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Newbie experience and questions
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JohnLL Offline

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Post: #1
Newbie experience and questions
I cannot tell you how happy I am to find this site!!!

I started cpat a little over a year ago, and after a rough start, it has been good for me. I never felt fatigued and had a sleep study because my ankles were swollen and red. The vascular doc found no problem and the cardiologist said my heart was fine so the next step is to get a sleep study. I did not do it. A few months later a hematologist found my hemoglobin was dangerously high. He told me to give blood today and get a sleep test.

I am sure he explained it to me in medicine for dummy terms- but that is more than most Docs will do. Too much hemoglobin means your blood is too thick and you are in danger of a clout and stroke. With sleep apnea your body senses there is not enough oxygen in your blood and may think the problem is there is not enough blood. Your body makes more blood, your veins are thin walled, and after they stretch to capacitance they past some of the more liquid elements of your blood into your body through their walls. It happens in your ankles because that is where veins are most stressed trying to return blood uphill back to your heart. The sleep test will determine if you have sleep apnea, and many things can cause ankle swelling, but elevated hemoglobin narrows the possibilities. The above assumes I remember it right

My first sleep Doc did not believe this. My second Doc thought it sounded plausible. Has anyone else been told swollen ankles are the consequence of sleep apnea? BTW cpat reduced swelling dramatically but it has not disappeared. BTW-2 I did not realize I was sleep deprived before cpat and now I do.

I have another oddball issue . With a nasal mask periodically air blows out my tear duct. My pressure is at 15 and the mask was a Mirage FX. It happens on nights when I am not congested, starts later in the evening, and is always left eye only. It is unlike a typical leak in that it is a momentary puff and 2 to 20 seconds later another. I will admit I am not 1000% certain it is not a mask leak but I am certain it is at the corner of my left eye. A Fitlife mask solves the problem but leaks terribly. Anyone else have a tear duct issue?

I will have some questions regarding my 1-2 AHI coupled with a high leak rate but I need a few weeks of Sleepyhead data first. Very happy to find this place as my sleep docs were a disappointment.
11-26-2013 09:05 PM
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PaulaO2 Offline
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Post: #2
RE: Newbie experience and questions
Welcome to ApneaBoard!

Go ahead and ask any questions ya got.

As for the tear duct, not heard of air coming out but have heard of it causing pressure so more water comes out. Or gets blocked. I had tear duct issues when I was trying to use nasal masks but that was due to leaks. All the leaks were aimed right at my eyes and one of my eyes dried out fairly bad. I had tear duct problems for a few days.

As for the swelling, yes, I've heard it can happen with sleep apnea but not heard it explained quite that way before!

PaulaO2
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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.
11-26-2013 09:15 PM
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trish6hundred Offline

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Post: #3
RE: Newbie experience and questions
Hi JohnLL,
WELCOME! to the forum.!
Hang in there for answers to your questions.

trish6hundred
11-26-2013 09:18 PM
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Regular Joe Offline

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Post: #4
RE: Newbie experience and questions
Chances are it is your hematocrit that is too high. "Too many red blood cells" would cause you 'crit to be elevated and your high hemoglobin is a consequence of too many red cells. It's called polycythemia. It can be hereditary or secondary (caused by medicines or other conditions) Giving blood regularly will help tremendously. CPAP is one of the few things us humans can do to prolong our life a little.
(This post was last modified: 11-26-2013 09:34 PM by Regular Joe.)
11-26-2013 09:33 PM
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Tez62 Offline

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Post: #5
RE: Newbie experience and questions
Welcome JohnLL, glad you found us too, alot of us including me used to get freezing cold hands and feet from the sleep apnea, our blood rushes from the extremities when we have an apnea to our vital organs, our hearts and brains as part of the 'fight or flight' response. Prior to being diagnosed, in the middle of a hot summer with night time temperatures around 30c my feet would freeze, I used to wear two pair of thick socks, have a heated throw on and a doona and blankets and my feet would still be cold. It is the worst feeling every so have a bit of an idea how you feel. Since being on CPAP nearly 3 years ago all that has gone.
(This post was last modified: 11-26-2013 10:50 PM by Tez62.)
11-26-2013 10:49 PM
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JohnLL Offline

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Post: #6
RE: Newbie experience and questions
Thanks to all for the replies! I personally believe in the swollen ankle /apnea connection from my personal experience but it appears others have not had this experience so...? I consider it interesting but perhaps not practically material for others.

The issue of the nasal mask generating enough pressure to blow through my left tear duct has practical significance for me. I had two nasal operations as a child so my sinuous are not exactly OME. I went for several months thinking this may be possible before I goggled up others experiences. I am not alone in my experience or maybe delusions. I am not certain.

I am getting strange numbers from my System One 2009-211 machine. My AHI readings are 1-2, but my major leak reports are mostly 70-90% but they were 11% last night. I wiped all the data (corrupted? ) off the machine and I will start fresh tonight for several weeks. Again thanks to all!
11-27-2013 07:14 PM
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jgjones1972 Offline

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Post: #7
RE: Newbie experience and questions
I had swollen ankles really bad...edema. Swelling went way down after the first night on CPAP, was completely gone after about a month. I was surprised that the swelling had anything to do with untreated apnea, so I googled it. It turns out it is pretty common. The explanation I found was closely related to the explanation for untreated apnea causing nocturia - excess fluid being dealt with...this is the first time I've heard it put the way you did - but regardless of the explanation of what's happening, it does happen and I've heard from several others who had severe edema that was eliminated by CPAP therapy.

I've also heard about the possibility of air exiting through a duct in the eye and if I'm not mistaken, I think it signals that there may be a problem. I've heard that a Total Face Mask will help because it eliminates the pressure differential, but if it would probably be good idea to check with your doc...maybe get a referral to a good ENT.
11-27-2013 08:32 PM
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Blaifarm Offline

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Post: #8
RE: Newbie experience and questions
Wow, maybe that's one of the reasons my pcp asked if I would be willing to take a sleep study.
11-28-2013 07:23 AM
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jgjones1972 Offline

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Post: #9
RE: Newbie experience and questions
(11-28-2013 07:23 AM)Blaifarm Wrote:  Wow, maybe that's one of the reasons my pcp asked if I would be willing to take a sleep study.

I know someone who had a sleep study and was diagnosed because an eye doctor wrote a letter to her PCP suggesting it because the particular eye problems she had indicated a likelihood of apnea - no kidding...and this was very recently. She had originally been sent to this eye specialist by another eye doctor who thought her eye problems were thyroid related. She said that this eye doctor gave her an exam and the first thing he asked was "do you have sleep apnea".
11-28-2013 10:03 AM
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Blaifarm Offline

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Post: #10
RE: Newbie experience and questions
(11-28-2013 10:03 AM)jgjones1972 Wrote:  
(11-28-2013 07:23 AM)Blaifarm Wrote:  Wow, maybe that's one of the reasons my pcp asked if I would be willing to take a sleep study.

I know someone who had a sleep study and was diagnosed because an eye doctor wrote a letter to her PCP suggesting it because the particular eye problems she had indicated a likelihood of apnea - no kidding...and this was very recently. She had originally been sent to this eye specialist by another eye doctor who thought her eye problems were thyroid related. She said that this eye doctor gave her an exam and the first thing he asked was "do you have sleep apnea".

My pcp asked me for two or three years if I would be willing to take a sleep study test and like a complete fool I finally agreed and have been diagnosed with mild sleep apnea. I reckon it was a combination of my ailments that was causing her to do so. I want to ask her reasoning the recommending the test.
11-28-2013 10:14 AM
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