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New -questions about symptoms and time to feel better
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quiescence at last Offline

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Machine: REMstar System One with Autoflex
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Post: #11
RE: New -questions about symptoms and time to feel better
I am "not everyone" and I do have leaks with FFM, but I am ok with them. I do not usually experience large leaks as sleepyhead rates them, but once in a while. I find other irritations actually are more sleep-disrupting, like tickles, build up of sweat, light skin irritation, etc. But, I am also lazy, not really trying to control these things much.

Still resistant to change.

Welcome to sleepyandsore. I think you'll find more peace when you know what your breathing is like and what, besides halting breathing, could be disturbing your sleep. You will go thru phases in your recovery. Post some info from your typical night when you can. And, relax, you ARE getting better sleep.

QAL

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
(This post was last modified: 05-23-2015 06:00 AM by quiescence at last.)
05-23-2015 05:57 AM
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sleepyandsore Offline

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Machine: ResmedAirsense10 autoset for her
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Post: #12
RE: New -questions about symptoms and time to feel better
Thank you QAL!

I appreciate your advice and encouragement. I will get some data onto the board soon. I am adapting to the FFM and seem to sleep through the night with it but wake up body stiff and sore still. Could that be from anything unrelated to sleep apnea? Has anyone else had body stiffness and soreness that went away after months eventually? I'm still tired during the day but it varies in intensity.

The data from the Resmed machine shows "smiley faces" everyday but I don't know if that's really all that accurate. I will take the data card out today and put it in my sleephead program to see what the last few days have been like.
05-23-2015 07:12 AM
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zonk Offline

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Post: #13
RE: New -questions about symptoms and time to feel better
(05-23-2015 07:12 AM)sleepyandsore Wrote:  The data from the Resmed machine shows "smiley faces" everyday but I don't know if that's really all that accurate. I will take the data card out today and put it in my sleephead program to see what the last few days have been like.
Smiley face tells us that leak is within acceptable range but you need to look into ResScan to see the data in details
Also, if you scroll down the sleep report on the machine, the data displayed in numbers (AHI, pressure, leak, etc ...) but you need to have "Essentials set to "Plus" from the clinical menu
05-23-2015 07:22 AM
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OpineCone Offline

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Machine: ResMed S9 Auto
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CPAP Software: ResScan SleepyHead

Other Comments: Mask straps spread widely to fit large head, worn under PureSom Ruby chinstrap for stability

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Post: #14
RE: New -questions about symptoms and time to feel better
(05-17-2015 09:25 PM)sleepyandsore Wrote:  I was just diagnosed with a home sleep study test on April 7th.
I have low blood pressure, not high, and have had burnt out adrenals over the years.
I've been tired for about 20 years though - and hope I've not been having sleep apnea that long. Would my health be affected permanently if that was the case?

(05-23-2015 07:12 AM)sleepyandsore Wrote:  I am adapting to the FFM and seem to sleep through the night with it but wake up body stiff and sore still. Could that be from anything unrelated to sleep apnea? Has anyone else had body stiffness and soreness that went away after months eventually? I'm still tired during the day but it varies in intensity.

Hi sleepyandsore,

I am not a doctor, but I wonder whether it might be a good idea to question yours as to whether your low blood pressure may make it more difficult to achieve adequate oxygenation of your tissues and major organs through sleep apnea treatment. This idea occurred to me because my eye doctor has suggested that my ongoing glaucoma symptoms may be caused by a combination of sleep apnea and aggressive use of medication to lower my blood pressure. He is referring the issue to my primary care doctor, citing recent research into hypoxia, hypoxemia and low blood pressure.

As for your question about whether you may have had sleep apnea for the last 20 years, my apnea doctor told me that it is very common for new patients to recall symptoms dating back to their childhood. (I probably had apnea for more than 50 years before it was diagnosed.) I asked the same question as you about possible permanent effects and was told that there is no general answer because each case is different. All the more reason to make sure that all of your doctors know about all of your symptoms, I think.
05-24-2015 04:29 PM
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sleepyandsore Offline

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Post: #15
RE: New -questions about symptoms and time to feel better
    here are some of the past few days sleepyhead screen shots - I would love some comments on them. They look OK and like my apnea events are dropping but I feel so tired still and achy - I guess its just a waiting game? Could thyroid and adrenal problems be because of apnea? Also, my hair has become dry and started to thin over the past few years. I also have horizontal ridges on my toenails.


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05-24-2015 06:03 PM
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sleepyandsore Offline

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Post: #16
RE: New -questions about symptoms and time to feel better
Hi Opinecone,

thanks for the suggestion - I don't have an appointment with the sleep doc til June 3rd unfortunately. I'm going to bring all that up with him then. I think I did tell him all my symptoms in the first appointment, but his focus seemed to be getting me on the machine and seeing what happened. I'm going to be a little more insistent about it this time. I have been tired most of my life - and prone to dozing off at inopportune moments. I would not be surprised if I have had some level of apnea for decades. My father has it and I heard it is partially genetic.
I'm really hoping to get my life back to a point where I can feel energy instead of depression and lethargy.
Thank you all for your support. It means a lot to know others have gone before me.
05-24-2015 06:11 PM
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OpineCone Offline

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Machine: ResMed S9 Auto
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10 Large
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CPAP Pressure: 11 - 17
CPAP Software: ResScan SleepyHead

Other Comments: Mask straps spread widely to fit large head, worn under PureSom Ruby chinstrap for stability

Sex: Male
Location: Massachusetts USA

Post: #17
RE: New -questions about symptoms and time to feel better
(05-24-2015 06:03 PM)sleepyandsore Wrote:  here are some of the past few days sleepyhead screen shots - I would love some comments on them. They look OK and like my apnea events are dropping but I feel so tired still and achy - I guess its just a waiting game? Could thyroid and adrenal problems be because of apnea? Also, my hair has become dry and started to thin over the past few years. I also have horizontal ridges on my toenails.

Hi sleepyandsore,

Although adjusting to sleep apnea treatment requires patience, it certainly does not have to be just a waiting game. You are already being more proactive than many by posting information here about your progress and asking questions in the hope that others will suggest possible answers. Keep up the good work!

Do you know what your nighttime blood oxygen levels were before you started CPAP treatment, and what are they now? This is why I'm asking. Before I started CPAP treatment, I endured many months - perhaps a year - of shockingly bad sleep. For at least the last 4 of those months I typically slept for only 4 hours and then awoke covered in sweat, aching all over, with an urgent need to breathe deeply, walk around, stretch, drink water, and keep doing all that for 30 to 60 minutes. Then, during the day and evening, I would frequently fall asleep in the middle of doing something, or experience bizarre states of being asleep and awake at the same time, etc. On the night of November 9, 2014, I completed an at-home sleep study wearing various monitoring equipment supplied by my doctor. The study showed I had all the symptoms of severe sleep apnea, including a significant drop in blood oxygen level, well, not just a significant drop, kind of mind-blowing really, down to 73% oxygen saturation. I've been reading this board avidly since I was diagnosed, and I have yet to see a report of a blood oxygen level as low as that. Then, as soon as I began CPAP treatment on January 16, 2015, my sleep agonies ended and I started to sleep soundly again. I purchased a drugstore pulse oximeter and developed the habit of measuring my blood oxygen level whenever I woke up. The lowest reading I saw was 93%.

Now suppose that your case is somewhat similar to mine except that some factor such as low blood pressure is preventing the CPAP treatment from restoring your blood oxygen level to the normal range, or alternatively is preventing normally oxygenated blood from adequately nourishing your major organs, muscles, tissues, brain, etc. Maybe that is the cause of your tired and achey feelings, which sound so much like my former nighttime distress events, and the reason why CPAP treatment alone has so far failed to relieve your symptoms.

Just an idea, but it might help you understand what could be going on with you. And the more you understand, the more productive your upcoming doctor visit is likely to be.

Good luck!
05-24-2015 09:55 PM
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retired_guy Offline

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Post: #18
RE: New -questions about symptoms and time to feel better
Sleepy, your charts are looking good. The only big issue I see is your mask leakage. So that needs corrected. You probably are mouth-leaking which means you need a gently applied chinstrap. I don't remember if we've had this discussion before, but let's do now.

You can use something as simple as an ace bandage to begin with. It does not, and should not be attached so tightly that it hurts your jaw. You should be able to open your mouth, talk if you want to, or whatever. It's just that when you go to sleep it is a little easier for your jaw to spring forward than to fall back. That way your tongue finds it's place at the roof of your mouth to make the air-seal.
05-24-2015 10:00 PM
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sleepyandsore Offline

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Post: #19
RE: New -questions about symptoms and time to feel better
wow! 73% is really low
my oxygen level during my at-home sleep study fell to as low as 84%. I did buy a pulse oximeter and my oxygen levels seem to stay around 95% or above. But I have not been waking up in the middle of the night to check them then, when its likely to be lowest. I am only sleeping about 6 hours a night - wonder if that's a problem in itself? I tend to go to bed late and wake up early because I have farm chores that need doing in the morning. I'm also so used to not going to sleep early I think because for years subconsciously I knew that sleeping was dangerous ( had anxiety around bedtime which seems to be easing a little)

i do have a wrap for my jaw/head/mouth - a wide elastic that the nurse gave me when I was set up with the machine. I have zero problem wearing it and falling asleep, but I have a feeling I am still mouth breathing - although I am training myself to breath through my nose as much as possible.

Has anyone used a dental appliance and had luck with that?

I am also thinking of asking for an in hospital sleep study to see if they can pinpoint whats happening with the achy muscles etc... but I don't know if insurance will be willing to pay for it.
05-25-2015 10:29 AM
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OpineCone Offline

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Machine: ResMed S9 Auto
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Other Comments: Mask straps spread widely to fit large head, worn under PureSom Ruby chinstrap for stability

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Post: #20
RE: New -questions about symptoms and time to feel better
Do your aching muscles happen mostly in the morning, or do they last all day? If they occur all the time, be sure to tell your doctor because this may indicate that there is a cause other than sleep apnea. If there is another factor besides apnea, you may need other testing rather than a sleep study.
05-25-2015 11:30 AM
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