Newly diagnosed and feeling abandoned

[inafog]

I am a 60-year old female just diagnosed with OSA. My sleep study revealed that I have about 76 apneas per hour, which I have learned on my own puts me in the "severe" category. I was referred for the sleep study, which my insurance carrier made me do at home, by my primary physician after seeking a physical for chronic fatigue, drowsiness at work and while driving, memory and cognitive skills impairment, mental confusion. Now that I have been diagnosed I can look back and see that these symptoms have been there for a long time, probably ten years or more, but have recently become much worse. I am using the new Res-Med for women with the nasal pillows and the airflow seems to be waking me up almost every night when the reading gets to a point of 10.5 or 11. I am also noticing numbness in my arms from time to time. Since starting CPAP therapy, my abdomen feels like it has been punched all night, but I guess that's because I'm breathing in a way I haven't for a decade or more. Neither my referring physician nor the sleep center has explained the sleep numbers to me and counseled me about their bearing on my health. I haven't even seen anyone at the sleep center except an administrative person. Since I am borderline diabetic, overweight, a senior, arthritic and now this, I am really concerned that no one seems to be taking this seriously but me and I'm scared.

[BlackSpinner]

We take this seriously.

To help you better we need the exact name of your machine (what it says above the power button) and the name of your mask.

If it keeps data we can show you how to install the software which will show in detail what is happening at night.

The numbness - it could be due to the mask straps pressing on your neck or because you are sleeping more deeply and moving less - many people find they need a mattress topper and new pillows because of this.

The abdomen problems can be due to swallowing air.

[palerider]

To help you better we need the exact name of your machine (what it says above the power button) and the name of your mask.

if she's got (I'm guessing) the new airsense for her, the name is on the lower right corner.

we'll need to keep this in mind when asking people to identify their machines in the future. (I think the power button is on top on those

asking for the REF number on the back is always a sure fire way to get the right info.

[RogerSC]

One way to go about this is to ask your primary physician for a referral to a sleep doctor that works with your insurance. This may or may not be at the "sleep center" that you've mentioned. You should have had or be having a followup visit with a sleep doctor to talk about and address your concerns after using the cpap for a while. I had a different track, where I was referred by my primary care physician to a sleep doctor, and scheduled for a sleep study at the lab here. After the sleep study, I talked with the sleep doctor about the results of the sleep study, and what my alternative were. Got a cpap, and a lesson with the DME on using it. And had a followup visit after 30 days. I consider my sleep doctor as my primary resource for talking things over, he's a great guy.

You need to have a good sleep doctor to talk about these ground-zero problems with. Please arrange that *smile*. There are various approaches to the problems that you're having that have worked for people here, but getting some medical advice lined up, and having that resource available to you when you need it is very important (in my opinion). Once you're on a solid footing there, things should be easier. There are people here that have never seen a sleep doctor, and have worked through all their problems, but personally, from what I'm reading, I think that you should have a sleep doctor to talk with. For example, the stomach pains could be from swallowing air, or from other possible causes.

Good to have these things checked out, do take care of yourself.

[inafog]

My experience so far has been pretty negative. Referred by primary for sleep study. Two weeks later a place in CA called me and said I had been denied for in-center study so had to do at home. Sent the machine to the wrong address. Finally got it and did the test at home. Took me almost 3 weeks to get the results back, calling daily between CA company, sleep center and primary doc. Sleep center asked to do second study in facility because # so high to titrate cpap. Denied and given auto for 30-day trial. After that, now given air sense for her. At no point has my primary physician even reached out to me about the study results and no one from sleep center/sleep doctor whatever you want to call it has explained much of anything to me. I'm concerned that the numbness in my arm could be related to my heart so made an appointment with referring primary tomorrow to get some answers.

[BlackSpinner]

You are not alone with your negative experience. This is about par for the course in sleep medicine. And they wonder why 50% give up.

However with a decent machine, with the Sleepyhead software you can totally conquer this with our help. Once you treatment is dialled in and your body/mind adjusts its self to the therapy the results can be quite amazing. It can take a few weeks to a few months depending on your body.

[WinterLily]

I am using the new Res-Med for women with the nasal pillows and the airflow seems to be waking me up almost every night

Switching from nasal pillows to a nasal mask solved this problem for me. I think the pillows create more of a pressure sensation in the nose. I guess a lot of people don't notice it, but I'm feeling less airflow and the sinuses don't feel like they're being "inflated" with the new mask.

Maybe you could talk to the doctor about the Wisp, Mirage FX, Swift FX Nano, or another not-too-bulky mask of that type?

[RogerSC]

My experience so far has been pretty negative. Referred by primary for sleep study. Two weeks later a place in CA called me and said I had been denied for in-center study so had to do at home. Sent the machine to the wrong address. Finally got it and did the test at home. Took me almost 3 weeks to get the results back, calling daily between CA company, sleep center and primary doc. Sleep center asked to do second study in facility because # so high to titrate cpap. Denied and given auto for 30-day trial. After that, now given air sense for her. At no point has my primary physician even reached out to me about the study results and no one from sleep center/sleep doctor whatever you want to call it has explained much of anything to me. I'm concerned that the numbness in my arm could be related to my heart so made an appointment with referring primary tomorrow to get some answers.

Good to hear that you're being assertive about seeing a doctor about the problems that you've described. Hopefully, one of the answers you'll get tomorrow is the name of a good sleep doctor to talk with about sleep issues. Don't forget to ask for that *smile*!

[archangle]

Welcome, sorry you had to join us.

Yep, you've been somewhat abandoned by the medical mafia. Many people here fit that category.

Unfortunately, a lot of us have to figure out CPAP on our own to get it right. Luckily, that's not as hard as it used to be thanks to the internet and a few good people helping others out. There's also software that can help you out a lot.

Keep after it. Sleep apnea that bad is killing you slowly.

[Ogeo]

My experience so far has been pretty negative. Referred by primary for sleep study. Two weeks later a place in CA called me and said I had been denied for in-center study so had to do at home. Sent the machine to the wrong address. Finally got it and did the test at home. Took me almost 3 weeks to get the results back, calling daily between CA company, sleep center and primary doc. Sleep center asked to do second study in facility because # so high to titrate cpap. Denied and given auto for 30-day trial. After that, now given air sense for her. At no point has my primary physician even reached out to me about the study results and no one from sleep center/sleep doctor whatever you want to call it has explained much of anything to me. I'm concerned that the numbness in my arm could be related to my heart so made an appointment with referring primary tomorrow to get some answers.

Definitely sounds like the majority of us. I also was referred by my primary and never even met the sleep doctor until I made an appointment to go see him. They didn't call me - I called them. When I went back to my primary doctor for my wellness visit, he actually told me that he doesn't know anything about my machine (ASV).

You are in the right place to get help here on the forums. There is a lot of info to take in when you are new. I am still learning and figure I will always be learning something new. Do call the sleep doctor that read the study and ask for a copy of your sleep study results and also request a copy of your prescription. AND post your questions here.

[inafog]

Thought I would update those of you kind enough to respond to my cry for help.

Saw my referring doc today (actually PA for practice) and found out she had never seen my study results (went to primary doc in practice, who never contacted me for follow up despite the severity of my numbers). She was mortified and said from here on she would advocate more for me. Is setting me up with appointment with neurologist who read my study so he can know my full history and advise us both where to go from here in addition to cpap therapy (possible ekg, etc.), plus counsel me in adjusting my machine to settings and humidity/air warmth that won't keep waking me up! I am pretty proud that I stood up and pushed back to get the help I need, and I appreciate so much the leg up this forum has given me.

[Tatooed Lady]

Good for you!!!