Frustrated - Lost

jules wrote:If you have the Pro 2 (as you have linked), you have a data capable machine. However, you need to get the software. Once you have the software in hand, you can determine how well the machine is treating you and go from there.

Just a note.. you said snoring was the problem. My Bipap ( listed below) has done wonders fro me. I'm never tired behind the wheel or at work anymore. I have the software and use it. According to the software I have less than one apnea per hour and not much more hypopneas. However I have hundreds if not thousands of snores each night

My guess is the machine means there is a vibration in the airflow, and not the earth shattering tremblors that has the wife rooting for the increase in apnea duration. But.. note that curing apnea is not the same as curing snoring.

Thanks for everyone's concern. I do plan on visiting the doctor at some point but first I must attempt to make this work myself with the tools I was given. I'd be embarrassed to go back to the doctor after three years only to say I haven't even tried to give this a fair chance. My heart issues are weird; I do believe it's apnea related in addition to other factors, such as the fact that I strain my system excessively by skipping breakfast every day, smoking (albeit only a few a day) and not drinking enough water. I've had these weird "pumps" happen since I was a teenager though, so I can't say it's entirely apnea related. I've brought it up to MDs that have referred me to cardiologists for EKGs but nothing comes up since it happens so sparingly; I often go weeks without a single issue, sometimes I get a few a day.

In any case, I am aware that at some point I'll have to involve a professional in my therapy again but I find that any advice I can get from anyone in my same situation is extremely valuable in knowing more about the condition, the equipment and how to deal with it all. I Really appreciate everyone's input and help. Since I made this thread, I've had several people approach me for advice and that is awesome and am very grateful for it.

georgepds wrote:

jules wrote:If you have the Pro 2 (as you have linked), you have a data capable machine. However, you need to get the software. Once you have the software in hand, you can determine how well the machine is treating you and go from there.

Just a note.. you said snoring was the problem. My Bipap ( listed below) has done wonders fro me. I'm never tired behind the wheel or at work anymore. I have the software and use it. According to the software I have less than one apnea per hour and not much more hypopneas. However I have hundreds if not thousands of snores each night

My guess is the machine means there is a vibration in the airflow, and not the earth shattering tremblors that has the wife rooting for the increase in apnea duration. But.. note that curing apnea is not the same as curing snoring.

I figured that was the case. I still remember discussing my results with the Doctor after the sleep study. He mentioned that I had several episodes during the night but that my sleep efficiency was in the 80%s (if I recall correctly. I'll probably order copies of my medical records soon just to have them on file and refer to them). So while I may not have severe sleep apnea, it is still bad that I feel constantly tired, not to mention that the snoring is really tearing my marriage apart. When I wore the machine during the first few weeks after I first had it, my wife was glad to see that it stopped the snoring... We'll see.

cpap joe wrote:I'm sorry, I didn't realize how anti-doctor these forums are. Sleep apnea is a medical condition and should be monitored by a doctor, not someone who thinks CPAP therapy is "only air". I know you are all very happy for how clever you are and you think you can handle this all yourself, but this is more than "just air". And by the way, he should see a cardiac specialist if he is having heart problems, not a pulmonary physician. I do agree that there are bad doctors out there, but that doesn't mean you should just give up on finding one.

My bad on the "pulmonary physician" thing. You are right. He would need a cardiac specialist. I don't know why I always get that one confused. As for sleep apnea being a medical condition that needs to be monitored by a doctor, I agree 100%. But I went through the whole sleep study and diagnosis thing. I never once talked to a sleep doc or pulmonary doc (maybe that's part of the above confusion). In fact the doc that interpreted my sleep study results was in another part of Texas that I hadn't even heard of. No one ever told me that there should be follow-ups or anything. I guess they figured if it didn't work for me I would be back. My GP knew nothing about sleep apnea and just scripted what he got from the sleep lab and sent it off to a DME. Many of the people here have had the same experience or worse.

This tells me something. The doctors don't want to monitor you or they don't know enough to monitor you. They think that it's an easy thing to strap a mask on and breath. I mean they've strapped on a mask for a minute or two to see how it feels. How hard can it be right? It's not that we're anti-doctor. We would love it if the doctors were helpful. It's that the doctors have been anti-"US". The doctors seem to not want to help. And some of us have really tried.

We are trying to help people because the doctors aren't. For some people, even if the doctors are competent the patient needs much more encouragement and hand-holding than the doctor could provide for a reasonable price. This condition, untreated, saps all the energy we have to endure and try to make it work. We help those people too.

cpap joe wrote: . . . Sleep apnea is a medical condition and should be monitored by a doctor . . .

I would hope that anyone smart enough to type his/her questions on this page is smart enough to read the words at the bottom: "The information provided on this site is not intended nor recommended as a substitute for professional medical advice."

But human beings are still allowed, in most free nations anyway, to sit around the kitchen table and talk about medical matters and what works and doesn't work for them personally.

Wulfman wrote: . . . We try to help the users with what the medical professionals fail to do . . .

Amen.

And BOY is that needed, given how much ignorance, misinformation, and disinformation is being put out there by some "professionals."

Posters here, like Den, have knowledge, experience, practical wisdom, and research abilities that few doctors would claim to have. This world needs doctors, sure. But it also needs people like the posters in this forum just as much, if not more. Fortunately, we don't have to choose. We can have both. I need my doctor, but my experience has been that there are many questions about PAP therapy that it would be very stupid of me to ask my doctor and very smart of me to ask Den.

cpap joe wrote:I'm sorry, I didn't realize how anti-doctor these forums are. Sleep apnea is a medical condition and should be monitored by a doctor, not someone who thinks CPAP therapy is "only air". I know you are all very happy for how clever you are and you think you can handle this all yourself, but this is more than "just air". And by the way, he should see a cardiac specialist if he is having heart problems, not a pulmonary physician. I do agree that there are bad doctors out there, but that doesn't mean you should just give up on finding one.

If you were to go back through about 4 years worth of threads on this forum alone, you would would see for yourself how inept so many of the medical professionals are in this area of medicine. Think about it......many/most of the people who seek help on these forums have NOT gotten the attention and help they need from their doctors. If they HAD received adequate help, they probably wouldn't be HERE.

Do you realize what the failure rate of this therapy is? Typically, according to past studies.....about 50%. That tells me that there's a problem with the education about this therapy FROM the people who should be taking care of their patients.
You can't believe how many people have never even met their sleep doctor, were wrongly diagnosed, had bad sleep studies, didn't receive a copy of their sleep study, didn't receive their prescription, had any of this explained to them.....etc., etc., etc. Far too many of the doctors and clinics saw this condition as an opportunity to make money.
What's worse.......getting their therapy figured out (with something close to the proper amount of "AIR" they need), having the WRONG amount of air prescribed by a doctor, or having their XPAP machine relegated to the closet.....or sold in a yard sale?


Den

cpap joe wrote:I'm sorry, I didn't realize how anti-doctor these forums are. Sleep apnea is a medical condition and should be monitored by a doctor, not someone who thinks CPAP therapy is "only air". I know you are all very happy for how clever you are and you think you can handle this all yourself, but this is more than "just air". And by the way, he should see a cardiac specialist if he is having heart problems, not a pulmonary physician. I do agree that there are bad doctors out there, but that doesn't mean you should just give up on finding one.

Actually Den said it better than I will, but we're not anti-doctor here. We're anti-quack. There doesn't seem to be a whole lot of knowledge in the sleep doctor arena. There are a lot of reallllly good ones out there, but there are some that think they know what they're doing, but they'll hand you a machine and take your money and don't want to talk to you again (probably because they have no answers). You're right - the condition should be monitored by a doctor, but most don't even want to see the data to assist in that monitoring. Monitoring by a doctor is a joke for the most part......a pretty much non-existent option....
This forum addresses peoples OSA issues. Masks, machines, hoses, settings - information that seems to be hidden by the so-called profesionals.
I'm positive alpha is smart enough to recognize the need for a cardiac review. I would have to say that a lot of us here are "smarter" than the doctors we've been subjected to......My neurologist told me that this forum "has a lot of very smart people. Smarter than me". She's been a sleep specialist for many many years, but recognizes that there are things to know and things to learn. We monitored my treatment together until she retired to add to and raise her family.......She also reviews this forum regularly, though does not post for professional reasons.

It really sounds like you got lost on your way to the "Doctor Freak" forum.
Here's the link -- http://www.apneasupport.org/forum-3.html
But don't expect to get a whole lot of real useful information there.......
Just my $.02.........

cheers
goose

Some advice I have taken given by another member of the forum is to just lift your mask from your face for a second or two, exhale, and reset your mask. This helps to relax you. I was able to keep my mask on all night last night. I woke up twice but was able to go back to sleep. It takes time to get used to the mask. It seems like you are having the same difficulties I had at first as well as many others. Just try to keep the mask on as long as you can and each night maybe you can keep it on a little longer until you make it all night. Good Luck.

Progress note:

- Enabled C-Flex (level 3) and increased pressure to 8 (from 7) and ramp pressure to 6 for 30 mins (vs 4 for 20). Amazing that C-Flex wasn't enabled considering how much easier it is to breathe against the pressure this way...
- I realized I need to put the mask on and turn the machine on for at least 30 mins prior to falling asleep to get used to the pressure and let my breathing adapt (the first 10 mins or so are the toughest for me which usually contribute to scaring the sleep away due to slight feelings of claustrophobia and asphyxiation). Maybe once I'm more comfortable with it I'll be able to slap the mask on and fall asleep without "adaptation" time.

I'm feeling more optimistic about it every day.

cpap joe wrote:I'm sorry, I didn't realize how anti-doctor these forums are. Sleep apnea is a medical condition and should be monitored by a doctor, not someone who thinks CPAP therapy is "only air". I know you are all very happy for how clever you are and you think you can handle this all yourself, but this is more than "just air". And by the way, he should see a cardiac specialist if he is having heart problems, not a pulmonary physician. I do agree that there are bad doctors out there, but that doesn't mean you should just give up on finding one.

I don't know that this Forum is anti-doctor. The fact is that a doctor, particularly a doctor who knows a patient is probably more knowledgeable about that patient's particular conditions. But the doctor doesn't have to live with those conditions. The doctor doesn't have to strap on a mask and try to breathe all night. The doctor doesn't have to deal with exhaustion every morning. As a consequence, the doctor spends quite a bit less time thinking about each individual's situation than that individual does.

If I had not learned from this Forum about software and card readers, I would still be dealing with central apneas caused by the fact that my titrated exhalation level was too high -- and it was too high because on the night of the titration, I slept miserably, with horrendous mask leaks and hideous hip pain.

By studying my daily readouts, I realized the exhalation pressure was too high, and called the respiratory therapist with my conclusions. She spoke with my doctor, and we revised the settings on my machine.

I almost never have full apneas any more -- but I'm still getting a handle on the hypopneas. Nonetheless, by making one change at a time and studying the daily results for a few days, my AHI is typically around 1-2. On the original pressures, it was anywhere from 6-10, with several apneas.

Oh, and the hip pain is gone, unless my AHI goes up.

If not for recommendations like the ones in this thread, I would not have achieved those results.

Will, I go back to the doc who sent me for the study? Probably not -- she's not a sleep doctor or a pulmonologist. She's a pain management specialist. I liked her, though. Will I seek out a sleep doc? Probably not, not as long as my software, and my card reader show me the results I need -- them and my hips. If my hips start hurting again, I'll probably talk to a sleep doctor.

Some of us are more anti quack... instead of anti doctor.

There are some good ones. Personally I rate my sleep doc/pulmo among the good ones.

alpha wrote:Progress note:

- Enabled C-Flex (level 3) and increased pressure to 8 (from 7) and ramp pressure to 6 for 30 mins (vs 4 for 20). Amazing that C-Flex wasn't enabled considering how much easier it is to breathe against the pressure this way...
- I realized I need to put the mask on and turn the machine on for at least 30 mins prior to falling asleep to get used to the pressure and let my breathing adapt (the first 10 mins or so are the toughest for me which usually contribute to scaring the sleep away due to slight feelings of claustrophobia and asphyxiation). Maybe once I'm more comfortable with it I'll be able to slap the mask on and fall asleep without "adaptation" time.

I'm feeling more optimistic about it every day.

Used the machine for 6.5 hours last night without waking up except once. I did not use ramp. I feel more refreshed than usual this morning! I still need to make sure the c-flex is doing it's job, which I will as soon as I get the card reader. If not, I'll take it off and use constant pressure. I do think 8 is the right number for me, at least unless the numbers show different.

Hey alpha,
A thought occurred to me reading your last two posts -- especially the one about putting the mask on 30 min. prior....
What you may want to try is to put the mask on during the day without the hose so there isn't a big restriction in the breathing - or with the blower if you want to experience the pressure, but if you just put it on and watch tv or read or whatever you can do hooked to the machine (within that 6' limitation.... ) it may help greatly with the claustrophobic feeling you get. It's just conditioning your brain to accept the fact you're wearing a mask!!!!

I'm glad that the higher pressure, C-Flex and ramp change seems to be working!!! If you have the flex turned on, it's probably working, but you're right -- check the numbers when you can!!!!
At a pressure of 8 you will probably be able to turn the ramp off completely once you're used to it. I turned the ramp off when my pressure was still 8, and I'm now at 11-15 range on APAP....
You seem to be doing really well -- keep up the great work!!!!
Take care
cheers
goose

RE: Anti Doctor.

I went to 2 different ENTs.

They both did an excellent job of diagnosing my potential for an apnea condition.

Went to the sleep study and confirmed what they suspected.

On my followup visits (to get a prescription for my CPAP), neither one of them knew the difference between CPAP and APAP.

I simply dictated what I knew at the time (information from this forum) what the prescription should be.

Went to the DME and got my APAP machine. I got the user manual as directed by folks here.

I had to buy 3 masks from CPAPAuction before I finally found a winner with a full face Quattro.

Docs have their place, and do a good job (mostly) identifying the problem, but the folks on this forum know a hell of a lot more about practical treatment for the problem.

Tony

PS: Keep in touch with your cardiologist. Your heart thing MAY be totally unrelated to your apnea. Or it may be something different that is aggravated by your apnea.