she died last spring (cancer) but her problem was more crappy sleep in general than the apnea and while we tried lots of things to improve her sleep quality we could never quite get there.

If your sleep quality is worse with cpap than without...and you feel like crap with it and better without cpap...maybe discuss with your doctor trying an oral device. I think that is what I would do if I were in your shoes. They come with their own sleep disturbing baggage though.

15 AHI...that's at the very top of the "mild" category.... It's not like your AHI was 6.0 and you barely made diagnostic criteria to earn the diagnosis.
On average your sleep is disturbed every 4 minutes due to some sort of respiratory event.
Don't feel like the doctor did you a disservice by recommending cpap..that maybe you really didn't "need" cpap.
There's no doubt that you need it but unfortunately you are in the percentage of people who find that cpap doesn't really help relieve the symptoms they wanted relief from and for some actually make sleep and those symptoms worse.

[Snoregone Conclusion]

Consider that it tends to worsen over time.

I think of my oldest brother (58 at this time) with severe congestive heart failure, and he's not gotten treatment all this time (I remember him distinctly having it before he moved away from home, so before his 20's) and in that context, seeing his conditions he's dealing with and how severely disabling it is:

Why on earth would you want to take the risk to end up like that?

Whatever the treatment form, get it treated: it doesn't magically get better.

[LizzyB]

A bit more info ... I’m 51 and in basically good health. I have been diagnosed with hypothyroidism and the medication has helped my daily tiredness quite a bit. All other blood work is good, excercise regularly, not majorly overweight (could stand to lose 15 lbs) Recently had a cardio work up (stress test, untrasound, monitor) all is fine so I don’t think I’m in any cardiac danger.

[palerider]

I was diagnosed in March with an AHI of 15, moderate SA, went on APAP in April struggled quite a bit until finally the last 5 + months sleeping mostly through the night (AHI always less that one, most times zero to one event, average pressure 8 - 9). Have felt no benefits, in fact I would not use the machine every once in a while to "catch up on sleep". I also tend to push the mask off after 7 hours and then proceed to sleep like the dead for 3 hours after. Had a check up with the Dr and after explaining my experience, she looked back at my sleep study results (home study) and noted out loud to me that my oxygen levels never really dropped, that's their main concern for heart health etc..., since I wasn't feeling more rested to just stop therapy. At first I was elated - yay I don't have to do this any more, then annoyed as it wasn't an easy experience for me not to mention the costs, why put me through it if I didn't need it. Now I'm wondering if I should trust her advice or get a second opinion. I hate to spend even more money to be told that I don't need to be treated but I also don't want to ignore my health if there is really still an issue. What would you all do?

A better plan would be to post some charts and see if your therapy is optimized.. (there's a slim chance that it is, but most for most people spit out of the sleep apnea medicine grinder, it's not).

[Wulfman...]

I was diagnosed in March with an AHI of 15, moderate SA, went on APAP in April struggled quite a bit until finally the last 5 + months sleeping mostly through the night (AHI always less that one, most times zero to one event, average pressure 8 - 9). Have felt no benefits, in fact I would not use the machine every once in a while to "catch up on sleep". I also tend to push the mask off after 7 hours and then proceed to sleep like the dead for 3 hours after. Had a check up with the Dr and after explaining my experience, she looked back at my sleep study results (home study) and noted out loud to me that my oxygen levels never really dropped, that's their main concern for heart health etc..., since I wasn't feeling more rested to just stop therapy. At first I was elated - yay I don't have to do this any more, then annoyed as it wasn't an easy experience for me not to mention the costs, why put me through it if I didn't need it. Now I'm wondering if I should trust her advice or get a second opinion. I hate to spend even more money to be told that I don't need to be treated but I also don't want to ignore my health if there is really still an issue. What would you all do?

Keep with the program. Get software to monitor your therapy and use it.
It's YOUR health that's at stake......short term and longer term. Untreated or poorly treated sleep apnea will eventually have negative effects on your health. Sleep apnea (lack of oxygen) puts stress on your organs while you sleep.
Your health may be relatively good now, but they may have caught it before it got worse. This condition doesn't go from nothing to severe overnight. And, you want to head it off before it gets worse as soon as possible. Part of the treatment is mental. Try to avoid or get through the "denial" stage as quickly as possible.
Personally, I was glad to find out what was wrong with me and that the therapy was going to be pretty simple......wearing this while I sleep and feeling better the next day.

From reading your post, I suspect your settings aren't optimal. (you may need to increase your minimum pressure some)
And, you're allowing yourself to avoid using your machine when you feel like it. ALWAYS use it when you're going to be sleeping.
It DOES take some time to get things "dialed in" and become accustomed to, but if you monitor your therapy, it will tell you how you're doing.

Take control of your own therapy. Nobody will care as much about your health as you will......Don't give up!!!


Den

.

[CPAPforever]

What does "oxygen never really dropped" mean? Dropped but not significantly like lowest PO2=93%?

Do you have a copy of your sleep study? What was your lowest PO2 during study? If it was never below 95% with AHI of 15, I might try going off CPAP (but keep the machine). What invariably happens to females as we progress past menopause, EVERYTHING starts hanging down (including tissue around our airway). So at age 51 you could have a higher AHI and lower PO2 even within the next year and will need "the beast" again.

If your P02 is 90% or lower, I would definitely NOT quit. Lowest PO2 91%-95% is your call. You aren't in any immediate danger but could develop into something worse left untreated.

I started CPAP at age 45 my sleep study was AHI=25, lowest PO2 70%, all obstructive. I used CPAP for 12 years on a "brick" at the pressure prescibed (10 psi) and never saw any doctor for followup. I felt was was doing fine using CPAP 100% of sleep (even naps).

Then my excessive daytime sleepiness returned so had a repeat sleep study 6 years ago. Even though I had used CPAP religiously for 12 years my AHI=73 lowest PO2=82%, obstructive and hypopnea. So over the years, without any significant change in weight or lifestyle and on CPAP treatment, my OSA was much worse. I had to go on Bilevel pressure 21/17. Now after six years on Bilevel, I need Auto Bilevel to control obstruction and hypopnea during REM and supine sleep.

Although my OSA worsened, my heart is still very healthy (only 20% occlusion of one coronary artery and it's not the "widow maker") and no stroke. So CPAP for all those years did benefit my heart health.

I hate to think what things would be like if I hadn't been on CPAP all those years. Maybe dead like my sister who died at age 50 due to diagnosed but untreated OSA. She opted for a mouth piece which did little to stop the progression of OSA. The left ventricle of her heart enlarged from breathing effort with worsening OSA and the coroner said she likely had a fatal arrhythmia and died within a minute or two.

OSA should always be taken seriously. AHI at 15 could be AHI at 25 within a year and maybe not. You roll the dice.

[LizzyB]

Screen Shot 2018-04-20 at 2.52.52 PM.png (354.47 KiB) Viewed 893 times

Attached should be a copy of my sleep study if that would help. Thank you all so far for your advice. I do want to restate that it is my Dr that is telling me to stop, its not something I just decided to to because I don't like it. I've been fully committed to the process even thought it was really hard in the beginning for me to get used to.

[CPAPforever]

Your doctor is likely saying it because you stated you don't feel any better and how bad CPAP treatment is for you. You can stay on treatment even if your doctor is suggesting that you could discontinue if it is so horrible for you without feeling better. Your doctor is not forbidding you to continue and probably would be glad if you chose to stay on CPAP if you eventually started feeling better on decent CPAP settings.

Your lowest PO2 was 89% but doesn't say how long you were at that level. Your mean (average) PO2 at 94% is good. The study showed that your drop in PO2 was from 4%-9% and always associated with a respiratory event. Very classic OSA. Any AHI over 15 in a sleep study is NOT MILD. It is moderate and should be treated. AHI from 5-15 is considered mild and most insurance companies won't cover CPAP unless there is an accompanying comorbidity like heart disease, COPD or other chronic illness.

Can you use your machine a few nights and post some graphs? It may reveal that you are not feeling much better because your treatment is suboptimal.

[zoocrewphoto]

A couple things that come to mind. Any chance you are using a range of pressures? It could be that they are successfully treating apnea, but the changes in pressure are bothering you enough to mess with your sleep. If so, you may be better at a straight pressure.

Another thing - you mentioned sleeping for 7 hours with the cpap and then 3 without. I find that by sleeping without the cpap the last couple hours, I undo the good I did. Part of this is probably because the REM stages are usually longer in the later sleep cycles, and many of us have more apnea events during REM. Honestly, I would feel better with 7 hours of cpap, then 7 with cpap and 3 without.

I think it would help in making an educated decision if you could post some graphs of typical nights (and mention if you slept longer without cpap).

[Jas_williams]

As you have moderate sleep apnoea with an AHI of 16.6 you should be using a machine I can see that the o2 desaturations was not severe but an AHI of 16.6 requires a cpap machine I think you are trying to convince yourself you don't have an issue and are in denial rather than accepting the machine and treating yourself for better health

[Arlene1963]

Hi Lizzy,

Is this report a home study or an in lab study? I didn't know that home studies could be this detailed and am quite impressed if this is a home study. (You refer to a home study that your doctor looked at and I guess this is it?)

I too have moderate OSA with an AHI 16 and boy, your report looks so very different to mine! Frankly yours is so, so much better that I can hardly believe both of us have the same diagnosis.

Your oxygen levels are good, and you had only a few awakenings after sleep onset.
You got a decent amount of REM and deep sleep.

What is best for your health and well being?
If you stop using CPAP now, will you always wonder if you are doing yourself a disservice by not continuing?
Why not post a few charts as suggested and see if you can optimize treatment so that you can use CPAP all night every night.


However, If you can't adjust to it even after getting all the help you can here I would say you have given it your best shot, and move on to some other treatment if necessary.

You are fortunate that you maintain good oxygen levels during sleep, and you mentioned in a previous thread that prior to CPAP you fell asleep quickly and slept all night.

There might well be another reason for your fatigue, your thyroid issue for example.

[LizzyB]

I'm attaching two nights from Sleepyhead, these are very "normal" nights for me.

Again I'm not trying to talk myself out of using my machine, I just want to make sure I understand as much as I can about whats going on. I did not ask the Dr to stop, I thought she'd want to look at my settings, possibly suggest some adjustments etc.. this was just a followup appt. She said to stop, I asked specifically about potential heath issues with stopping and she stated that she wasn't worried and went into detail why. At this point, I'm the one worrying about stopping and I just want to understand a bit more before deciding what to do. My sleep test was a home test, one of the things I could do is find a sleep specialist for a second opinion which I'm still considering.

Thank you for all the advice.

[Pugsy]

Can you tell me again what symptoms you are having that haven't improved like you wanted?
What symptoms prompted the sleep study in the first place?
What symptoms might actually be worse since trying cpap?

I may have asked before but I don't remember and no time to look back....are you taking any medications (even OTC) and if so, what?

Your report isn't all that exciting but then I didn't expect it to be with your reported AHI.
The Flow Limitation graph is a wee bit more active than most but then you are using the For Her mode which does tend to make mountains out of FL mole hills so I don't know how important that might be.
Do you have much/if any nasal congestion?