Newly Diagnosed

Hi folks, I’ve been clicking through posts today as I try to understand my situation. I get it that we’re all different and we all react in our own way but knowing that isn’t helping me.

A quick rundown of my year - I had successful spinal fusion in December which worried me since it’s pretty much of a crapshoot but I couldn’t put it off any longer. The good news, it was successful, no more pain. I was one happy guy. Then I had a nasty bout of bronchitis which was pretty common with me. It took a while to get past that and my PCP sent me to a pulmonologist who diagnosed me with COPD. Not good news but not all news is despite our desires. Since my O2 level was low after a sleep oximitry test I was put on oxygen at night. Everyone said I’d feel great. I didn’t. Next was the sleep test that showed I have OSA. I got the gear and everyone said I’d feel great. Nope, I feel worse.

Depression has been part of my life but well controlled. Now I’m more depressed, wake up with a headache, wake up during the night for a bathroom visit and put my mask back on and go back to sleep. Still feel lousy when awake. Worse than before the CPAP. It doesn’t make sense to me at all. I snap at my wife, have little interest in anything, take naps, etc. so much for feeling better!

Anyone have similar experiences? What the hell is going on?

TIA!

Let's first make sure your therapy is optimal. Hopefully you have a full data machine and can use available software to review your results.
https://sleep.tnet.com/equipment
Exactly what brand and model of machine are you using?

Some other questions
How many hours of sleep are you averaging?
Are those hours fragmented because of a lot of wake ups?
Do you take any medications of any kind?
How long have you been using the cpap machine?
Do you know what your pressure settings are? If so, what? If not, once we know which machine you are using we can point you to a manual so you can figure it out.
Do you have a copy of your sleep study diagnosing sleep apnea?
Did you have a sleep study with the mask and machine on so they could try to find optimal pressure?

Yes, unfortunately some people report feeling worse. It's usually because either their therapy is sub optimal or their sleep is highly fragmented for some reason or they aren't getting enough hours of good sleep.
It's rough...while we might not expect immediate marked improvement we sure don't expect to feel worse...but it happens to some unlucky folks. Not everyone takes to cpap therapy like a duck to water.

cxs wrote:Hi folks, I’ve been clicking through posts today as I try to understand my situation. I get it that we’re all different and we all react in our own way but knowing that isn’t helping me.

A quick rundown of my year - I had successful spinal fusion in December which worried me since it’s pretty much of a crapshoot but I couldn’t put it off any longer. The good news, it was successful, no more pain. I was one happy guy. Then I had a nasty bout of bronchitis which was pretty common with me. It took a while to get past that and my PCP sent me to a pulmonologist who diagnosed me with COPD. Not good news but not all news is despite our desires. Since my O2 level was low after a sleep oximitry test I was put on oxygen at night. Everyone said I’d feel great. I didn’t. Next was the sleep test that showed I have OSA. I got the gear and everyone said I’d feel great. Nope, I feel worse.

Depression has been part of my life but well controlled. Now I’m more depressed, wake up with a headache, wake up during the night for a bathroom visit and put my mask back on and go back to sleep. Still feel lousy when awake. Worse than before the CPAP. It doesn’t make sense to me at all. I snap at my wife, have little interest in anything, take naps, etc. so much for feeling better!

Anyone have similar experiences? What the hell is going on?

TIA!

XPAP doesn't work until your treatment is correct. Many Ducks have to line up for that to happen. Throwing the mask on and starting the machine usually doesn't make for success. That's why we need machines that collect full data, and the software to read it. That's the steering wheel they don't tell you about, they think they can drive for you, some don't even care if you hit the trees.

So you need to fill in your profile in text not iconny, your XPAP correct model, your mask, your settings, get the Sleepyhead software if your machine can use can use it.

Then you can collect the data and post screen shots to the forum for suggestions to make your treatment the best you can. Your problems now suggest you treatment is still out of whack. This take work, there is no magic pill, but things can be made better. Welcome! Jim

cxs - Sorry to hear about your struggles. The good news is that the forum can help you if you provide the necessary info. Pugsy and Goofproof outlined what is needed. Some of the information may look overwhelming but in most cases a basic understanding is all that is necessary to succeed.

Need to know machine model, not just brand name, plus mask type and pressure settings... and do you use the ramp?

After you were diagnosed with sleep apnea were you taken off the oxygen? Just wondering since it was just at night if the problem was the sleep apnea making your oxygen drop, and if treating that resolved your low oxygen at night. Hopefully after providing some more info you can get more targeted responses to make sure your treatment is doing all it can for you. Do keep in mind people commenting in these threads might miss or forget your mention of COPD and give you general advice not applicable for one with COPD. Run any advice through that filter. Good luck with getting to feeling better.

Oh Boy. I am also new to this and having a whole host of problems. I am trying to stick with it and so should you. COPD is a different entity. Check or see your doc or therapist as often as you can.