Misdiagnosis by VA ABQ & related remedy using biPAP

The following is to be considered personal perspective and opinion, and not professional witness nor advice

I have acute sleep apnea, where I stop breathing about 140 times an hour. I gasp, but it does not interfere with my sleep cycle. When I go to bed, it usually takes less than 2 minutes for me to drop off to sleep, unless I'm fussing with the mask.

I was first identified with sleep apnea in the Navy around 1986 when sailors that slept near me would tell me I snore loudly, but what wakes them up is when I stop breathing for up to a minute during the night.

It is getting worse as I get older.

I originally had a sleep study done by a private medical group around 2003 and they issued me a CPAP. Every couple of weeks I would wake up and it would feel like a check valve closed in my throat and I could not get another breath, feeling like it was going to be my last breath. After a 30 to 60 seconds I could take shallow breaths and after 10 minutes I could go back to sleep. I felt exhausted.

I contacted the sleep study group, and they said to continue to practice using the CPAP machine and it would get better. After repeats of not being able to breath, where not using the CPAP this never occurred, I stopped using the CPAP. The cause of stopping me from breathing was not acceptable.

Years pass and my snoring intensely bothered my wife.

As a Veteran, this time I went to the VA hospital in Albuquerque, NM.

Side note about the corruption at the Albuquerque VA Hospital:

Let me say up front the VA staff up front in-general are good-hearted, helpful, and pleasant. However, I noticed that there is Empire Building (corruption) where admin surround themselves with incompetent Yes-men in an attempt to do what they want instead of following government directives. This means competent doctors and staff have to work twice as hard to care for patients, and the Yes-Men do nothing and harm patients due to incompetence. This destroys the passion of competent staff and since I've been there I have seen competent staff seek other employment. The FBI should do a long-term study of the VA Admin because I am told admin may be getting kickbacks from medication vendors where certain physicians over-prescribe unneeded expensive medications.

Back to CPAP

I am issued another CPAP by the VA, based on my previous external sleep study, and my old machine is mothballed because they could not get past the password the previous sleep study clinic had implemented. Note to others: make sure you are provided the password for your machine, or do NOT accept delivery from a provider. Get the machine from someone else where you are provided the password. Because if you move, or if you decide to change providers, no one will be able to make adjustments to your CPAP or check it out if something is not right.

The same thing happened. After a couple of weeks I had an event while I slept that prevented me from breathing. I stopped using the machine and lost hope.

Over 10 years go by and I'm backpacking with a friend in 2015 who happens to be a physician. We had to pitch our tents in different areas because of my snoring. He educated me about the long term effects on my heart from sleep apnea; and as importantly he told me about biPAP if CPAP doesn't work.

I then asked my PCP to schedule me for a sleep study at the VA and requested evaluation to receive a biPAP.

I met with a person (do not know if doctor or other kind of specialist) and expressed my desire to try a biPAP. We discussed my symptoms for about 20 minutes and then I was scheduled for a sleep study.

I arrived and the sleep study technician was arrogant (loathing of others; possibly loathing of self). But I remained pleasant and attempted to make her job easier wherever I could assist. I was plugged in to a dozen electrodes and under camera surveillance. I went to sleep quickly as usual. A few hours into sleep, I woke up having had the CPAP stop me from breathing.

The technician came in with a bad attitude and said nothing was wrong, that I was breathing normally. That I was "afraid of the CPAP machine". It's all on video. I tried to explain the symptoms and she was not at all helpful. She then said, "Either we continue the sleep study, or it's time for you to go". I thought about it for a few seconds. Stupidity is to do the same, and expect a different outcome. She claimed that it was all in my head, that I had a psych problem that needed to be dealt with. So I asked them not to erase any of the data, since it is the only evidence to help me in dealing with my mental disorder. So I got dressed and as I was leaving she and the doctor were standing there with smirks.

Afterthought: Why was I not being tested with a biPAP?

They said they would schedule a follow up appointment, and said not to worry that they would help me work it out. But their body language was in conflict with what the technician was saying. I never received a notification of appointment.

Six weeks later, through my own influence, I had an appointment scheduled. I missed it because of the short notice and my busy schedule; my fault. So I set up another appointment. When I arrived they didn't know why I was there. I went to prosthetic area, i.e. the CPAP/biPAP equipment area, and they issued me a BiPAP; something was in the system. No psych eval, contradicting what the technician said in the presence of the sleep study physician present. So if I have a mental disorder, why was I issued a BiPAP and no human to deal with my claimed fear of CPAP?

The BiPaP has worked GREAT !!! I haven't had a single breathing obstruction in months.

So here is what I think was happening.

My lung muscles have been programmed mentally to operate within a certain range of motion. When I sleep I breath shallowly. When I have an apnea event, my lungs can easily overcome the shallow breath within the normal range of lung muscle movement. However, on CPAP the additional pressure on the obstruction forces my lung muscles to have to work outside their normal range of motion. This translates to muscle strain with low fresh air intake. CO2 starts building up in my body. After repeated events my lung muscles have a lack of oxygen to operate the muscles; so I cannot move my lungs to get another breath. I wake up unable to get another breath. My heart continues beating and after 30 seconds or so there is sufficient oxygen in my lung muscles to take shallow breaths. I start breathing again.

How BiPaP is different

The BiPaP machine detects when you are inhaling and provides additional pressure to help lung muscles move more easily. The biPAP then detects exhaling and lowers to equivalent CPAP pressure to keep the airway open. Over time my lung muscles are becoming accustomed to working in this new broader range of movement.

The only problem I have now is when I have some congestion for any reason. The congestion makes using the machine very difficult because of the additional obstruction of congestion. I wake up very often having difficulty breathing. I don't want the side effects of taking histamines for long periods. So I'm still trying to figure that out.

I still breath shallowly, even during the daytime. I find myself taking sudden deep breaths as a natural part of every day. This I think is pretty much the same as before, but am not sure. I think I am just more aware of it now.

If you have severe problems using CPAP, consider what it might be like to use biPAP. For me it has been a game changer. But I'm sure it is not suited for everyone.

If biPAP is not set correctly, it can cause other kinds of problems. From my readings, as much as practical use the minimum settings that provide needed results, but try to have settings that force your lungs to work as much as practical for themselves.

Other suggestions:
Clean & Refill humidifier every night
Use dish soap once a week and gently clean out mask
Brush your teeth every day and use mouthwash every evening before bed, it makes a difference
Blow your nose just before bed
For some reason, my machine works better when it is in airplane mode
*** the pressure seems to reduce on its own when not in airplane mode & I wake up gasping

If you have acid reflux, do not eat within 3 hours of going to sleep, sleep with your body propped up on pillows, this helps prevent stomach contents from seeping up into your airway. If stomach particles get into your lungs while you are sleeping, it will likely cause pneumonia (inflammation of the lungs). If you have a small persistent cough for more than 3 weeks, this may have happened and you will need to see your doctor to take steroids to clear it up. Pneumonia for other reasons generally clears up on its own, but breathing in food particles creates hiding places for bacteria to provide sustainable incubation.

I think you will find many of us are using bilevel (BiPAP) devices. It would help if you would fill in your profile to identify the specific machine you are using, mask and other information. Your machine is most likely either a Philips Respironics or Resmed. You can check the model number (REF) on the bottom of the blower, or read the words on top like Auto BiPAP, BiPAP Pro, Aircurve 10 S, Aircurve 10 VAuto etc.

If it is one of those machines, it generates efficacy data that can help you to understand how it is working, and if there are any improvements you can make to optimize it.

Glad you finally found something that works for you.

When setting up my profile, I looked under ResMed but did not see my machine, so left it blank. I later found it listed under AirCurve.

I was told the ONLY place I could view efficacy data was on the myAir website. Which just provides scores for a few different things, but does NOT provide the actual data captured during use.

My device uses a cellphone connection to transmit data. The SD card is in a special format that supposedly is inconsistent with computer formats.

Do you know if there is a way to capture and view the data collected by the ResMed AirCurve machine?

First, thankfully, you are getting good treatment now with your bipap.

Second, I would report your concerns to the State. Give them examples. While the VA is a federal entity, they must still follow the rules of the state and poor patient care is an issue that the state CAN address. Our VA was horsepucky back in the 90s and is now a well run organization mostly due to state intervention.

Some of your post makes sense, some dont. I have used the V. A., not for XPAP, sometimes they fail sometimes they work, it's the worst possible solution, bureaucrats in charge of medical people, ran by big bussiness.

First your orgional CPAP, there are NO PASSWORDS, you must use secret keystrokes to enable the menu, very easy. You need to find the correct machine you have been given, people can point you to the correct Manuel to operate your machine.

As far as the magic data, it's just data, it's made to be read by a computer program, like all other computer data. Again find out the machine you are using, someone here can help.

Odd's are your orgional CPAP wasn't set up for your needs, that can be fixed. With your new BPAP, you got lucky, someone guessed the setting that worked for you, even a blind squirrel finds a nut once in awhile. BPAPS, have more things to fool with in setting them up, making them more difficult to dial in, thank that blind squirrel.

Empty the water from the heated humidifier, turn BiPAP over to read what make and model it truly is enter it in your profile so the people can help you. You need the provider manual for your BiPAP and the program needed to read your data.

Airplane mode doesn't affect treatment,PERIOD. It turns off the ability to call home, stopping RFI signals.

Welcome to the group, Keep PAPING! Jim

The data for your machine is stored on an SD card in the machine. You can put the card in your computer and look at the data using Sleepyhead software. The software is free and has been developed by a member of the forum. If you don't want to move the card from your machine to the computer and back to the machine regularly, you can install a Flashair card in the machine and then transfer the data to your computer through your computer if you have a router connected to it. I use this method to track my therapy. I am retired military and have never used VA other than one knee surgery and hearing aids several years ago. I'm old enough I use Medicare and Tricare for Life.

vapatient wrote: Over time my lung muscles are becoming accustomed to working in this new broader range of movement.

that's an interesting theory, but I believe it's wrong. however, you can can prove, or disprove that theory by pulling the data from your current bilevel machine (bipap is a trademark from a different company for their bilevel machines) and from your previous machine, and comparing that data in sleepyhead.

also, no reasonably modern machines even have the capability to have passwords on them, just hidden menus accessed by a combination of button/knob presses. (nothing made in the last 10 years, if not even older.

Goofproof wrote: First your orgional CPAP, there are NO PASSWORDS, you must use secret keystrokes to enable the menu, very easy.

Oh THAT'S what he was talking about - the clinician's menu to adjust settings. I couldn't imagine a reason to password protect your machine from therapy.

Thanks.

You can learn about the free computer software to read your SD card here. https://sleep.tnet.com/resources/sleepyhead

---Someone actually TOLD you there was a password.
OMG, that would be so funny if it wasn't so damned tragic.

chunkyfrog wrote:---Someone actually TOLD you there was a password.
OMG, that would be so funny if it wasn't so damned tragic.

I didn't know if maybe the ancient ones had a password... and since the OP didn't say how old his ancient stuff was.

Apparently the Somnetics Transcend II CPAP has a password to get into the clinical setup. viewtopic/t77261/Clinician-manual-andor ... nd-II.html