My Chart - Feeling Strange

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
SilverSleep
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Re: My Chart - Feeling Strange

Post by SilverSleep » Fri Aug 12, 2016 9:57 am

sleepychar wrote:I am concerned that whatever is going on may not have anything to do with your CPAP therapy... for you to be feeling so very bad... I'm thinking you might want to touch base with your physician about this... please take care of yourself...
I certainly agree and I have a team of doctors. A little (or big) backstory if it helps. Around 12 years ago I started getting dizzy and tired. I found myself stabbing myself in the leg with pencils during meetings to stay awake. I would get episodes of Sleep Inertia (which, I recently found out, is associated with Apnea). Due to my thin stature, doctors never thought Apnea was possible even though my girlfriend at the time told me that I would stop breathing at night. At this point, I think most people would say "Apnea!" but....

Everything got worse while the docs dismissed Apena. I was tested for MS, Lyme, etc. Had MRI's, CAT scans, Stress tests, everything. Every doctor said there was nothing wrong with me and it must be psychological (Anxiety). But, from my perspective, it was cyclical - felt good for a few days, felt bad for a few days, no measurable physical symptoms. Recently, my blood sugar and blood pressure have been rising despite my healthy eating and low BMI. The doctors ran the numbers and concluded that it was either Stress or Sleep Apnea. I got the sleep study done and, it turns out, I have apnea. Its the ONLY thing that has ever been diagnosed conclusively in my 12 years of searching. Also, most of my symptoms match Apnea and potentially, Anxiety due to the symptoms of Apnea.

It makes sense - and the fact that messing with my sleep via CPAP seems to make my symptoms worse - which is highly suggestive of a relationship between how I feel and Apnea. In the end, I have to address the Apnea (as its the only thing the doctors can say I am suffering from) and, well, I cant give up, I have two young kids that I love more than life and I want to be there for them.

Hopefully, with perseverance and, kindly, with the help of people like the ones on this forum, I will find a way to fix this and give help to the ones who come after me. Thank you!

EDIT: I thought quite a bit about the statement you contributed, I have spent endless hours thinking about my symptoms, causes, signs, etc. and, when it all comes down to it, I feel tired and unable to concentrate, which makes me anxious, which makes me more anxious, and so on. I *think* there are two things - the symptoms and the reaction to the symptoms. If my only true symptoms are Fatigue and concentration - and I can be sure I have apnea - CPAP is the most beneficial thing I can do, thoughts?

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sleepychar
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Re: My Chart - Feeling Strange

Post by sleepychar » Fri Aug 12, 2016 12:46 pm

I can see that you have thought about this alot - who wouldn't, after all, if you are feeling so crummy and nobody can explain why. I was not at all suggesting that you don't have sleep apnea that needs to be treated... just that something else may be going on as well. I understand how frustrating it is when doctors only look at the surface of things, such as overlooking your sleep apnea for all this time - especially when your wife was telling you that you were stopping breathing at night... it's enough to drive a person nuts!!! Hopefully some of the suggestions you have received and will receive here will prove helpful.
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SilverSleep
Posts: 31
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Re: My Chart - Feeling Strange

Post by SilverSleep » Fri Aug 12, 2016 4:53 pm

sleepychar wrote:I can see that you have thought about this alot - who wouldn't, after all, if you are feeling so crummy and nobody can explain why. I was not at all suggesting that you don't have sleep apnea that needs to be treated... just that something else may be going on as well. I understand how frustrating it is when doctors only look at the surface of things, such as overlooking your sleep apnea for all this time - especially when your wife was telling you that you were stopping breathing at night... it's enough to drive a person nuts!!! Hopefully some of the suggestions you have received and will receive here will prove helpful.

Thank you! The point of this all is: I have apnea and I need to treat it - my concern is that I shouldn't be feeling worse - the same or better would be logical. So I must be doing something wrong, any help anyone can offer on what I am doing wrong would be appreciated, thanks everyone!

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SilverSleep
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Re: My Chart - Feeling Strange

Post by SilverSleep » Thu Aug 25, 2016 5:18 pm

Quick update, still playing with my settings and averaging AHI ~3. Feel great for a few days and then I feel the worst Anxiety for a few days, its almost unbearable. Not sure how CPAP can INCREASE my daytime anxiety. I have no problems with the mask or the treatment as I am hopeful that it will help in the long-run. My anxiety has SKYROCKETED for 4 or 5 days in a row, then its gone. Cant find any trends in the data to indicate what might be causing this but hopefully I will find out the answer so I can post it in case anyone ever encounters this (and I pray that nobody does - it sucks).

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Julie
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Re: My Chart - Feeling Strange

Post by Julie » Thu Aug 25, 2016 5:50 pm

Work hard at figuring out what's causing the anxiety, but look beyond Cpap... however you might want to look at a pulse oximeter that records overnight oxygen stats (or desats)... like the 50D+ (the plus matters) to rule out 02 problems because low 02 can cause anxiety. What's going on in your life otherwise (for you to examine, not important for us to know ), and/or your general health. Not everything's about Cpap even if it gets affected by whatever's happening.

SilverSleep
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Re: My Chart - Feeling Strange

Post by SilverSleep » Thu Aug 25, 2016 6:39 pm

Julie wrote:Work hard at figuring out what's causing the anxiety, but look beyond Cpap... however you might want to look at a pulse oximeter that records overnight oxygen stats (or desats)... like the 50D+ (the plus matters) to rule out 02 problems . What's going on in your life otherwise (for you to examine, not important for us to know ), and/or your general health. Not everything's about Cpap even if it gets affected by whatever's happening.
Always do, Anxiety like this basically consumes all my thoughts 24/7 and I spend the majority of the time analyzing. I do have some confidence that my anxiety is OSA related. About 12 years ago this all started with me exhausted, I found myself poking myself with pens just to stay awake in morning meetings. Gradually, I developed panic attacks, then anxiety. For the past 12 years I have been searching for answers but really forgot about the initial onset extreme fatigue (learned to live with it I guess - or it improved a bit over time and it was overshadowed by anxiety). Then I had the sleep study, 14.4 AHI but 46 AHI on my back during REM.

Wont go in to details but, beyond starting CPAP (with very good initial results, anxiety was gone for a week or so, which is a big achievement for me, never went away for more than a day or two in the past), nothing new to report - my personal life is great except for this all-consuming issue.

Thanks for the thoughts!

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Julie
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Re: My Chart - Feeling Strange

Post by Julie » Thu Aug 25, 2016 6:49 pm

If you don't take meds for the anxiety, why not? If you do, which ones (some could interfere with Cpap or sleep).

SilverSleep
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Re: My Chart - Feeling Strange

Post by SilverSleep » Thu Aug 25, 2016 6:51 pm

Nope, no meds. I did try, many times, but they didn't work (which, according to my docs, is consistent with OSA induced anxiety). Looking for trends has been frustrating, kinda like Where's Waldo :
Light grey were rough days, dark grey were very bad days, bright green were excellent days
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Julie
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Re: My Chart - Feeling Strange

Post by Julie » Thu Aug 25, 2016 7:28 pm

It might be an idea... when you've had a really good night, write down anything you can think of that might have been related, whether different bedding, something you ate for supper, a phone call that stayed with you... anything at all, even tight vs loose headgear. And on bad days, do the same thing so over time you'll have (hopefully) a consensus... maybe things aren't so random after all (hopefully). Go get a journal!