Using Cpap for 8 months and exhausted

[CarEY]

I just don't want the doctor to up the air pressure. Its at a 4 right now with a ramp up to 6. I can barely stand it. My nose does not agree either. I wanted to continue on with the multiple sleep latency test but the doctor kept refusing and wouldn't let me. She is not the nicest of doctors. My insurance refused to pay for anything (gigantic deductible). I have to start all over with that anyways because I am getting a new job. Even my medical supplier said if I want a nicer mask, I have to pay $75. I have had sleep paralysis since I was 16 years old. When I told the doctor, she just brushed off the nightmares and sleep paralysis like they were nothing and told me to take naps throughout the day. I told her I couldn't if I could help it because of the sleep paralysis. She again ignored the comment. I guess I have to find a doctor who will actually listen to me. This is so costly and irritating. The moods from lack of sleep don't help either. :/

[sw33ttsunade]

A General Practitioner will have very little if any experience with narcolepsy, and if that is what it is, you need one that can treat you. It will be treated in ways separate but somewhat complimentary to OSA. From what I have read, there is no cure, but you can take meds to help stay awake, and you can discipline yourself through light sources (bright sunlight during waking hours- especially if you get tired, go outside for a few minutes, and stay away from fluorescent bulbs if possible) and a strict, STRICT, time to go to bed and wake up. Even if you don't fall asleep, go to bed, turn off the lights, and even if you don't want to get up, do it. You will have to make your body exhausted and retrain itself to the cycle. Also, if you can do it, it is good to take short naps during the day, even 10-20 minutes is great. It is protected under Federal Law. This is all based on my reading, so take it with a grain of salt, but everything points to make life adjustments to cope because it can't be cured.

[CarEY]

This was a neurologist telling me all of this. I can't do an MRI because I have pins and plates in my face from a previous surgery. If I can help it, I refuse to take naps. Less than 10 minutes into a nap and I will have sleep paralysis. Happens every time. Its not the sleep paralysis that bothers me. It just makes me even more exhausted and I wake up from the nap feeling worse and more groggy. The moods come back and I feel worse off than when I started.

The rest of your suggestions (minus the getting up right away--> I'm working on it) I am already doing.

[quiescence at last]

feeling for you.  also, I hope you are not offering rides to work, doing driving thing when you may just drift off and have a real problem all the while paralyzed.

I hope I will die peacefully in my sleep like my uncle, and not screaming in fright like the passengers in his car! - adapted from quote of Will Rogers

QAL

[Sleeprider]

CarEY, you mentioned that you might have had central apnea in a previous sleep study. That combined with your very low pressure and lack of satisfying sleep makes me think centrals may still be a problem. If you are using an Airsense 10 CPAP model, then you won't have data to look at, but if it is the Autoset or Elite, you should use the software to see what is going on. I suspect you have the "brick", which is really too bad with all the problems you have.

My experience with nasal pillows is that users require a LARGER size than they think, and that sores come from too small nasal pillows that move around rather than be supported on the outside of the nares.

I feel for your problems and discomfort, but if your machine does not provide data, you need to get one that does, or consider another sleep study to see what is going on. I highly recommend talking to your doctor about an auto CPAP instead of the fixed machine as it can solve problems and detect them and report them.

[CarEY]

The only data I can get from it is the kind that goes to the MyAir app. I have attached a picture of it. The machine has an SD card but there is no SD slot in my computer so I will need a different way to add it on here. 

I thought it was strange that the central sleep apnea was not addressed. As I stated before, the doctor did not call to explain. I was sent 2 packets of paper about 4 months after the sleep study with the mask.

 It states obstructive events, hypopneas and at least 1 central apnea with an AHI of 7.5 and RDI of 7.6.--> that was the baseline study before using the mask. My oxygen levels got down to the 70s without the mask. 


For the sleep study with the mask --> total arousal index was 6.3/hr (still high to me), Oxygen desaturation went down to 85%, and mentioned the PVCs I mention below as an issue (which it most definitely is not) and that there were no significant PLMs.


I was told by a pediatrician at age 11 that I had premature ventricular contractions (PVCs). I did let the doctor and sleep specialists know about this before the first study was done. They got very concerned and said one day I was going to die and never wake up because my heart was going to give out. I let them know that I had a multitude of tests done, blood drawn, stress test, eeg, echocardiogram...etc and the cardiologist said it was benign and wouldn't hurt me and they went away when I exorcised...havent really bothered me since (the results were destroyed years ago when a hurricane came through and they hadn't moved the paper copies to the computer yet). They refused to take that as an answer and insisted I just wouldn't wake up one day...how very comforting.

The results clearly state: Impression: Obstructive Sleep Apnea with successful CPAP titration with resolution of most of the respiratory events.....no mention of central apneas or anything else. Most of the respiratory events?!?! If it doesn't help all of them...isnt there still a problem? Can you have a central apnea event and not have mixed or central sleep apnea?

It also said there would be a follow up in the sleep clinic for efficacy of CPAP after one month...never received a call or anything to make an appointment. 

When I called her about the results, she said I am not taking a full breath and having hypopneas (never once mentioned obstructive events...just hypopneas then tried to stumble on how to explain it) and that she was just going to have someone stop by with the CPAP machine...end of story. No further explanation. 

When I saw the medical supplier, he had me look up and then he examined the size of my nostrils. He said I was an extra small. 

I told him that sometimes the mask felt blocked and I couldn't feel the air in my nose (I have bad allergies). He said "Do you have a deviated septum"? I said...I have no idea. He then asked if I wanted a full face mask. I said absolutely not! I am very claustrophobic and would probably panic with one of those on.

[Sleeprider]

A USB card reader costs less than $15 on Amazon or any electronics store. So you can read the SD card. The question is, does your machine say CPAP, Elite or Autoset under the Airsense 10 on the right-front of the machine?

[chill]

One small note.  My sleep docs asked me about naps and I said the same thing, it "makes me even more exhausted and I wake up from the nap feeling worse and more groggy".  He said that was a clear sign of sleep deprivation.

[CarEY]

A USB card reader costs less than $15 on Amazon or any electronics store.  So you can read the SD card.  The question is, does your machine say CPAP, Elite or Autoset under the Airsense 10  on the right-front of the machine?

It says Elite

---

One small note.  My sleep docs asked me about naps and I said the same thing, it "makes me even more exhausted and I wake up from the nap feeling worse and more groggy".  He said that was a clear sign of sleep deprivation.

Did he suggest a solution or mention sleep paralysis during naps? That's the only reason I feel worse is because of the sleep paralysis.

[OpalRose]

Elite is data capable. Purchase a card reader for your computer, this way we can see your data.