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Please Help - Not Sleeping Well - 05-02-2012
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
RE: Please Help - zonk - 05-02-2012
Hi Not Sleeping Well and welcome
AHI excellent wouldn't change a thing for now (Why fixed if ain't broken)
Its not the aim to zero AHI night after night which is impossible but said below 5 is good therapy.
How do you feel, getting a good night sleep, finding a comfortable mask and keeping it on all night is important too.
S9 setup info and video
http://www.apneaboard.com/resmed-s9-cpap-setup
RE: Please Help - cbramsey - 05-02-2012
Welcome to the board Not Sleeping Well.
Your present AHI readings of 0.2 is excellent. Why fix something that isn't broken.
The difference in your weight (235 before vs. 285 for the 2nd study) might explain the change in your setting. Don't think it be THAT much difference in settings.
Sorry you are having all your issues with the medical community, DME's, etc.
RE: Please Help - JumpStart - 05-02-2012
(05-02-2012, 02:38 PM)Not Sleeping Well Wrote: 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
Hi NotSleepingWell. Welcome to the forum. Sorry for the problems you are having, but they are unfortunately not unique to many of the members here.
In response to your questions:
1. Your numbers are not good, they are excellent. Very many on this forum would like to have those - I know I would.
2. If you can't get your current doc to do so, you change doctors. Since I don't know where you live, it may be that doctors are in short supply. If so, you may have to go to a nearby larger town. It certainly sounds like you haven't found a good one so far. Any qualified and caring doctor will not only discuss your concerns, they will address them. You also might make an appt SOLELY to go over your questions, and let the doc's office know before hand that is the purpose. I would also write a complete list to take with me so I would be organized, and also so I didn't overlook anything. This method MAY get your doc to actually pay attention.
3. Not sure if your question is how to get your doc to agree to do so, or how to physically insure what your pressure settings will be. The latter is easy - get the clinician's manual, and it will show you exactly how to do that and much more. For the Elite and other manuals, go here .
4. I have no advice on that other than ask around, if you know anybody else with OSA. Another step would be to insure you do NOT go where your physician has an interest, although the smaller or more rural the area, the more difficult that might be to accomplish. If time permits, you might visit the facility and simply talk to whomever is in charge. I am near a very, very good facility, and have an equally good and concerned board certified sleep doctor, so I have no experience in doing any of these things. Just throwing out ideas.
With the disclaimer that I am not an MD, I personally would leave my pressure @ 11, at least until a new study was done. I would also be rather firm with my doc that I did NOT want to change anything which was working, and that those numbers are really good. If you are going to find a better doc, I wouldn't even ask. You have the machine, you can get the info (see above) to keep your pressures where you want, and my thought would be to tell your doc sayonara. The idea of 0 AHI as a nightly experience for a person with OSA is foolish in the extreme, IMO.
RE: Please Help - PaulaO2 - 05-02-2012
What everyone else said.
I am going to assume you live in the US. What I would recommend is to do research into HIPAA. Then contact both sleep centers and/or both sleep docs and request a copy of your sleep studies. Don't let them get away with saying it is a huge document that won't make sense to you. While that may or may not be true, it is part of your medical history and therefore they cannot deny you access. If they refuse, or if they say they no longer have it on file, mention you will then be filing a HIPAA complaint.
You need to see these reports in order to understand this issue. It is those reports that they are basing your treatment on. Knowing the numbers from those reports is very important both for your own knowledge as well as for in the future. And for comparison.
RE: Please Help - Not Sleeping Well - 05-02-2012
I would like to thank everybody for their friendly and understanding advice. I am about fed up with doctors that tell me what to do without telling me why. I'll be making a call to get some answers. Let me answer some of the questions you all have asked me.
(05-02-2012, 03:22 PM)zonk Wrote: AHI excellent wouldn't change a thing for now (Why fixed if ain't broken)
Its not the aim to zero AHI night after night which is impossible but said below 5 is good therapy.
Thank you for confirming what I thought. It is like my doctor wants to ignore 230 days of info from my machine and go only with the sleep study.
(05-02-2012, 03:22 PM)zonk Wrote: How do you feel, getting a good night sleep, finding a comfortable mask and keeping it on all night is important too.
I think I am doing fairly well with this. Although to be honest the quality of my sleep is nowhere near as good as it was before I had to start using the CPAP. The funny thing is in the morning when I wake up, I can say if I had a good nights sleep or not before looking at my machine. Then, when I look at the machine, if it was good my AHI is typically 0 to 0.4. If I think I had a bad nights sleep it is between a 0.7 and and a 1.2.
(05-02-2012, 04:59 PM)cbramsey Wrote: The difference in your weight (235 before vs. 285 for the 2nd study) might explain the change in your setting. Don't think it be THAT much difference in settings.
I mistyped that, the first weight was 335. The next weight, my current weight is 285. That is why I am baffled at the desired increase in pressure. At 335 my pressure was prescibed at 11. Now, 50 pounds lighter, they want to change me to a 17. That doesn't make sense to me.
(05-02-2012, 05:11 PM)JumpStart Wrote: 3. Not sure if your question is how to get your doc to agree to do so, or how to physically insure what your pressure settings will be.
My question is how to get my doctor's blessing to do so? I asked his nurse as the nurse is the one that returns all of his calls. She said they didn't like for patients to do that becasue according to her if I changed pressures all the time, the data on my machine would be useless. When I call, I am going to tell them I am going to change my pressures and I want some guidelines. I'm not going to ask permission. Also, I am really curious why she was worried about me messing up the data when, currently, they are completely igonoring that data.
(05-02-2012, 05:38 PM)PaulaO2 Wrote: I am going to assume you live in the US.
Yes, I do. I live in Oklahoma City, Oklahoma.
(05-02-2012, 05:38 PM)PaulaO2 Wrote: Then contact both sleep centers and/or both sleep docs and request a copy of your sleep studies.
Thanks for the reminder. I have copies of my first two studies, but I don't have one from my most recent study. I'll be sure to get one when I call.
I'd really like to thank everybody for the warm welcome. I was pretty diappointed to hear my doctor wanted to increase my pressure. I was hoping that, considering the lack of quality in my first studies and the significant weight loss, that I may be able to stop using my machine. I was pretty surprised and very disappointed to hear they wanted to increase my pressure.
Thanks again,
Jim (AKA Not Sleeping Well)
RE: Please Help - Not Sleeping Well - 05-02-2012
Just to clarify, it looks like I messed up my weights quite a bit above. I weighed 369 when I had my heart attack. At the first sleep study I weighed 335. At the second study I weighed 310. At my last study I weighed 285. 285 is also my current weight.
thanks,
Jim
RE: Please Help - PaulaO2 - 05-02-2012
So what do the sleep reports say? What was the number of events prior them hooking you up to a CPAP?
RE: Please Help - Not Sleeping Well - 05-03-2012
(05-02-2012, 11:31 PM)PaulaO2 Wrote: So what do the sleep reports say? What was the number of events prior them hooking you up to a CPAP?
Paula, my first study was just of sleeping, they did no titration or anything like that. This report says, among other things, that "the patient had 11 obstructive apneas and 72 hypopneas yielding a total apnea/hyponea index of 12.3 per hour. No significant worsening was noted during REM sleep. The REM apnea/hyponea index was 9 and the non-REM apnea/hyponea index was 13 per hour."
My second study, which was my titration study doesn't give any information like the first. It mostly talks about my previous study, my Epworth score of 1, and then goes on to talk about how many minutes I slept, heart rate, etc. It then goes into "CPAP was initiated from the onset of the study starting at a pressure of 5 cm H2O using a medium size Resmed Quattro FX interface. The pressure was titrated up to 13 cm H2O. An optimal pressure was achived at 11 cm H2O to reduce the apnea/hyponea index to 5.4 events per hour." This is the study at which they claimed I was asleep after 3.5 minutes. This is inaccurate. I remember checking the time at least 15 minutes into the study.
Both of these nights involved using Benadryl to sleep at the recommendation of my doctor. I have since heard Benadryl exacerbates sleep issues?
RE: Please Help - PaulaO2 - 05-03-2012
At 12.3 per hour, that's considered mild apnea.
I am surprised it took 11 cmH2O to get it down to 5.4 AHI.
What I meant, though, was not the doctor's report but the sleep study data itself. Why did they go to 11? What was the AHI at 7 or 8? During the test, did you experience any central apnea events?
Ultimately, you are the one in charge of your health. I see that you have the S9 Elite which is data capable. You can get ResScan or SleepyHead software to view the data. Using one or both, you can see how well the treatment is going. An AHI of 0.5 is freakin' great.
What you could do is titrate yourself vs getting another sleep study. Especially since they are so much fun for you. It would take a long time to do and you have to be patient. If you had an AutoPAP, it would be easier.
Use the setting of 11 for two or more weeks and note the average AHI. Knock it down to 10.5 for another two weeks and again note the AHI. If the AHI goes up, then stick with 11. If it is the same, consider going down another half point for another two weeks. You can also try the new prescribed pressure of 13 but keep an eye on the data for "central events" or I think it is called "clear airway" events. You do not want that number to go up.
Another sleep study would not be needed so quickly unless you lost I guess fifty or more pounds. I would assume that the neck circumference difference is the ultimate decision maker. If you lose a lot there, then, yes, your needs may have changed.