Apnea, low morning oxygen and panic . . .

I have positional sleep apnea but do not tolerate CPAP or Auto-pap well due to extremely dry mouth which is worse now after surgery to correct long-term acid reflux which burned my mouth and throat.

I awaken very early even wearing CPAP or Auto-pap. I am only a little over 2 weeks out of the surgery I had and the GERD/reflux was very bad and made my apnea worse. I thought it would help the apnea to have the GERD corrected but so far it hasn't even though the GERD is gone and I'm very grateful.

My question is:
Does anyone here with positional (or other) sleep apnea awaken each morning with rapid heart beat, the need to yawn over and over to get enough air/oxygen. Does anyone continue to feel very tired and sleepy right after waking even with CPAP and/or oxygen and if so what have you done about it?

My heart, lungs have been thoroughly checked out and they are fine. All other health tests are up to date and are good.

I just takes me all day long to get any energy back after the terrible fight I have trying to sleep between 4 and 6 am when I finally wake up exhausted.

I'm at my wit's end. Just had a 24 hour pulse ox and watched it go down to 89 while I was wide awake in the daytime. My pulse also goes up about 90 pts when I get up and move around and I tire very easily. Blood work etc is fine.

As far as anyone knows positional sleep apnea, not sleeping well even on equipment/oxygen is the only thing wrong with me.  

Thanks and HELP!

[CrohnieToo]

Okay, lets start back at square one. What were you doing when your 02 saturation dropped to 89 while awake during the day? What had you been doing just prior? Do you have asthma? Allergies? Do you smoke? Are you around second hand smoke?

A heart rate of 90 is not out of line when awake and moving around during the day. How old are you?

How were you Dx'd w/positional sleep apnea? Since you mention CPAP and APAP I assume you have had an in-lab sleep evaluation PSG and an in-lab CPAP titration PSG. Do you have a copy of the doctor's dictated results (1-2 pages each)from both in-lab studies AND the full scored data summary report w/condensed graphs (5+ pages each) from both in-lab studies?

Most people experience most of their sleep apnea episodes when sleeping supine (on their back) and in REM sleep. I am therefore assuming you had most of your episodes whilst sleeping on your back. Have you raised the head of your bed 4 inches? Have you tried knotting some socks and basting them to the back of your PJ top to discourage sleeping on your back? There is even a sleep vest or sleep jacket that you can purchase that discourages sleeping on your back.

What brand and model CPAP do you have? What brand and model APAP do you have? What was your CPAP pressure setting? What pressure range was your APAP set for? Which mask(s) have you used? Did you try a full face mask? A nasal cushion or nasal pillows mask w/a chin strap? What is your Leak rate w/the CPAP and APAP. High leaks whether mask leaks or mouth leaks can interfere w/your PAP therapy causing the PAP to provider higher and higher pressure to compensate for the leaks.

Were you provided w/an integrated heated humidifier w/your CPAP and APAP? Have you tried adjusting the humidity up or down? Have you tried Biotene (substitute saliva) for your dry mouth?

Were you given or did you ask for a printout of the full data download from your CPAP and APAP?

I assume your thyroid has been checked since you said everything has checked fine other than your not sleeping well.

Have you tried improving your sleep hygiene? Are there any indications that you might have narcolepsy? Is there any mention of periodic leg movements are restless leg syndrom (syndrome) in your sleep study results?

[CrohnieToo]

I forgot to ask: do you have a copy of your equipment order (prescription) for both the CPAP and for the APAP?

[Halloweenbaby1946]

Wow! Such a lot of questions lol but I do appreciate your taking time to ask them.

My health is great other than the sleep issues. I've had three in-depth overnight sleep studies. During all three the apnea was only on my back. It is now occurring at times on my side.

I do sleep with supplemental oxygen and with a humidifier on my auto-pap. I'm way past the sleep jacket with the box on the back which my pulmonologist suggested. It threw me onto my face and made breathing impossible.

I just had surgery and could not sleep the first night. Their oxygen alarm sounded each time my oxygen sent below 89 and it went off all night long. It sounded at the precise moment I was falling asleep and kept me from having a full night's rest.

I've had every mask humanly possible to locate, CPAP and now APAP and even though my setting on the CPAP was low at only 8, the number of apneas really concerned my pulmonologist. My APAP goes down to 5 and up to about 12 - I just got it and don't remember for sure.

Thyroid is fine. We have a $4900 adjustable bed and I've used it for years to adjust my side. No restless legs - hubby has those. No narcolepsy - hubby has that too.

It's a mystery.

[Halloweenbaby1946]

Oh - I do not smoke; never had. When the oxygen went down to 89 I was sitting in my recliner watching HGTV. I don't inhale second hand smoke and don't even have hay fever.

[CrohnieToo]

Ha! I'm on supplemental 02 w/my PAP as well. But I have a known reason for my need for the 02 supplementation, I have COPD.

Okay. Now we are getting somewhere? What brand and model APAP do you have? That is important for us to know. Which mask you are using, or at least what style of mask, is also important.

So your APAP pressure range is set 5 to 12. That's good. Some doctors start you out on APAP wide open 4 to 20 (not too smart of them).

Have you tried adjusting the humidity up or down?

Assuming you have one of the two leading brands of APAP: Resmed S9 VPAP Auto or PR SystemOne BPAP Auto, they are both fully data capable. The PR SystemOne has a patient version of the software called EncoreViewer 2 which sells for about $100 online. The Resmed professional software is available online at no cost w/a little ingenuity and diligent searching. You need a full download of data to find any leak problems.

High leaks whether mask leaks or mouth leaks can interfere w/your PAP therapy causing the PAP to provider higher and higher pressure to compensate for the leaks.

Were you given or did you ask for a printout of the full data download from your CPAP and APAP?

Do you have a copy of the doctor's dictated results (1-2 pages each) from all your in-lab sleep evaluation studies AND the full scored data summary report w/condensed graphs (5+ pages each) from all your in-lab studies?

No one has a more vested interest in your health and your sleep than you do. You are the one to endure the benefits - or consequences - of any procedure, therapy or test you undergo. We have to be our own best advocate. And for that we need knowledge. Keep on educating yourself. There are several excellent apnea support forums on the web.

Sleep apnea is usually due to an antomical problem, not a pulmonary problem. Have you seen an ENT for an assessment of your mouth, tongue, palate, jaw, nose? Are you considerably overweight? Do you have a short neck or a thick neck?

[Paderla Anitha, DNB]

Hello and hope you are doing well.

Therapy for Obstructive sleep apnea is CPAP or BiPAP, but since you are unable to sleep well, you may have to think of other causes, like other sleep disorders. But these could have been detected in sleep studies. To begin with, you should stop becoming anxious and try to relax. Try to have a warm bath before sleeping. Have a glass of milk or read a book before trying to sleep. Don’t watch TV or do exercise before sleeping. Condition yourself that you can relax and that you can sleep well. And adopt good sleep hygiene measures like going to bed at the same time, waking up at the same time, avoidance of alcohol, smoking and caffeinated beverages. Maintain warm, comfortable bedroom environment and engage in relaxing activities like a warm bath before bed time.

Hope this helped and do keep us posted.

[Halloweenbaby1946]

I use an auto-pap with oxygen and humidifier and still awaken exhausted on the nights I'm able to use it due to dry mouth and bleeding nose.

I'm still very acidic after having corrective surgery on my stomach/esophagus for GERD three weeks ago and I still awaken early and unable to breathe well.

My oxygen goes down in the late afternoon when the swelling from my surgery is at its worst for the day and then I begin to feel better till about midnight when I turn in for the night.

We thought the GERD was the main contributor till it was fixed with surgery and the early-morning awakening continues to occur.

I sleep well through the night with just oxygen supplementation but awaken every single day with rapid heartbeat and a sour stomach. I do have too much bile due to gall bladder removal and will be addressing that subject with my GI doc as soon as I'm strong enough after this surgery.

I DO however have sleep apnea. Have had three sleep studies and am doing what I'm supposed to do when I am able to do it. Right now I cannot sleep on my autopap due to the severely dry mouth at night. It's like someone torches my tongue and throat during my sleep. It is literally still burning through much of the day.

It's a mystery . . .

[CrohnieToo]

Have you tried Biotene Saliva Substitute?? You can find it in any pharmacy. That should help w/the dry mouth and burning tongue and throat. Gargling w/salt water can help the throat. Ayr Saline Nasal drops or spray or even the gel can help w/soothing and toughening up the nasal passages.

Is the humidifier on your 02 concentrator or on your APAP? IF it is on your APAP have you adjusted it up or down? Surpisingly, on occasion, down works better for some than others. But that is somewhat unusual so try up first.

Look you still haven't said which brand and model APAP you are using. The APAPs are usually fully data capable and some provide easy access to and quite a bit of data via the LCD screen. If you would tell us what brand and model APAP you are using we could tell you whether you will be able to access your nightly data and how. And whether the software is available to allow you acccess to even more of your data.

I seriously doubt that you have tried every mask humanly possible to locate!!! There are 4 basic styles of mask: full face, nasal cushion, nasal pillows and oro-nasal and w/in those styles there are a mass of brands and models. Once your pressure needs have been established the MASK becomes the KEY to successful PAP therapy. I went thru a good dozen early on before I found one that worked fairly well for me. But I occasionally tried others and in doing so found one that works even better for me. I've probably been thru a good 20 or so masks by now. I've lost count.

Fisher & Paykel, Resmed and Respironics all offer FREE replacement to the DME providers most any of their masks that patients have tried and been unsuccessful with IF the provider will fill out a form and return mask and form to the manufacturer W/IN 30 DAYS. Occasionally you will encounter a local DME provider who has to be made aware that YOU are aware of that and thus should have no problem w/exchanging masks UNTIL you find the mask that works for you.

How long has it been since your surgery?? Are you grossly overweight?

[CrohnieToo]

Sorry 'bout that. I forget you told us already that its been 3 weeks since your surgery.

[azmanatheart1278]

Hi,
I too have suffered with Severe, mostly Positional SLeep Apnea.  From experience, I sounds like there are 2 things you might want to check into:
1.  Look at your sleep studies and see how much time you spent in Stage 3/4 Delta (restorative) sleep.  In 4 sleep studies, I have never achieved Stage 3 sleep, I get into REM no problem, and I believe that is one of the causes of my grogginess and brain fog every morning, regardless of how few AHI events I've had.
2.  Your mask- whether it is a nasal mask or full face mask (like me) try using those thin cotton pads between your face and your mask.(Google REMZZZ)(no I'm not affiliated, I spent years trying caulk, denture strips, etc.. to get a good seal) I was amazed at how much such a simple thing made the mask more comfortable, reduced leaks, and facial soreness.

This is just the tip of the iceberg, and I dont want to make this about me, so good luck, sounds like sidesleeping comfortably with a properly humidified APAP w/data capability will do wonders for you.  I've heard it takes anywhere from a few days to 6 months to undue any damage that constant oxygen deprivation does to you, so hang in there.
Jeff