surprised at self treating

The vast majority of people here HAVE been diagnosed by a doctor and a sleep test of some kind.

The real reason we are here is to IMPROVE our treatment. SOmething you don't know yet is that most sleep doctors only know how to diagnose sleep apnea. They know what it is, and that cpap is the treatment. They don't actually know HOW to sleep with a cpap machine. Often, they don't know how to look at the data and determine what can be improved.

So, we get a lot of people who come here who have been set up to FAIL - BY THE DOCTOR.

Machine with NO data. How can a doctor possibly know if you are being treated well if they can't see how many events you are experiencing, what type they are, when they are, etc.? Without data being looked at, many people continue (or give up) without knowing that the settings were not correct for them.

Many doctors believe that a wide open auto machine will magically choose the right settings. That is NOT how it works. This actually sets people up to fail. The starting pressure is uncomfortable and useless, and people tend to give up within a week or two.

Ramp. Doctors and DMEs think this is some awesome feature to help new people, but it hurts more people than it helps. starting ata pressure of 4 or 5 is way too low for most people, and causes them to feel like they are suffocating. They rip the mask off and never put it back on.

DMEs love to lie to their customers. They sell the cheapest, worst machines, set them up to fail, and try to sell the highest profit masks. If you need something even slightly less common, they will lie to you. I was told by my DME that I could not get a smaller size headgear. It did not exist. I sent them the link to Resmeds website showing it. They refused to order it. I fired them.

Basically, if you trust your doctors and DMEs to take care of this treatment FOR you, you are likely doomed to fail. Very few will have a good combo of doctor and DME.

My mom was on cpap for 20 years before I was diagnosed. She never felt any improvement. After I had my followup, I let her use my full data machine for half a night. Her ahi was 3.4. Good, right? I then looked at the data. She had a cluster of 8 events in less than half an hour. All over 30 seconds each. One over a minute long. No wonder she felt like crap. And that was at her PRESCRIBED pressure. We did another partial night starting at her pressure and going up only 3. I printed both reports and my mom switched to my doctor (who actually has sleep apnea himself and prescribes full data machines). He prescribed a new machine for her with a range a little bit stronger than my test. My mom is a LOT happier now. Had she stuck with her old doctor and her old machine settings, she would still be miserable.

This forum is where people can learn to improve their comfort using cpap as well as make it more therapeutic. It is a much better investment that spending hundreds of dollars trying out different doctors who mostly don't know what to do with data from a cpap machine.


As for the insurance comment, this is the real world. I HAVE insurance. My deductible is low compared to many others, and I STILL can't afford to use my insurance for supplies most years. I got my sleep test in 2012, and I had to pay over $900 out of pocket because I had not met my deductible yet. My cpap cost me over $400 after insurance. I did not make my deductible in 2014, 2015, or 2015. So, stopped going to doctors. At $240 per visit, I couldn't afford it without being sick. It was cheaper to wait until I was sick and only go for that. I actually went off my blood pressure medications for 3 years because I could not afford the frequent doctor visits.

This year, I had e-coli in April. That meant an ER visit. Two weeks later, I had the headache from hell which lasted for 2 weeks (turned out I was still sick and dehydrated from the e-coli). That meant another ER visit then a couple doctor visits. I knew that I would be meeting my deductible, so I am back to regular office visits to get my blood pressure back under control. NOw that I am past my deductible, a doctor visit costs me about $30. But I still over $1500 from the ER visits, and that is AFTER insurance. This is a big deal for me. I don't have a high paying job. I also have other bills such as 3 big car repairs this year (fuel line damaged, windshield wiper motor, and brakes totally melted - those 3 repairs totalled over $1000). I cannot afford a new vehicle.

You think insurance is cheap? Four years ago, my job was in contract negotiations as my employer was trying to drop our insurance coverage. I went online to find out how much the state option would be. The cheapest plan was 5 times my current premiums. The deductible was 8 times my current deductible. And that was AFTER subsidies. No way I could afford that plan.

zoocrewphoto - that is beautifully put!!!

zoocrew...+1

We cannot expect doctors to know everything.
There are generalists and there are specialists.
Either one requires almost more study than is humanly possible.
The more specialized, the less one is likely to know about outside matters.
A pulmonologist studies the lungs and breathing disorders.
It is rare for one to also be an expert on the machines used for therapy.
Even the people who sell those machines are encouraged to only learn enough to make a sale.
Too much "side talk" cuts into profit--retail workers get disciplined for this---I know/been there.
It is up to the patient or their caregiver to fill in the gaps.
Fail that--the consequences can be anywhere from unpleasant to dire.

I'll chime in here and say that self-educating is so important in the treatment of sleep apnea! In my case, I had a sleep study 6 years ago which showed I had severe sleep apnea--I had 62 apneas in an hour. I was prescribed a full face mask that I hated and could never get used to. I felt HORRIBLE with the mask and the CPAP and had the mask adjusted something like 6 times. The location and hours of the DME were really inconvenient and I had to take time off work each time to get there on time to get my mask adjusted. They never offered another mask (and embarrassingly enough, I never thought to ask) and I had no idea that a pressure change or a mask change would help me--because they were the EXPERTS, right? I tried and tried for 6 months with the machine and mask and never, ever felt better and so I just gave UP.

Flash forward six years and my husband can't sleep in the same room with me because I am snoring so loudly that I am peeling paint off the wall. Besides that, he is freaked out because I stop breathing. Often. For a long time. He is terrified that I am going to die in my sleep. I have no energy, am starting to get really depressed and catch myself nodding off at work. I also take a trip with my sisters to go visit my Dad and I have to sleep on the couch in the front room. I wake up find two sisters and a Dad also now VERY freaked out because of my breathing--or lack thereof. I finally give in and go to the doctor and this time, I get a home sleep study.

No Surprise, I still have severe sleep apnea. I get a fancy Dreamstation Auto-flex CPAP machine (brand new) but I get stuck, again, with a full face mask, because of the symptoms I described of gasping for air. I am termed a "mouth breather" because of that and God forbid I have anything less than a mask that gives me claustrophobia and hurts to wear. I was given less than one minute worth of instructions on how to use and clean the machine and probably one minute to get used to the mask.

The cycle of not sleeping and sobbing because of the mask and the crappy way I feel starts alllllllll over again.......until......I see a video on youtube by "TheLankylefty27" who is a sleep tech who does all these funny videos on all-things CPAP. He reviews masks and machines, sleep aides, you name it and he has probably made a video on it. I was fascinated with his video on "Full Face CPAP Mask: Do You Really Need One?" https://www.youtube.com/watch?v=hK2uE07bvKc . It was a complete eye-opener for me! I decided that I would try a nasal mask and back to the DME I went and got my Nuance nasal pillow mask. What a difference!

As far as managing my sleep therapy, I found this forum and thank God that I did! No one out there is going to be as invested in my sleep health than ME. I have to be a self-advocate. I have to educate myself. I don't have the money or the time to keep running back to the DME or my doctor trying to solve my sleep issues and asking questions or having my stats interpreted for adjustments.

Through this forum I have found support, education, understanding and real help. I have learned how to adjust my own therapy settings and have seen vast improvement in my numbers and have felt the positive results. I can now say that CPAP therapy has made a drastic improvement in my life and I can now sleep comfortably through the night and am feeling all the positive effects of a good night's sleep. All because I decided to be a self-advocate and found the education and direction from Jason (TheLankyLefty27") and the knowledgeable people on this forum.

Thank you to all who made it this far in reading my novel. Soon to be a movie.

Office hours:
DME/Dr.---M-F , 9-5. (if that)
Cpaptalk--24/7

LSAT wrote:zoocrew...+1

Best answer of the year. Jim

My efforts to gain knowledge about my treatment was out of desperation. During my first several months of treatment (with a brick) I was back and forth to the sleep doctor trying to figure out why I was getting worse instead of better. In those few months I lost my career and my independence and became nearly nonfunctional. Oh, the doc tried increasing my pressure a notch, but he was missing the main issue. The one thing that nearly killed me was improper use of the ramp feature - but I was using it exactly as I was instructed by the doctor and the DME. Their knowledge about ramp was limited to "it helps you adjust to the pressure". They told me any time I woke up to just hit the ramp button and start over. Horrible advice! They knew I had PLMD and wake up literally hundreds of times a night. Why didn't they realize they were condemning me to never getting to a therapeutic pressure? They knew I would fall asleep even before my head hit the pillow, yet they still kept me on a long ramp (30 or 45 minutes - memory is foggy). They knew when I dozed off immediately I would almost as quickly jolt back awake with a sense of suffocation, yet they kept my ramp starting at a pressure of 4. I sat in his office and broke down in tears begging him to help me, and he just looked nervous and said things should get better. No they wouldn't. Not with me spending my nights at a pressure that rarely made it past 4. It took one visit in the once vibrant chat community here for someone to explain this to me and tell me to decrease my ramp time and increase my ramp starting pressure. Like magic my treatment began to turn around. How about that? My life was saved in a chat room, while under the un-care of an esteemed sleep doctor. I am not anti doctor - got several I respect and count on their expertise. There are medical things I am nearly clueless about, but I can proudly say I am well informed on the subjects of OSA and PLMD. And I have learned first hand that not all doctors are equal in their abilities, or in their willingness to learn.

NOTE: Some of the newer machines have upgraded the ramp feature to respond to impending events. Great innovation in my opinion. Still wish the ramp would be used in a more individualized manner and in at least some cases prevent the need to interrupt ramp and increase pressure, as that in itself could be disruptive to sleep. A person using one of the newer machines whose ramp is frequently interrupted in my opinion needs their ramp settings reassessed.

Pugsy got it backwards.
Many of us have plenty of MONTH leftover at the end of the MONEY.

I have been lucky enough to be on a Medicare Advantage plan.
I got my original diagnosis from a GP after a simple overnight Oximiter test. We followed up with a split night study.
So I did get a proper diagnoses of AHI=84.
I found this forum between the two tests. I gained wonderful knowledge about what to expect in the overnight study and knew exactly which machine I wanted when I literally picked up my sleep study results in the parking lot of the lab without even getting out of my vehicle.
I drove from Las Vegas to San Diego. The next day I went to see a friend who was an MD and a PAPer. He looked at my study called the DME that provided his CPAP needs and I went over and picked up my S9 Autoset and a mask.
I got my software and guidance on the forums.
Three years later I noticed my AHI climbing and lots of centralized. I searched out a good sleep specialist who ordered another titration study for ASV treatment and a new machine. I had somehow convinced him to see me even though he was out of network. The next year he refused to see me again.
I went to a different sleep specialist who's advice turned out to be the opposite of what I needed.
The last specialist I went to I never got past the PA. He looked at my reports, asked if I had any questions, and said keep doing what you are doing.
Pugsy has been among the most helpful "sleep specialists" I have dealt with. Several others here seem to have more technical knowledge of sleep apnea than all the MDs I have seen, combined.

bwexler wrote:
Pugsy has been among the most helpful "sleep specialists" I have dealt with. Several others here seem to have more technical knowledge of sleep apnea than all the MDs I have seen, combined.

+1