A couple of thoughts after 4 weeks on APAP

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
cyclist56
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A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Sun Jul 19, 2015 8:58 am

First, I have mild apnea, but my oxygen dropped as low as 75 during my sleep study, so I decided to get the APAP. (My situation is complicated by anxiety/depression, which I'm hoping will be helped with better quality sleep). I also have PLMD, categorized as severe after the sleep study. Anyway, I adapted pretty well to the APAP after a couple of nights. My initial AHIs were under 5, leakage rate good (enough), time on machine at least 7 hours (not asleep that long, though). After awhile, my results worsened with leakage rates up, AHI over 10 a couple of times, and over 5 most of the time. I'm also waking up earlier in the a.m. That could be related to me ceasing taking mertazapine 10 days ago. I was on a low dose for the sedative effect only. But about 5 days ago, I started using the strap to keep my mouth closed and switched from large to medium pillow mask. That lowered my leakage rate close to zero, and my AHI gradually dropped - 2.8 last night. So I'd suggest for those having leakage issues to consider a different mask size and use of the chin strap if mouth breathing might be a problem. Still probably not sleeping enough, but I do sleep through the night.

I have not addressed the PLMD as yet. As I noted in a previous post, the med recommended by sleep doctor - klonopin- I'm nervous about starting due to addiction possibility. The doctor did not suggest magnesium or other non-drug remedies, but I plan to ask about them.

As of now, I haven't experienced much benefit from the APAP. I did set up sleepyhead, but I'm not sure how to interpret the data. Don't know how to put a screen shot on here or I would. Thx for listening.

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Pugsy
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Re: A couple of thoughts after 4 weeks on APAP

Post by Pugsy » Sun Jul 19, 2015 9:07 am

For image posting help along with examples of what we like to see
new screen shot thread with Imgur stuff viewtopic/t103468/Need-help-with-screen-shots.html
IMGUR instructions from Krelvin https://sleep.tnet.com/reference/tips/imgur

For help in understanding what you see check out my SleepyHead tutorial thread which is the top Thread in the Announcements section of the main forum page.

Don't try to absorb everything all at one time...stick with the basics...AHI and leak and the other stuff as you become more familiar with all this stuff.

You don't have to use imgur but I find it more user friendly and faster than Photobucket which is the only other photo hosting site I have tried.
Plus with the large thumbnail trick (explained in that thread above) makes for really easy way to see the entire image and not have it be so big as to go off the screen which then requires additional steps to see.

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Pesser
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Re: A couple of thoughts after 4 weeks on APAP

Post by Pesser » Mon Jul 20, 2015 8:18 pm

I had very high levels of anxiety. After about a year the anxiety started to go down. Still going down now after almost two years. XPAP works!

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cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Tue Jul 21, 2015 7:16 am

Pesser wrote:I had very high levels of anxiety. After about a year the anxiety started to go down. Still going down now after almost two years. XPAP works!
Thanks for the response. I think that my anxiety is very much sleep related.


cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Tue Jul 28, 2015 10:47 am

OK, it's been 5 weeks now. I've downloaded data to sleepyhead for the last two weeks, during which time I've had very good mask seal. One thing I've noticed is that the vast majority of events recorded are clear airway events, and mostly when I'm awake waiting to get to sleep or lying in bed in the a.m. trying to get back to sleep. The former is usually 30 minutes or less. The latter an hour or more. OAs and hypopneas are generally less than 2 combined. My average pressure each night is steady at around 9+. My machine is set for a range of 9-15. I'm assuming that events occurring while I'm awake are irrelevant. If so, my numbers are pretty good. My only downfall is my total time asleep is only 5-6 hours; i.e. I could use MORE sleep. The dilemma there is that I don't want to use sleeping pills. I stopped mertazapine (prescribed by my pdoc) a few weeks ago, an AD with sedative effect at low dose. It caused me to gain a lot of weight. I was given samples of a newer drug that suppresses the receptors that keep you awake, but online reviews are not very favorable and Consumer Reports said don't bother. Very expensive and not that effective. So I'll stay the course for now. I see my sleep doctor on 8/12. We can go over my data and see what he thinks/suggests.

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ChicagoGranny
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Re: A couple of thoughts after 4 weeks on APAP

Post by ChicagoGranny » Tue Jul 28, 2015 11:00 am

cyclist56 wrote:my total time asleep is only 5-6 hours; i.e. I could use MORE sleep.
Basics:
- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps.
- Practice total abstinence of caffeine including sources like chocolate
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Optimize emotional stress in your life
- Use CPAP software to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular wellness visits to confirm there are no other medical problems.

cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Thu Jul 30, 2015 8:36 am

Boy, this APAP thing is going in the wrong direction. Even though I feel that I've adapted well to the mask, and I fall asleep usually within 30 minutes, I'm only able to sleep 3-5 hours and am more tired than before APAP. Trying to remain positive, but this is causing a lot of anxiety. Not fun. Been resisting the urge to take a pill, but I may have to if I'm going to benefit from the therapy. Since my apnea was categorized as mild, maybe there's not as much benefit to be had compared to someone with severe apnea. No specific question here, just venting after a tough night.

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Pugsy
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Re: A couple of thoughts after 4 weeks on APAP

Post by Pugsy » Thu Jul 30, 2015 8:53 am

3 to 5 hours of sleep is simply not enough sleep to have any hope of feeling decent during the day.
What are you doing when this happens?
Go back to sleep without mask or get up and begin your day?
Try to go back to sleep with the mask/machine but lay there tossing and turning and worrying?
Do you have very many wake ups during the 3 to 5 hours or do you sleep solidly for that time and then just wake up and can't get back to sleep?
Did you have this problem prior to beginning cpap therapy?

While it isn't unusual to not feel the "miracle" we sure don't expect to sleep worse and feel worse.
Have you read RobySue's blog about her experience with cpap induced insomnia?
http://adventures-in-hosehead-land.blog ... er_19.html

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cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Thu Jul 30, 2015 9:13 am

Pugsy wrote:3 to 5 hours of sleep is simply not enough sleep to have any hope of feeling decent during the day.
What are you doing when this happens?
Go back to sleep without mask or get up and begin your day?
Try to go back to sleep with the mask/machine but lay there tossing and turning and worrying?
Do you have very many wake ups during the 3 to 5 hours or do you sleep solidly for that time and then just wake up and can't get back to sleep?
Did you have this problem prior to beginning cpap therapy?

While it isn't unusual to not feel the "miracle" we sure don't expect to sleep worse and feel worse.
Have you read RobySue's blog about her experience with cpap induced insomnia?
http://adventures-in-hosehead-land.blog ... er_19.html
I sleep for whatever time I can, wake up and can't get back to sleep. I toss and turn, go to another room, count backwards, etc. I keep the mask on until I actually get out of bed in the a.m. Yes, sleep has been a problem for me for a long time, but intermittent. Last fall, though, I developed a lot of anxiety and could not get more than a few hours of sleep, at best. I tried a couple of meds (trazodone and mirtazapine). Both helped but side effects caused me to stop. I guess that I was hoping that my underlying problem was the sleep disorder and that the APAP would solve it.

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Pugsy
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Re: A couple of thoughts after 4 weeks on APAP

Post by Pugsy » Thu Jul 30, 2015 9:29 am

cyclist56 wrote:I guess that I was hoping that my underlying problem was the sleep disorder and that the APAP would solve it.
I totally understand....we hope that cpap therapy will fix "bad sleep" and it can if the only cause of the bad sleep is sleep apnea but often there are other culprits at work causing the bad sleep and the machine can't fix bad sleep if the cause is unrelated to sleep apnea itself. We so hope that the machine will fix all our problems and expect it to...only to find out it can't fix everything that is wrong.

Since this isn't a new problem totally popping up with the beginning of cpap therapy I have my doubts if any tweaking on the machine will impact sleep quality that much but one thing you might consider is apap therapy and the pressure range/variables. For some people even the slightest pressure changes during the night will impact sleep quality. If you look at your reports and you see a wide range of pressures being used then those changes might (stress might) be affecting sleep quality. Now if you look at your reports and your pressure rarely moves off of the 9 cm minimum then it isn't changing much so probably not being much of a factor but if you see it changing all over the place from 9 to 15...then maybe a change to either fixed pressure or a very tight range of pressures would be worth a try to see if it helps the sleep quality or not.

I sleep through some massive changes in pressure but there are others who find that the least little pressure change can affect their sleep quality...so might be worth looking into depending on what you are seeing on your pressure graphs.

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cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Thu Jul 30, 2015 9:45 am

Pugsy wrote:
cyclist56 wrote:I guess that I was hoping that my underlying problem was the sleep disorder and that the APAP would solve it.
I totally understand....we hope that cpap therapy will fix "bad sleep" and it can if the only cause of the bad sleep is sleep apnea but often there are other culprits at work causing the bad sleep and the machine can't fix bad sleep if the cause is unrelated to sleep apnea itself. We so hope that the machine will fix all our problems and expect it to...only to find out it can't fix everything that is wrong.

Since this isn't a new problem totally popping up with the beginning of cpap therapy I have my doubts if any tweaking on the machine will impact sleep quality that much but one thing you might consider is apap therapy and the pressure range/variables. For some people even the slightest pressure changes during the night will impact sleep quality. If you look at your reports and you see a wide range of pressures being used then those changes might (stress might) be affecting sleep quality. Now if you look at your reports and your pressure rarely moves off of the 9 cm minimum then it isn't changing much so probably not being much of a factor but if you see it changing all over the place from 9 to 15...then maybe a change to either fixed pressure or a very tight range of pressures would be worth a try to see if it helps the sleep quality or not.

I sleep through some massive changes in pressure but there are others who find that the least little pressure change can affect their sleep quality...so might be worth looking into depending on what you are seeing on your pressure graphs.
Thanks so much for the feedback. I did read the blog, and found some useful info there.

cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Tue Aug 25, 2015 1:30 pm

Over two months now with little relief in terms of energy in a.m. or p.m. Here is last night's data. I did not sleep much after awakening around 7:30. But I got a good 7 hours of uninterrupted sleep with almost no events. I'm a bit baffled. I am taking provigil to help get me started in the a.m., and it does help some until it wears off. I take .25mg. of clonazepam in the evening to hopefully help with leg movements. It also helps some with sleep. If anyone looking at my SH screenshot has any ideas, let me know.

Image

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Sheffey
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Re: A couple of thoughts after 4 weeks on APAP

Post by Sheffey » Tue Aug 25, 2015 2:09 pm

Your leg movements (PLMD) may be bothering your sleep much more than you think. I would work on that since your CPAP therapy seems to be going well.

My doctor considers PLMD to be the same as RLS. PLMD is RLS that happens while sleeping.

First, have you had your serum ferritin levels checked? For RLS patients they need to be in the 100-200 range. If they are below 100, supplementation with ferrous sulfate should be undertaken.

Second, check this document for "triggers" and eliminate them - https://www.google.com/url?sa=t&rct=j&q ... Ll_U6zzRmg
cyclist56 wrote: I take .25mg. of clonazepam in the evening to hopefully help with leg movements.
Third, if your doctor prescribed this for RLS or PLMD, he is not keeping up to date. This once was the most commonly prescribed drug for RLS, but it has fallen out of favor some years ago.

Please read this document for current drug selection - https://www.google.com/url?sa=t&rct=j&q ... eF7eMn8TTg

Finding the right drug can be trial and error. My sleep doctor has a protocol which she uses to select drugs. If the first one isn't effective or the side effects are too bad, she knows what drug she will use for the second trial. I was fortunate that the second one I tried was very effective with few undesirable side effects.
cyclist56 wrote: I am taking provigil to help get me started in the a.m.
Fourth, the problem with Provigil is that it may still be in your system at bedtime and you may not realize it. It may be significantly interfering with your sleep. My doctor says, "Provigil has no off switch." She is very reluctant to prescribe it.

Fifth, Chicagogranny has a list of things anyone who is having trouble with sleep or energy level the next day needs to do. I can't find it now, but PM her for it.

Sixth, If you are a cyclist, notice that one of the triggers for RLS is heavy exercise. I am a cyclist and a bit of a gym rat. If I overdo either, my RLS/PLMD really bothers me at night.

Finally, if you do get a prescription for another drug for RLS (PLMD), I can give you some tips on minimizing side effects when you start treatment. Just post back in this thread and I will keep an eye out.
Sheffey

cyclist56
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Re: A couple of thoughts after 4 weeks on APAP

Post by cyclist56 » Tue Aug 25, 2015 2:49 pm

Sheffey wrote:Your leg movements (PLMD) may be bothering your sleep much more than you think. I would work on that since your CPAP therapy seems to be going well.

My doctor considers PLMD to be the same as RLS. PLMD is RLS that happens while sleeping.

First, have you had your serum ferritin levels checked? For RLS patients they need to be in the 100-200 range. If they are below 100, supplementation with ferrous sulfate should be undertaken.

Second, check this document for "triggers" and eliminate them - https://www.google.com/url?sa=t&rct=j&q ... Ll_U6zzRmg
cyclist56 wrote: I take .25mg. of clonazepam in the evening to hopefully help with leg movements.
Third, if your doctor prescribed this for RLS or PLMD, he is not keeping up to date. This once was the most commonly prescribed drug for RLS, but it has fallen out of favor some years ago.

Please read this document for current drug selection - https://www.google.com/url?sa=t&rct=j&q ... eF7eMn8TTg

Finding the right drug can be trial and error. My sleep doctor has a protocol which she uses to select drugs. If the first one isn't effective or the side effects are too bad, she knows what drug she will use for the second trial. I was fortunate that the second one I tried was very effective with few undesirable side effects.
cyclist56 wrote: I am taking provigil to help get me started in the a.m.
Fourth, the problem with Provigil is that it may still be in your system at bedtime and you may not realize it. It may be significantly interfering with your sleep. My doctor says, "Provigil has no off switch." She is very reluctant to prescribe it.

Fifth, Chicagogranny has a list of things anyone who is having trouble with sleep or energy level the next day needs to do. I can't find it now, but PM her for it.

Sixth, If you are a cyclist, notice that one of the triggers for RLS is heavy exercise. I am a cyclist and a bit of a gym rat. If I overdo either, my RLS/PLMD really bothers me at night.

Finally, if you do get a prescription for another drug for RLS (PLMD), I can give you some tips on minimizing side effects when you start treatment. Just post back in this thread and I will keep an eye out.
Thanks for the advice. i am an avid cyclist. Yesterday, I rode 44 miles. I also take Paxil, and that may contribute to PLMD. I don't have RLS. My leg movements are while asleep. No pain or discomfort of any kind. I'll check the resources that you've provided.