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extremely tired all the time. need advice.
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kwhenrykerr Offline
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Machine: DreamStation Auto, AirSense 10 Auto
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Location: Florida

Post: #51
RE: extremely tired all the time. need advice.
I posted a mask question It may help

http://www.apneaboard.com/forums/Thread-...#pid172786

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
08-17-2016 02:14 PM
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dorlow Offline

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Post: #52
RE: extremely tired all the time. need advice.
So, an update. I saw a specialst ENT doc. I explained to him my absolute hate towards the CPAP. If someone told me I would die next week guaranteed if I didn't use the CPAP, I probably would give in and use it... but I would think really hard about it and still look for alternatives.

So, with everyone knowing how much I hate the CPAP... I saw an earlier post about all the adjustments to help me like it. What I hate the most about it is the hose. I can't stand the hose. No way to get rid of that. So, not sure how to get past that one. The hose feels so unnatural.

But, I saw the ENT doc. He numbed my nosterals and then stuck a camera up my nose and down my throat to see where the blockage is at. It turns out my blockage is at the bottom of my neck. I don't know exactly what it's called. But even when I'm awake and wasn't talking while he had the camera there, I could see and he re-stated, my airway is very small. Only when he asked me to speak did it open up to allow a decent amount of air into my lungs.

I told him I lost about 40 pounds recently and upped my exercising where exercising is a large part of my non-professional work part of my day now. (Wasn't before at all. I was totally anti-exercise over a year ago.) He basically said no matter what I do, it will never fix this because me being overweight isn't the cause of my apnea.

I asked him about surgery and he said there was no surgery he could recommend that he thought would help much of anything. It's my genetics.

But then we talked again about my absolute hate for the CPAP and refusal to use it. When I did use the CPAP a few months back for a year straight with very high compliance... doc said everything was wonderful, numbers great etc and still I was just as dog tired and I basically see 0% improvement when using the CPAP vs not using the CPAP.

I then asked him about what his professional opinion if I decided to not use the CPAP, what would it do to my life expectancy. He said there are many people that go their whole life and not know they have sleep apnea and they live full lives. So, not treating it doesn't mean I will die young or any sooner that if I didn't use it.

So, today as I go through my day absolutely dog tired.... can't wake up. Does anyone know of a specialist for the throat that might have some alternative treatment that could fix my lungs so when I'm at rest (even awake), my lungs don't collapse? BTW, I live in the Nashville, TN area. Does anyone have any other suggestions?
(This post was last modified: 09-10-2016 10:27 PM by dorlow.)
09-10-2016 10:17 PM
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PoolQ Offline

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Post: #53
RE: extremely tired all the time. need advice.
It's good to see you back here again. Any reason to think you might have COPD? Makes it difficult to breathe while awake, sort of like apneas are happening while awake. Also can make it difficult to go to sleep Pretty simple test in the respiratory lab.
09-11-2016 12:46 AM
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OpalRose Offline

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Machine: PR System One REMstar Auto 560 with A Flex
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Post: #54
RE: extremely tired all the time. need advice.
Yes, it's good to see you back....but have to wonder, have you changed your mind on using Cpap?

You first joined here in 2014, and stayed away until July of this year. That's two years of complaining and being tired. That doesn't make sense to me. You already know you have sleep apnea.

You also stated in July that you didn't want advice from die hard Cpap believers. You stated you wouldn't use it no matter what.

None of us like the hand that we have been dealt. But thank God, there is Cpap therapy that can help us live a little better.

I believe you know you need help and need to be on Cpap therapy. If you want advice on ways to be successful, then we will try to help, buts it's up to you.

OpalRose
09-11-2016 06:58 AM
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dorlow Offline

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Post: #55
RE: extremely tired all the time. need advice.
I've been on the fence about using the cpap. I saw with my own eyes why the cpap is the only device that would keep my airway open at night. But, at the same time, during the day, my airway closes to where it's barely enough to breath. During the day, I feel really fog headed but if I breath really deep, I think clear. The scope test shows even when I'm awake, I'm not getting the oxygen I need unless I'm talking. So, really a cpap only fixes it for 1/3 of my life... not the other 2/3 of my life when I'm awake and still having the problem.
I wonder if there is a doc anywhere that could implant some kind of sleeve in that spot of my lungs to permanently hold my lunges open. Anyone ever heard of such a thing?
(This post was last modified: 09-11-2016 08:41 AM by dorlow.)
09-11-2016 08:39 AM
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OpalRose Offline

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Posts: 3,181
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Machine: PR System One REMstar Auto 560 with A Flex
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10 For Her
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CPAP Software: SleepyHead EncoreBasic

Other Comments: Started CPAP Therapy October 23, 2014

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Location: Northeast Ohio, USA

Post: #56
RE: extremely tired all the time. need advice.
I would seek out a Pulmonologist or a sleep specialist that can direct you to one. They will put you through some testing and help put your mind at ease about you lungs.

If you have a problem breathing during the day when you are awake, then a Pulmonologist can address that too. You may need supplemental oxygen. Only your doctor can advise on that.

OpalRose
(This post was last modified: 09-11-2016 09:01 AM by OpalRose.)
09-11-2016 09:01 AM
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Sleepster Offline
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Machine: ResMed AirCurve10 VAuto
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CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

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Location: Houston, Texas

Post: #57
RE: extremely tired all the time. need advice.
Hi dorlow. Can you help me understand something you said?

(09-10-2016 10:17 PM)dorlow Wrote:  What I hate the most about it is the hose. I can't stand the hose. No way to get rid of that. So, not sure how to get past that one. The hose feels so unnatural.

At first I was going to recommend that you allow yourself some time to adapt. It's rather like Huck Finn's objection to "civilized" clothing.

But then I saw that you said this ...

Quote:When I did use the CPAP a few months back for a year straight with very high compliance... doc said everything was wonderful, numbers great etc and still I was just as dog tired and I basically see 0% improvement when using the CPAP vs not using the CPAP.

I don't understand how you could hate the hose so much that it prevents compliance, but then use it for a year. Did you hate it but make up your mind to tolerate it?

If so, that's your solution. You simply psych yourself into believing that you can tolerate something despite your hatred of it. There are many things in life that are in that category. We all hate some things, but do them anyway because it's necessary for us to be able to enjoy something else.

It appears your dilemma consists of the following two ways to go.

Way 1. You don't see any potential benefits to keeping your airway open while you're asleep.

Way 2. You do see the possibility of potential benefits to keeping your airway open while you're asleep.

Quote:So, today as I go through my day absolutely dog tired.... can't wake up. Does anyone know of a specialist for the throat that might have some alternative treatment that could fix my lungs so when I'm at rest (even awake), my lungs don't collapse?

The lungs are not collapsing, it the entry way to the lungs that's collapsing because it takes voluntary (as opposed to involuntary) muscle control to keep it open.

If you see no benefit to keeping that airway open when you're asleep, then I don't understand your dilemma. You simply go with Way 1, do nothing about your airway collapse, and seek other causes of your constant fatigue so that they can be remedied.

On the other hand, if you're going with Way 2 then you suck it up and use the CPAP machine. Meanwhile you can seek other remedies to treat your collapsing airway. You can also seek other remedies to your constant fatigue.

You appear to be using your search for alternative treatments as an excuse to not use your CPAP machine.

Behavioral therapy has helped me deal with lots of these types of issues. You might want to consider doing that. It takes courage, though, to open yourself up to someone else in an effort to solve problems that in our own minds "shouldn't" exist.

If you don't want to take my advice you can simply ignore it. Or you could lash out against it. Your choice.

Sleepster
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www.ApneaBoard.com


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.
09-11-2016 10:58 AM
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dorlow Offline

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Post: #58
RE: extremely tired all the time. need advice.
My lungs are collapsing or close to even when I'm awake...read my last post. Saw it first hand when the doc stuck a camera up my nose and down my lungs.
09-11-2016 11:08 AM
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Sleeprider Online
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Post: #59
RE: extremely tired all the time. need advice.
For the hose, a fleece cover helps a lot, and there are very flexible 15mm diameter hoses that can make it much less obtrusive. Check out Slimline tubing.

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09-11-2016 11:39 AM
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Sleepster Offline
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CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #60
RE: extremely tired all the time. need advice.
(09-11-2016 11:08 AM)dorlow Wrote:  My lungs are collapsing or close to even when I'm awake...read my last post. Saw it first hand when the doc stuck a camera up my nose and down my lungs.

This is what you wrote ...

(09-10-2016 10:17 PM)dorlow Wrote:  It turns out my blockage is at the bottom of my neck.

You found something to disagree with, and then shut down, ignoring the rest of the message.

Your airway collapses unless you make an effort to keep it open. You cannot make such an effort when you're asleep, but a CPAP machine will do the job for you.

If you're not getting enough oxygen during the day because of a restricted airway, then seek a remedy for that.

Meanwhile, make a decision about the CPAP therapy. Either it's something you're willing to do or it isn't.

Sleepster
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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.
09-11-2016 12:22 PM
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