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kteague wrote:

Jimmycrackhorn wrote:... Are my hormones or T levels f--ked up?... Do I need to go to the doctor and get another sleep test to re-check my pressure titration? Do I have some weird disease that makes me tired or like I said is my chemicals and hormones and testosterone are ruined for over 10 years of not getting this treated? (I say weird because the doctors say I'm healthy as a horse. No problems whatsoever...)

Question - What tests has your doctor already done that prove you are healthy as a horse? I would hope an exhaustive round of testing preceded that declaration. A few tests come to mind - testosterone, blood sugar, thyroid function, Vitamin D, anemia, to name a few.

It may be that something in addition to the OSA is going on. That does not mean you should stop treating your OSA, but I understand your concern that your treatment may be causing what your feeling. If something is really off about your treatment that could happen. When I was overusing the ramp, I got worse instead of better. If you can muster the energy to investigate your data, it could help you avoid another sleep study. If not, maybe another study wouldn't be a bad idea. You shouldn't feel this bad without the doctors being able to pinpoint a cause. When my doctor gave me yet another negative test result in a dismissive tone, I finally told him to not stop until he had an answer. I don't know your history, but if you were diagnosed with OSA, you do need to address how to get effective treatment. Not treating it will just add trouble to trouble. The good thing about proven effective treatment is it can clear the picture to help identify remaining contributors. Good luck going forward.

We did the metabolic panel. Nothing came up. I did 1 two years in a row. Everything checks out "normal".

Ok. A metabolic panel is a standard screening tool and does contain some things your doctor should see for starters. Most tests have to be specifically requested and are not included in screening panels. It would not check for much of the list I mentioned before. Were other tests performed?

kteague wrote:Ok. A metabolic panel is a standard screening tool and does contain some things your doctor should see for starters. Most tests have to be specifically requested and are not included in screening panels. It would not check for much of the list I mentioned before. Were other tests performed?

No and my doctor is a young guy who gets insecure and defensive if I start trying to tell him, "Hey can I get tested for this or that?" because he thinks he's supposed to be the Doctor so I'm not supposed to go on the internet and do any research for myself.

Do you suggest I find another doctor? Because last time I saw him I left angry and promised I would never go back to him again. But I haven't found a different doctor because I kind of assume that the new one will be the same since I've been using medicaid.

Any suggestions on specific things I can get tested for or did you already list them?

Thanks.

Jimmycrackhorn wrote: We did the metabolic panel. Nothing came up. I did 1 two years in a row. Everything checks out "normal".

That's a bummer. I've done the metabolic panel too and nothing has come up. What I want to ask u is what do YOU think it is if you had to guess.

Do you need oxygen added? What do you feel like when you wake? Headache?

It really sounds like your therapy is not optimized. You really need to get that card reader, upload the data, and see what is going on. You could be having frequent events, clusters of events, really long events, etc. If you are using a range of pressures, that could be disturbing your sleep as some people are really sensitive to that. You need the nightly graphs so that you can see the clues and make adjustments.

Walmart and similar stores also carry the card readers. Anything that can read an SD card. Most are in the $10 range, so not very expensive at all.

zoocrewphoto wrote:It really sounds like your therapy is not optimized. You really need to get that card reader, upload the data, and see what is going on. You could be having frequent events, clusters of events, really long events, etc. If you are using a range of pressures, that could be disturbing your sleep as some people are really sensitive to that. You need the nightly graphs so that you can see the clues and make adjustments.

Walmart and similar stores also carry the card readers. Anything that can read an SD card. Most are in the $10 range, so not very expensive at all.

Agree with Zoocrew Jimmy. Please follow the above advice.

49er

Ok ladies and gentlemen. I will follow your advice and figure out the card reader thingy. But I have a year of data on that thing. Am I just gonna post it here or look for specifics or what? I suppose I have to read that tutorial.

To answer someone's question, my brain just feels like it's not all the way on. Like I need 1 or 2 more hours sleep. Usually I eat, meditate and fall asleep. Yesterday i crashed for about 3 hours and woke up at 8pm which is no good because then I'm up till 4am before I get to sleep. But for some reason during the day I get this really hevay restful sleep sometimes where I almost can't even drag myself out of bed and it feels so good, and it was WITHOUT the mask.

But now here I am, up, and tired not having gotten enough sleep and Unless I eat something or drink beer (which will crash me like a lightening bolt of sleep) I will most likely not be able to fall asleep again until later. My body is ready to go but my brain is lagging behind. Ya. It does kinda feel like I'm not getting enough oxygen if I had to guess. That's how my brain feels but I'm no expert.

Off to get the card reading.

Hi Jimmy,

The most important information is what is happening now that is keeping you from getting sufficient rest. So you want to start off by looking at the last few nights.

Pugsy has a wonderful sleepyhead tutorial here: viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html That will tell you what people need to see and how to post it.

We understand what it's like to be sleep deprived all the time and hope we can help get you over this hump.

Jimmy,

Your situation sounds similar to mine. Wear a neck collar to sleep. You can buy them at cvs or other pharmacy. For me at keeps my mouth closed, tongue stays in place, and nose breath. I sleep though night, no awakenings, and don't use cpap. Try this as you have nothing to lose. Report back how the sleep is.

Its been 13 months for me and I am wiped nearly everyday. I use SleepyHead and everything looks okay, but I still feel like crap. I figure this is just a chronic fatigue that I have to live with.

Just a thought that perhaps his average pressure is too low. Suggest that OP purchase an overnight pulse oximeter and monitor his 02 sats and desats- insufficient 02 might play a role in his tired state.

Of course, OP has not provided info as to his lab titration and optimal pressure derived from it...why should he be any different....

And he should clean up the language in his first post...use some tact- he may be offending people here and it does not conform to forum rules...ever heard of using 'euphemisms'?

Have you been back to your sleep medicine specialist. I don't get that impression. Are you being treated by someone who specializes in this field?

Not only does Pugsy have that helpful tutorial, you can also post your charts and graphs, if you still can't figure it out on your own.

KTeague is right in that getting effective treatment for OSA can eliminate that factor and allow you and your doctor figure what really is going on. But first you have to determine if your CPAP therapy is effective.

I have a few questions for you that might be helpful. Are you comfortable when you lay down to sleep? Do you feel anxiety about wearing your mask? When I started CPAP I had a huge amount of anxiety connected to wearing my nasal mask. Even though I was sleeping well, a good number of hours, good data etc. I still felt tired because I'd just spent the entire night feeling anxious. Anxiety and other discomforts (saggy mattress, overly tight mask straps, room too warm or cold, etc.) can cause you to feel unrested despite complying with treatment.

Being bone tired all the time is no fun and we can all relate to that on here. It's hard to get motivated and small things seem insurmountable. But you can conquer Sleepyhead. It is designed for the average person to use, not specialists or computer whizzes. If I did it, so can you! My computer savvy is zero and I didn't know what those charts and graphs were all about, but with help from the kind people here, I now peruse my data easily.

tedburnsIII wrote:Just a thought that perhaps his average pressure is too low. Suggest that OP purchase an overnight pulse oximeter and monitor his 02 sats and desats- insufficient 02 might play a role in his tired state.

Of course, OP has not provided info as to his lab titration and optimal pressure derived from it...why should he be any different....

And he should clean up the language in his first post...use some tact- he may be offending people here and it does not conform to forum rules...ever heard of using 'euphemisms'?

Ted,

With all due respect, you really need to give Jimmy a break as he was posting out of frustration and had no intentions of offending anyone. If anyone doesn't understand that, that is their problem and not his.

Since he has been struggling with therapy for a year, the lab titration and alleged optimal pressure may no longer be relevant, particularly since many times, recent ones aren't always an accurate indication of pressure needs since it is only for one night in a foreign area under less than ideal circumstances. I think he should use sleepyhead to post images of sleepyhead software perhaps three nights in a row to see where things stand currently.

49er

+1.