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I haven't been on SG for a long time, no motivation. I don't understand any of this. After over 2 years I'm still struggling. I'm 99% compliant and that's only because of occasionally drifting off in my little girl's reading chair when she wants me to sit in her room a while at night.
I am better. I don't get up a gazillion times a night to go pee and I'm able to read to my girl at bedtime without falling asleep during a sentence. My legs only occasionally feel crawley with RLS.
I don't think my doctors were even checking the AHI when I went into see them. I think they only checked compliance data. After getting on this site and learning a few things I started to be more than just compliant. I started getting pushy, I knew things weren't right. They put me on 2 different medications (at 2 separate times) for RLS which I did not tolerate well and resented being on because we did not really know if RLS was the cause of my problems. So, I finally got a new study and they lowered my pressure from 18/14 to 13/9 saying that perhaps I was having central apneas caused by the high pressure. But since they did not test my sleep at the old pressure of 18/14...how do they know? So here I am, it's been 2 months since my last study. I still feel rotten. They made me wait a month before they lowered my pressure so I've actually been on the new pressure since Aug 13th.
I asked to have a new mask to try. I'm able to keep my mouth shut now, well at least when I'm asleep! Heh, heh (^; After using the new swift light for 2 days my brain actually felt clearer! I thought, Holly cow! This is the beginning of my life! I was so happy! Well the next night my nose was so plugged that I could not use the nasal mask. I already use Flonase and the neti pot to keep a clear nose and don't have much problems during the day. Went back to the old mask for a few days. When my nose seemed clear at night I again used the swift light. It only lasted one night and my nose plugged up again. Now I feel worse and more depressed than ever after that one clear moment. Was it just a fluke, just a good day? I'm not so much sleepy as I am just fatigued and droopy with more headaches than I usually have. Most nights I'm sure I wake up a lot for very short periods. For the first time ever my husband said I was snoring with the mask on...but, that was only one time so far. So it could mean nothing.
The past couple of times I've had the therapist get all the data off the machine I was told that no data could be had because of a large leak. So we needed to try new masks. But this last time when I went in they checked the past data it showed all the data we needed. I don't understand. Why would they tell me they could not get data??
On Aug 12th, Leak 0.2, Tidal V 400, Minute V 7.6, RR 19, AHI&AI 1.2. Sep 15 says Leak, 0.1, Tidal Volume 450, Minute Ventilation 7.2, RR 18, AHI & AI 1.4. These were the times they said there were a large leaks. Next one on Sept 30th says Leak 2.4, Tidal volume 450, Minute Ventilation 7.6, RR 22, AHI&AI 1.1.
The times they said they could not get a reading there was no leak, low apnea and the next time there was supposedly a large leak but still no apneas. I'm so confused. I now insist on a copy and look at it myself. They gave me yet another mask to try. Tried it for a week, hate it. Didn't have or wouldn't give me a different hybrid to try. Said they might send me to an outside source. I tried a Resmed hybrid at the beginning of therapy and tried it again after the new pressure (cuz I still had it) but it still presses uncomfortably under my nose. I thought if I had a hybrid that maybe my nose would get used to the pressure going strait up it and I could eventually switch to the swift light again. No dice.
I wish I had a scanner to get information on here from my sleep studies but here are some of the results from July 21st '09. DATA SUMMARY During a recording time of 430 min, the patient slept 275 min. Sleep efficiency was 64%, sleep stage results...Stage 1:9%, Stage 2: 77%, Slow-wave Sleep (Stage 3-4): 2% and REM 11%. At optimal BiPAP pressure 13/9, episodes eradicated. PLM 57 per hour. That's it, that's all the info they say they have at this time.
I just don't know what to do. Where do I go from here? Is the data correct? Are the apnea's controlled? Do I actually suffer from depression? Is it a hormone imbalance? I'm so tired of being fatigued, unmotivated and blah!
I am better. I don't get up a gazillion times a night to go pee and I'm able to read to my girl at bedtime without falling asleep during a sentence. My legs only occasionally feel crawley with RLS.
I don't think my doctors were even checking the AHI when I went into see them. I think they only checked compliance data. After getting on this site and learning a few things I started to be more than just compliant. I started getting pushy, I knew things weren't right. They put me on 2 different medications (at 2 separate times) for RLS which I did not tolerate well and resented being on because we did not really know if RLS was the cause of my problems. So, I finally got a new study and they lowered my pressure from 18/14 to 13/9 saying that perhaps I was having central apneas caused by the high pressure. But since they did not test my sleep at the old pressure of 18/14...how do they know? So here I am, it's been 2 months since my last study. I still feel rotten. They made me wait a month before they lowered my pressure so I've actually been on the new pressure since Aug 13th.
I asked to have a new mask to try. I'm able to keep my mouth shut now, well at least when I'm asleep! Heh, heh (^; After using the new swift light for 2 days my brain actually felt clearer! I thought, Holly cow! This is the beginning of my life! I was so happy! Well the next night my nose was so plugged that I could not use the nasal mask. I already use Flonase and the neti pot to keep a clear nose and don't have much problems during the day. Went back to the old mask for a few days. When my nose seemed clear at night I again used the swift light. It only lasted one night and my nose plugged up again. Now I feel worse and more depressed than ever after that one clear moment. Was it just a fluke, just a good day? I'm not so much sleepy as I am just fatigued and droopy with more headaches than I usually have. Most nights I'm sure I wake up a lot for very short periods. For the first time ever my husband said I was snoring with the mask on...but, that was only one time so far. So it could mean nothing.
The past couple of times I've had the therapist get all the data off the machine I was told that no data could be had because of a large leak. So we needed to try new masks. But this last time when I went in they checked the past data it showed all the data we needed. I don't understand. Why would they tell me they could not get data??
On Aug 12th, Leak 0.2, Tidal V 400, Minute V 7.6, RR 19, AHI&AI 1.2. Sep 15 says Leak, 0.1, Tidal Volume 450, Minute Ventilation 7.2, RR 18, AHI & AI 1.4. These were the times they said there were a large leaks. Next one on Sept 30th says Leak 2.4, Tidal volume 450, Minute Ventilation 7.6, RR 22, AHI&AI 1.1.
The times they said they could not get a reading there was no leak, low apnea and the next time there was supposedly a large leak but still no apneas. I'm so confused. I now insist on a copy and look at it myself. They gave me yet another mask to try. Tried it for a week, hate it. Didn't have or wouldn't give me a different hybrid to try. Said they might send me to an outside source. I tried a Resmed hybrid at the beginning of therapy and tried it again after the new pressure (cuz I still had it) but it still presses uncomfortably under my nose. I thought if I had a hybrid that maybe my nose would get used to the pressure going strait up it and I could eventually switch to the swift light again. No dice.
I wish I had a scanner to get information on here from my sleep studies but here are some of the results from July 21st '09. DATA SUMMARY During a recording time of 430 min, the patient slept 275 min. Sleep efficiency was 64%, sleep stage results...Stage 1:9%, Stage 2: 77%, Slow-wave Sleep (Stage 3-4): 2% and REM 11%. At optimal BiPAP pressure 13/9, episodes eradicated. PLM 57 per hour. That's it, that's all the info they say they have at this time.
I just don't know what to do. Where do I go from here? Is the data correct? Are the apnea's controlled? Do I actually suffer from depression? Is it a hormone imbalance? I'm so tired of being fatigued, unmotivated and blah!
Views: 37
Replies to This Discussion
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Permalink Reply by sleepycarol on
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It took me a long time to get over the fatigue feeling and to feel more motivated. I have been on my apap since August of 2007 and last spring I seemed to be more fatigued and tired than before, although my numbers looked great. For me it took a summer vacation of actually catching up on my sleep to help.
I am much better now and have found that my ideal sleep time seems to be from around two or so in the morning to around ten in the morning. I feel just fine with 8 of sleep. Unfortunately work schedule doesn't allow those kinds of hours. I dreaded school starting, but the fatigue hasn't returned yet.
Keep hanging in there and see if things don't gradually improve. I know that isn't the answer you are wanting, but for me time was what I needed to pay off the huge sleep debt I had.
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Permalink Reply by RockRpsgt on
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Without being the aquisition tech it is tough to say what happened during your study. That data is horrible though. 13% deep sleep is very bad. It is no wonder you are still tired. What is you nightly AHI averaging? Does you paperwork say at what pressure apneas were stopped?
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Permalink Reply by bonesigh on
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Hi Sleepycarol,
Thanks for the note. Seems to me that I should be caught up by now. I was diagnosed in July of '07 and got my machine in Aug. It was very hard at the beginning with the pressure at 18/14. It probably took a good year with lots of problems before I was finally mostly used to it. I also sleep best during those hours you stated. I average 8 to 9 hours of sleep each night usually starting around 10-11pm. I just know I wake up a lot during the night and I have a lot of dreams that I remember. I'll keep plugging away, what choice do I have?
sleepycarol said:It took me a long time to get over the fatigue feeling and to feel more motivated. I have been on my apap since August of 2007 and last spring I seemed to be more fatigued and tired than before, although my numbers looked great. For me it took a summer vacation of actually catching up on my sleep to help.
I am much better now and have found that my ideal sleep time seems to be from around two or so in the morning to around ten in the morning. I feel just fine with 8 of sleep. Unfortunately work schedule doesn't allow those kinds of hours. I dreaded school starting, but the fatigue hasn't returned yet.
Keep hanging in there and see if things don't gradually improve. I know that isn't the answer you are wanting, but for me time was what I needed to pay off the huge sleep debt I had.
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Hi Rock,
Thanks for the reply. There's very little data to be had. The doctor said that they haven't got it yet. It's been 2 months. I don't know what the average AHI would be. I only have 3 printouts from them. AHI for each is 1.4, 1.2, and 1.1. I can't access this info at home. On their printout I can see that they use ResScan software. Does this mean that I could buy that program to access info on my Vpap lll? I tried to look up previously if it was possible for me but could get no clear answer. New study says that the apnea's were controlled at 13/9 instead of 18/14. I've been trying to talk them into a machine that can give me info at home. My doctor is for it but the tech does not think patients should access that info.
Rock Hinkle said:Without being the aquisition tech it is tough to say what happened during your study. That data is horrible though. 13% deep sleep is very bad. It is no wonder you are still tired. What is you nightly AHI averaging? Does you paperwork say at what pressure apneas were stopped?
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Permalink Reply by susan mccord on
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It seems to me that if your MD approves of your having access to data, that should be HIS/HER call, not the DME's........did the MD give you a letter or a prescription ordering data be released to you? If not, maybe that would help. I just can't imagine a DME can override an MD over something as simple as data, which you have a legal right to have.
I've only been diagnosed since the end of June '09 and on CPAP since July, so I'm NOT an expert on any of this stuff. Two years seems like a long time for someone to suffer as you have without some kind of intervention by SOMEBODY. Call me crazy, but if PAP treatment it as worthwhile as everyone seems to think it is (and to date, mine has been), looks like some kind of major mixup with equipment and/or diagnostic impression to me.....
What do you guys think? This kind of suffering in a compliant patient makes NO sense to me after so much time has gone by !!
What should she do? Have another sleep study at another clinic? Have her MD intervene? Good grief, someone must know something that would be helpful......I'D sure be discouraged, and angry, if I were in this kind of position with no help forthcoming.......
Susan McCord
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Fortunately for you doc always trumps tech. If we were playing euchre the doc would be the jacks. i am not sure how to get the software. Someone else will have to help you with that. When you do we will be able to help you a little better.
bonesigh said:Hi Rock,
Thanks for the reply. There's very little data to be had. The doctor said that they haven't got it yet. It's been 2 months. I don't know what the average AHI would be. I only have 3 printouts from them. AHI for each is 1.4, 1.2, and 1.1. I can't access this info at home. On their printout I can see that they use ResScan software. Does this mean that I could buy that program to access info on my Vpap lll? I tried to look up previously if it was possible for me but could get no clear answer. New study says that the apnea's were controlled at 13/9 instead of 18/14. I've been trying to talk them into a machine that can give me info at home. My doctor is for it but the tech does not think patients should access that info.
Rock Hinkle said:Without being the aquisition tech it is tough to say what happened during your study. That data is horrible though. 13% deep sleep is very bad. It is no wonder you are still tired. What is you nightly AHI averaging? Does you paperwork say at what pressure apneas were stopped?
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I have Kaiser insurance. I don't know why they don't have the information from the study just done in July yet. The study was done by Sleepmed. The tech was telling me the last time I was in it's hard for them to follow up with patients that have already been diagnosed. Because of a policy that Kaiser has they must get new patients in to be seen within 10 days so that makes it hard to follow up on the current patients having trouble. What a joke.
I don't know why my new doctor doesn't just order me a new machine. She's new there and only works part time. Though I really liked her when we met, she seemed full of p*** and vinegar, nothing has been done yet. And what's with the miss reading of the downloaded info from my machine. I have another appointment to see her at the beginning of November. Maybe I'll get some answers.
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Find another doctor. If she's new and inundated with new patients, she must not have her practice under control. If there's another more experienced sleep MD in the same practice, ask to see that person. Or go elsewhere if you have to.
Do you know of any other sleep docs in your area? Do you have a primary care doctor? A lot of times a referral from another MD will get things moving. They don't like to ignore a medical peer's referral.
You're in a very frustrating position if you have a sleep MD who isn't with the program for whatever reason. I went over 3 months with NO sleep specialist, and it drove me nuts too.
Susan McCord :-)
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Unfortunately Kaiser insurance only works with "Their" doctors. The first sleep doc that I saw, just this year for the first time, was a real jerk! Said I wasn't serious about getting better because he had never seen me before. I didn't know I needed to see him! Kaiser only sent me to see the respiratory therapist. And this doc is almost 2 hours away. I was very happy when they got the new sleep doc that was closer to me (1hr away). I liked her at the time but have gotten nowhere so far. I'll try with her again in Nov and then I don't know what to do. There are no other sleep docs within the Kaiser practice near me. I don't know how far I would have to travel for a different doc and who knows how good they would be
susan mccord said:Find another doctor. If she's new and inundated with new patients, she must not have her practice under control. If there's another more experienced sleep MD in the same practice, ask to see that person. Or go elsewhere if you have to.
Do you know of any other sleep docs in your area? Do you have a primary care doctor? A lot of times a referral from another MD will get things moving. They don't like to ignore a medical peer's referral.
You're in a very frustrating position if you have a sleep MD who isn't with the program for whatever reason. I went over 3 months with NO sleep specialist, and it drove me nuts too.
Susan McCord :-)
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Permalink Reply by gordon on
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I'm sorry your having such a rough time of this. I did have Kaiser who referred me to their equipment supplier, where they retested me (took home) but I never needed a specialist. I use Mirage Swift nasal pillow mask, and it IS a problem if you have sinus problems. I used to drink too much wine and I know now the sulphites we're making me congested, so I got addicted to Flonase, which ruined my sense of smell, which I still don't have.(It says it's a side effect) Flonase worked in the beginning, but not drinking did the trick. You may be allergic to some food, this may be something you need to find out. Maybe the air, feathers in pillows, how about a room air filter? I tried the vaporizer in the room, didn't work. I assume you change the filters. cpapplus makes a plastic globular "bacteria filter" which goes between the supply hose and your machine, (about $5.00 I think, see cpapplus.com/bacterial filters) that gives you (3) filters before it gets to the mask. As someone who had allergies as a kid, I truly hope you can solve this and be able to use the nasal mask. Keep us posted.
bonesigh said:Unfortunately Kaiser insurance only works with "Their" doctors. The first sleep doc that I saw, just this year for the first time, was a real jerk! Said I wasn't serious about getting better because he had never seen me before. I didn't know I needed to see him! Kaiser only sent me to see the respiratory therapist. And this doc is almost 2 hours away. I was very happy when they got the new sleep doc that was closer to me (1hr away). I liked her at the time but have gotten nowhere so far. I'll try with her again in Nov and then I don't know what to do. There are no other sleep docs within the Kaiser practice near me. I don't know how far I would have to travel for a different doc and who knows how good they would be
susan mccord said:Find another doctor. If she's new and inundated with new patients, she must not have her practice under control. If there's another more experienced sleep MD in the same practice, ask to see that person. Or go elsewhere if you have to.
Do you know of any other sleep docs in your area? Do you have a primary care doctor? A lot of times a referral from another MD will get things moving. They don't like to ignore a medical peer's referral.
You're in a very frustrating position if you have a sleep MD who isn't with the program for whatever reason. I went over 3 months with NO sleep specialist, and it drove me nuts too.
Susan McCord :-)
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