Please Help
I apologize in advance for the length of what I am about to write.
Last year, at the age of 38, I had a heart attack. Fortunately I was treated quickly, damage was minimal, and my heart function remains normal. As part of a follow up visit my doctor asked a few questions...
1. Do you snore? I only snore when I have a cold.
2. Do you take frequent naps? No, once I wake up for the day, I am up for the day. I never take naps.
3. Do you have difficulty staying awake? No, once I am awake, I am awake.
4. How well do you sleep? In my opinion I sleep really well. Occasionally during the warmer times of year I'll have a few nights that are a bit restless.
5. He asked my wife if she had ever seen me stop breathing? She answered no.
He then said, well, since you are overweight, you might want to consider having a sleep study done. At the time of my heart attack I weighed 369. I am 6ft tall. At the time of this visit I was down to about 340. Honestly I didn't think anything more about having a sleep study done. I slept great. I never took naps. I rarely snore. As far as I know I never stopped breathing.
A few weeks later I received a letter from my employer telling me that I would have a sleep study completed. I work for the railroad and as you can imagine liability issues are important in transportation industries. I called my doctor back to schedule a sleep study. Now he was curious as to why I would need one. I told him I needed one because he said I might want to have one and evidently in my records he wrote that he recommended that I have one. So that we are straight on that, he said I might want to have one, wrote in my records that he recommended that I have one, yet he was surprised when I was required to have one!
My doctor at the time was about 40 minutes away from where I live. I asked if I could go to a sleep study place nearer to my house. I was informed that they only used one particular sleep center that just happened to be in the same building as my doctor's office.
An appointment was made for me at this sleep center. By the time of the appointment I weighed about 235. I typically work an afternoon shift from about 3 to 11. I typically go to bed between 1 and 2 AM. I had to be at the sleep center at 7:30 and lights out was at around 8:30. The day before my appointment the sleep center called to confirm my appointment. I mentioned my typical sleep patterns and voiced my concerns about being able to fall asleep. I was advised to get a sleep aid from my doctor. My doctor told me to take over the counter benadryl. The night of the sleep study one of the tehnicians mentioned that their office was owned by my doctor and a few other doctors. That is a little convenient isn't it? She also acted from the get go as if they already knew I had a problem. She acted not as if they were there to see if I had a problem. She acted as if they already knew I had one and was just going through the routine. This bothered me! I work for the railroad. I can easily recognize being railroaded
So, I tossed and turned all night. My sleep was terrible! It was easily up there with the worst sleep I had ever had.
Imagine my surprise (sarcasm), when at 4 AM they woke me up, and she said I did indeed have an issue. Unfortunately she couldn't give any more details than that and I'd have to wait for the report.
About a month later I was contacted with some details of the report. Evidently I had mild sleep apnea and I would have to attend another sleep study to do the titration.
By the time of the titration I weighed about 210. I informed the lady that called to confirm my appointment of this. She said that the weight loss would make the previous sleep study useless and that I should contact my doctor to have the whole thing started over from ground zero. My doctor would hear none of this and I was told to go through with the titration.
I went through another restless night. If anything I slept worse at this sleep study than the other. By the time they came to wake me, I was already awake and struggling to breathe. I felt as if the mask was going to blow my chest up. I was sore for a day or two after. Imagine my surprise once again when I saw the report. It said that I fell asleep after 3 minutes! And the general impression was that I'd slept pretty well.
During this whole time nobody discussed my results with me or what they meant. It was as if I was just supposed to accept it and I wasn't supposed to ask questions.
A few weeks went by and I was set up to get my CPAP machine. It is a Resmed S9 Elite. My pressure is set at 11. After 229 days of use (100% compliant!), my AHI is a 0.5, total AI is 0.2, and central Ai is 0.1. Remember these stats. My understanding is that they are pretty good? Let me know if that is flawed.
I have recently switched doctors. My current weight is 285. My current doctor seems sympathetic to my story. He sent me to a pulmonologist that also seems willing to listen. This pulmonologist said that he generally doesn't even prescribe treatment for mild apnea if the patient has no signs or complaints of having it. Unfortunately with the railroad being involved, that isn't an option. He set me up for a new sleep study. He seemed surprised at my former doctor's recommendation of benadryl and I was now given a prescription for Ambien.
A few weeks go by and I show up at the sleep center. Fortunately for me, this one is independently owned. However, we go through the same feeling as last time. They already think they know I have a problem. I getting really sick of that. Should these places act like that before they even know? Are they all like that? How do you find one that isn't like that?
Well, I take my Ambien, and a short time later fall asleep. Then, I wake up, but I'm not able to move. I can barely make any noise but I try and try to get their attention. Finally I get their attention. Two technicians come in and are getting all the wires straight so I can go back to bed. About this time I notice there is a second bed in the room. I ask where it came from. I am informed that it has always been there. Uh, no, I'm sorry it hasn't! There was only one bed in the room I fell asleep in and now there are two beds. I again ask about the bed. I am informed that they set the CPAP machine on it. I tell them when I fell asleep I the CPAP machine was on a table. They act like I am silly and point out there is no table in the room. I start to panic as I know there was no second bed in the room when I fell asleep and there was a table. I start to take the wires off. They attempt to restrain me and I wake up. Yes, I had one of the most vivid nightmares of my entire life. The whole thing was a dream. When I wake up my chest is pounding and I am breathing hard. It takes a while to calm down and fall back to sleep. Once back asleep I continue to have various nightmares.
When I was awakened, the technician asked how I slept. I told her about the nightmares. And, get this, it was almost as if she wanted to argue against the night mares. She even went so far as to say they'd never move a bed in while somebody was sleeping. DUH! Did she not understand I was telling her about the dreams I had had. It sure didn't seem like she understood. I shut up. I didn't feel like talkingany longer.
So yesterday a new DME company called to get me set up with a CPAP machine. I had to explain to her that I already had a machine and a DME company with which I am dealing. While I ad her on the phone, I asked what they wanted my pressure to be set at. She said 17.
Okay, does that seem right? With a pressure of 11 over 229 days, my AHI is a 0.5, total AI is 0.2, and central Ai is 0.1 as recorded by my Resmed S9 Elite.
My doctor never called to discuss my results. I was called by the DME company wanting to get me set up. Isn't that a little like your doctor running blood work on you and a few weeks later the pharmacist calls with a prescription you are supposed to take?
I called my doctor. Of course I didn't get to talk to him. I left a message with his nurse. She called me back. I told her there had been a mix up on the set up for the CPAP machine. I also asked her about my new pressure setting of 17. My understanding of my current results is that my numbers are really good. I am surprised they want to up my pressure by that much. She claims that at 17 they were able to get me to 0 AHI. Frankly with my average being a 0.5, I am at 0 about half the time. I have seen a few people here say they are able to get their doctors permission to vary their pressure setting. I asked the nurse about this. She said no. I asked why. She said they need it at a set setting so they can see if it is working. When do they look at this? I've been using the stupid thing for 230 days now and I'm the only one that has looked at the stupid thing and my understanding is that 11 is working. Of course that understanding may be flawed. I have came to that conclusion by reading stuff here and other places, not from anything my doctors have told me.
You can probably tell that I am frustrated. I don't want to use the CPAP machine but if I need it I will. I believe I have demonstrated that by being 100% compliant. How do you get your doctor to actually work with you, listen to you and let you adjust your own settings? His nurse acted like I would be changing things at random. I know that isn't how it works and that adjustments are made slowly over time while keeping track of results.
I have rambled on for a long time. I should probably boil my questions down so they are easier to see/understand.
1. I have a resmed S9 Elite with a pressure of 11. Over 229 days, my AHI is a 0.5, total AI is 0.2, and central Ai is 0.1. Are these results good?
2. How do you get your doctor to discuss things with you?
3. I want to be able to adjust my own pressures within the doctors guidelines. How do I get to do that?
4. I plan to loose more weight and have another sleep study. Is there any advice for finding places that feel impartial? Frankly I'm sick of them acting like they know I have a problem before I show up.
As a side note, all of this has caused me some anxiety concerning my CPAP machine and my sleep quality has declined
Last year, at the age of 38, I had a heart attack. Fortunately I was treated quickly, damage was minimal, and my heart function remains normal. As part of a follow up visit my doctor asked a few questions...
1. Do you snore? I only snore when I have a cold.
2. Do you take frequent naps? No, once I wake up for the day, I am up for the day. I never take naps.
3. Do you have difficulty staying awake? No, once I am awake, I am awake.
4. How well do you sleep? In my opinion I sleep really well. Occasionally during the warmer times of year I'll have a few nights that are a bit restless.
5. He asked my wife if she had ever seen me stop breathing? She answered no.
He then said, well, since you are overweight, you might want to consider having a sleep study done. At the time of my heart attack I weighed 369. I am 6ft tall. At the time of this visit I was down to about 340. Honestly I didn't think anything more about having a sleep study done. I slept great. I never took naps. I rarely snore. As far as I know I never stopped breathing.
A few weeks later I received a letter from my employer telling me that I would have a sleep study completed. I work for the railroad and as you can imagine liability issues are important in transportation industries. I called my doctor back to schedule a sleep study. Now he was curious as to why I would need one. I told him I needed one because he said I might want to have one and evidently in my records he wrote that he recommended that I have one. So that we are straight on that, he said I might want to have one, wrote in my records that he recommended that I have one, yet he was surprised when I was required to have one!
My doctor at the time was about 40 minutes away from where I live. I asked if I could go to a sleep study place nearer to my house. I was informed that they only used one particular sleep center that just happened to be in the same building as my doctor's office.
An appointment was made for me at this sleep center. By the time of the appointment I weighed about 235. I typically work an afternoon shift from about 3 to 11. I typically go to bed between 1 and 2 AM. I had to be at the sleep center at 7:30 and lights out was at around 8:30. The day before my appointment the sleep center called to confirm my appointment. I mentioned my typical sleep patterns and voiced my concerns about being able to fall asleep. I was advised to get a sleep aid from my doctor. My doctor told me to take over the counter benadryl. The night of the sleep study one of the tehnicians mentioned that their office was owned by my doctor and a few other doctors. That is a little convenient isn't it? She also acted from the get go as if they already knew I had a problem. She acted not as if they were there to see if I had a problem. She acted as if they already knew I had one and was just going through the routine. This bothered me! I work for the railroad. I can easily recognize being railroaded
So, I tossed and turned all night. My sleep was terrible! It was easily up there with the worst sleep I had ever had.
Imagine my surprise (sarcasm), when at 4 AM they woke me up, and she said I did indeed have an issue. Unfortunately she couldn't give any more details than that and I'd have to wait for the report.
About a month later I was contacted with some details of the report. Evidently I had mild sleep apnea and I would have to attend another sleep study to do the titration.
By the time of the titration I weighed about 210. I informed the lady that called to confirm my appointment of this. She said that the weight loss would make the previous sleep study useless and that I should contact my doctor to have the whole thing started over from ground zero. My doctor would hear none of this and I was told to go through with the titration.
I went through another restless night. If anything I slept worse at this sleep study than the other. By the time they came to wake me, I was already awake and struggling to breathe. I felt as if the mask was going to blow my chest up. I was sore for a day or two after. Imagine my surprise once again when I saw the report. It said that I fell asleep after 3 minutes! And the general impression was that I'd slept pretty well.
During this whole time nobody discussed my results with me or what they meant. It was as if I was just supposed to accept it and I wasn't supposed to ask questions.
A few weeks went by and I was set up to get my CPAP machine. It is a Resmed S9 Elite. My pressure is set at 11. After 229 days of use (100% compliant!), my AHI is a 0.5, total AI is 0.2, and central Ai is 0.1. Remember these stats. My understanding is that they are pretty good? Let me know if that is flawed.
I have recently switched doctors. My current weight is 285. My current doctor seems sympathetic to my story. He sent me to a pulmonologist that also seems willing to listen. This pulmonologist said that he generally doesn't even prescribe treatment for mild apnea if the patient has no signs or complaints of having it. Unfortunately with the railroad being involved, that isn't an option. He set me up for a new sleep study. He seemed surprised at my former doctor's recommendation of benadryl and I was now given a prescription for Ambien.
A few weeks go by and I show up at the sleep center. Fortunately for me, this one is independently owned. However, we go through the same feeling as last time. They already think they know I have a problem. I getting really sick of that. Should these places act like that before they even know? Are they all like that? How do you find one that isn't like that?
Well, I take my Ambien, and a short time later fall asleep. Then, I wake up, but I'm not able to move. I can barely make any noise but I try and try to get their attention. Finally I get their attention. Two technicians come in and are getting all the wires straight so I can go back to bed. About this time I notice there is a second bed in the room. I ask where it came from. I am informed that it has always been there. Uh, no, I'm sorry it hasn't! There was only one bed in the room I fell asleep in and now there are two beds. I again ask about the bed. I am informed that they set the CPAP machine on it. I tell them when I fell asleep I the CPAP machine was on a table. They act like I am silly and point out there is no table in the room. I start to panic as I know there was no second bed in the room when I fell asleep and there was a table. I start to take the wires off. They attempt to restrain me and I wake up. Yes, I had one of the most vivid nightmares of my entire life. The whole thing was a dream. When I wake up my chest is pounding and I am breathing hard. It takes a while to calm down and fall back to sleep. Once back asleep I continue to have various nightmares.
When I was awakened, the technician asked how I slept. I told her about the nightmares. And, get this, it was almost as if she wanted to argue against the night mares. She even went so far as to say they'd never move a bed in while somebody was sleeping. DUH! Did she not understand I was telling her about the dreams I had had. It sure didn't seem like she understood. I shut up. I didn't feel like talkingany longer.
So yesterday a new DME company called to get me set up with a CPAP machine. I had to explain to her that I already had a machine and a DME company with which I am dealing. While I ad her on the phone, I asked what they wanted my pressure to be set at. She said 17.
Okay, does that seem right? With a pressure of 11 over 229 days, my AHI is a 0.5, total AI is 0.2, and central Ai is 0.1 as recorded by my Resmed S9 Elite.
My doctor never called to discuss my results. I was called by the DME company wanting to get me set up. Isn't that a little like your doctor running blood work on you and a few weeks later the pharmacist calls with a prescription you are supposed to take?
I called my doctor. Of course I didn't get to talk to him. I left a message with his nurse. She called me back. I told her there had been a mix up on the set up for the CPAP machine. I also asked her about my new pressure setting of 17. My understanding of my current results is that my numbers are really good. I am surprised they want to up my pressure by that much. She claims that at 17 they were able to get me to 0 AHI. Frankly with my average being a 0.5, I am at 0 about half the time. I have seen a few people here say they are able to get their doctors permission to vary their pressure setting. I asked the nurse about this. She said no. I asked why. She said they need it at a set setting so they can see if it is working. When do they look at this? I've been using the stupid thing for 230 days now and I'm the only one that has looked at the stupid thing and my understanding is that 11 is working. Of course that understanding may be flawed. I have came to that conclusion by reading stuff here and other places, not from anything my doctors have told me.
You can probably tell that I am frustrated. I don't want to use the CPAP machine but if I need it I will. I believe I have demonstrated that by being 100% compliant. How do you get your doctor to actually work with you, listen to you and let you adjust your own settings? His nurse acted like I would be changing things at random. I know that isn't how it works and that adjustments are made slowly over time while keeping track of results.
I have rambled on for a long time. I should probably boil my questions down so they are easier to see/understand.
1. I have a resmed S9 Elite with a pressure of 11. Over 229 days, my AHI is a 0.5, total AI is 0.2, and central Ai is 0.1. Are these results good?
2. How do you get your doctor to discuss things with you?
3. I want to be able to adjust my own pressures within the doctors guidelines. How do I get to do that?
4. I plan to loose more weight and have another sleep study. Is there any advice for finding places that feel impartial? Frankly I'm sick of them acting like they know I have a problem before I show up.
As a side note, all of this has caused me some anxiety concerning my CPAP machine and my sleep quality has declined
