"please keep me updated about oximeters "
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Venting on ups/downs, my lack of knowledge and defense of such of my CPAP treatment. Help.
There's a lot going on in my mind right now regarding my CPAP treatment.
I'm realizing the investment I had in believing my sleep doctor was excellent was really an investment in the appropriateness of my judgement and my trust. I have not really asked him questions about my therapy, I tell him how I feel, he looks at the numbers and changes things, I see him again in 6 weeks or four months or anything in between. In the meantime I watch my daily numbers and they vary widely, rarely do I meet the goal of less than 5 AIs, or AHIs an hour. I haven't asked him why. Why haven't I done that? (My numbers are 18/22, spont mode Resmed Vpap auto 25- lowest AI ever 1.7, usually 6 to 15))
Now I've gone through a hard period where I let my nose get so broken down (thin, bad skin) that I had to take 19 days off cpap to allow my nose to heal. For the past week I've been using a new FitLife total face mask and having trouble with it because to keep leaks down I have to sleep on my back, and I haven't consistently been able to do that. I'll call his tech on Monday to ask for help (I tried slipping my old quattro on last night for an hour or so and could just feel my nose starting to hurt again). I'm going to have to learn to deal with the FitLife mask, but maybe they can help me if I ask for help.
I'm also facing some Deep Brain Stimulation Surgery for Essential Tremor and I'm told that many people find it hard to wear their CPAP for several weeks after the surgery- it involves two different surgeries two weeks apart which affect the part of my head where the mask straps down and I'm told the straps can be very uncomfortable as well as inhibit healing. My surgery was scheduled for yesterday, but was postponed and I won't know until mon or tues when we will reschedule.
So I wonder, do I go ahead and call my sleep doctor Monday, or wait until everything has calmed down, I've had the surgery and I'm back on my CPAP regularly? But I've learned better than to wait on things that I have no idea when they will happen- so I think "call the sleep doc". Then I've also learned to try and be patient and accumulate enough data for the sleep doc (or psychiatrist, or anyone) to actually have some idea about how to help me.
I guess I feel somewhat foolish. I've wanted to believe I'm handling my OSA appropriately, but it's become apparent I'm not. I feel like I've spent nearly two years spinning my wheels, moving from appoinment to appointment wanting to believe I've asked the questions and understand the process when I haven't.
My regular sleep appointment is at the end of April, he said he would do another sleep study then and a MSLT for my continued daytime sleepiness (which is definitely worse now due to all the time off and the struggle with the new mask). So there's yet another choice/decision- wait until the end of April, my surgery should be well over by then and I should have gotten in the swing with the new mask or call him Monday and ask for help [At which time I do something good for myself- after the sleep study I see an ENT for evaluation (and can also ask the sleep doc why he doesn't recommend that I see and ENT, not for a cure, but just to be sure some surgery would not improve my numbers- Mike- thanks for that)].
So thanks for letting me go on and on- you're amazing if you could read the whole thing.
If anyone has any advice it would be appreciated. If this was one of you, I don't know what I'd say.
Again,
My thanks to all,
Mary Z.
Views: 182
Replies to This Discussion
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Permalink Reply by Mary Z on
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Rock, if I don't get my AHI down is there any reason to do a MSLT (I'll ask the Doc, too, in April). I have never gotten my AHI down for any length of time- a few days in a row sometimes. That's one reason I appreciate Mike bringing it to my attention that an ENT exam would be a good thing. Maybe it's anatomy that's preventing my improvement considering the changes we've made in CPAP therapy.
Thanks,
Mary Z.
Rock Hinkle said:99 part of the problem is her AHI being elevated. A higher AHI could cause excessive daytime sleepiness. This would cause a false positive on an MSLT.
Mary I feel for you. If there is anything that I can do to help please let me know. I have quite a bit of resources at my disposal.
99 said:also can they not do the sleep and MLST at the same time as one study
Mary Z said:Thanks, Mike,
Mary
Mike said:Wow, Mary... you're so committed to this, that I feel I need to reach out to you personally and help in any way I can.
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Judy, or anybody, do you replace the Macks silicone nightly? I was sure I had a good seal last night, but the leak data still said 1.7. I was sure I didn't have any leaks until after I went to the bathroom during the night so I checked before I hooked back up (don't take the mask off) and the leak then was 1.7. The lowest has been 0.76. Last night I managed to stay on my back all night, too. I need a different pillow LOL. Was using the regenesis which is great for side sleeping,, but felt like a brick last night. I'm posting this also to my review of the FitLife mask.
Appreciate any help re: Macks.
Thanks,
Mary Z.
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Permalink Reply by Judy on
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Mary Z, its almost impossible to get a consistently 0.0 Leak rate. As long as your reported Leak is < 0.4 L/s (24 L/M) don't even worry about it. Is your xPAP reporting in L/s or L/M?
The Mack's usually are good for at least 2 nights and for some up to 4 nights before needing to be replaced.
You might want to try this, set your VPAP Auto 25 to VAuto mode. Leave your IPAP and EPAP settings as they are now (IPAP 22 and EPAP 18, right?). Then set your Pressure Support to 4 (22 - 18 = 4) if it isn't already. With the PS set the exact number between EPAP and IPAP your VPAP Auto 25 is then running as a straight bi-level even tho in auto mode. This allows the new EasyBreathe technology to smooth out the pressure transitions on exhalation and inhalation. See if that makes any difference in your Leak rate.
And never believe one night's data (unless you feel rotten the next day), always stay at ONE change for ONE week whether mask or pressure change. For instance, USUALLY (altho not always) my data is better the first night with a change than in ensuing nights. What I call the "first night effect". On a few occasions I've had the opposite occur. But not very often.
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Judy, thanks, I'll try the changes. I never look at just a dayss data, usually thweekly or two week trend. L/sec. Yes, I'm looking for that under 0.w L/. I'm wondering if the sheer size of the mask- it's new with no ResMed counterpart so the leak data could be skewed.
Thanks,
Mary Z.
Judy said:Mary Z, its almost impossible to get a consistently 0.0 Leak rate. As long as your reported Leak is < 0.4 L/s (24 L/M) don't >
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jeff, no central apneas. In fact in view of my sleep studies it's a wonder I am on bpap at all. My first study showed 6 AHI, all eliminated at IPAP of 7 during titration. Later increased to 9. The second sleep study (different doctor) showed no AIs, 15 HI, overall AHI was 2.6. During titration an optimal pressure was never found. On a subsequent visit to the sleep doctor I was having 25 events an hour. Not having the dictated sleep study in my hand I didn't know to ask him about the difference. I didn't ask him later when I had a chance. I will ask him in April and I guess his answer will be important to me both as his effectiveness as a doctor, and mine as an educated medical consumer (which to my chagrin on the subject of my OSA treatment I haven't been). I've been titrated gradually over the course of three or four visits to 18/22.
Thanks, Mary Z.
j n k said:@ Judy: Sorry about the farshtunken sleep study.
@ Mary: Do you have a copy of your diagnostic sleep study? Can you remind me again of exactly what the diagnosis was? I am still unclear whether you are having central apneas, as Rock asked earlier. Maybe I missed it. I'm sure I've asked you this before. Sorry.
jeff
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Permalink Reply by RockRpsgt on
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Mary that is a question for your doc. My training tells me that an AHI>5 can and will cause daytime somnolence. The following is the AASM's stand on this issue:
http://www.aasmnet.org/Resources/PracticeParameters/PP_MSLTMWT.pdf
The presence of two or more SOREMPs was associated
with a sensitivity of 0.78 and a specificity of 0.93 [6.2.2].
SOREMPs did not occur exclusively in patients with narcolepsy,
and thus it is important to rule out or treat other sleep disorders
before evaluating SOREMPs in the diagnosis of narcolepsy.
Examples of other sleep disorders associated with SOREMPs
include obstructive sleep apnea, or any condition associated with
reduced nocturnal REM sleep leading to “REM rebound” during
the day. The number of SOREMPs increased with decreasing
mean sleep latency values on the MSLT [6.2.2
Mary Z said:Rock, if I don't get my AHI down is there any reason to do a MSLT (I'll ask the Doc, too, in April). I have never gotten my AHI down for any length of time- a few days in a row sometimes. That's one reason I appreciate Mike bringing it to my attention that an ENT exam would be a good thing. Maybe it's anatomy that's preventing my improvement considering the changes we've made in CPAP therapy.
Thanks,
Mary Z.
Rock Hinkle said:99 part of the problem is her AHI being elevated. A higher AHI could cause excessive daytime sleepiness. This would cause a false positive on an MSLT.
Mary I feel for you. If there is anything that I can do to help please let me know. I have quite a bit of resources at my disposal.
99 said:also can they not do the sleep and MLST at the same time as one study
Mary Z said:Thanks, Mike,
Mary
Mike said:Wow, Mary... you're so committed to this, that I feel I need to reach out to you personally and help in any way I can.
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Whoa!!! I don't understand how in the blue blazes they've gotten you up to 22/18 if your first PSG revealed an AHI of 6, no centrals and eliminated at IPAP 7 cms!! WHY was IPAP later increased to 9 cms? What was going on that brought that about? The second study at 9 cms revealed no apneas and an AHI of 2.6. What the h*ll were they looking for an optimal pressure beyond where you were at? Either there is something in those studies we aren't being told or your treatment is a crock of real smelly cowpuckies!!!! (Cowpuckies are beyond and below horsepuckies, MUCH worse!)
You NEED to INSIST on a copy of 1] the doctor's dictated results (1-2 pages each), the full scored data summary report w/condensed graphs (5+ pages each) and EVERY equipment order (script) and pressure change script from EVERY in-lab PSG or at-home APAP titration you have had!!! And you need to INSIST on them ASAP - like NOW!! "I" would NOT wait until April!!! I would FAX a written request for the above yet today.
Something is going on you and we don't know about - OR - you are being grossly mistreated and are on pressures twice what you appear to need from what you have told us!!
Mary Z said:jeff, no central apneas. In fact in view of my sleep studies it's a wonder I am on bpap at all. *My first study showed 6 AHI, all eliminated at IPAP of 7 during titration. Later increased to 9. The second sleep study (different doctor) showed no AIs, 15 HI, overall AHI was 2.6. During titration an optimal pressure was never found. On a subsequent visit to the sleep doctor I was having 25 events an hour. Not having the dictated sleep study in my hand I didn't know to ask him about the difference. I didn't ask him later when I had a chance. I will ask him in April and I guess his answer will be important to me both as his effectiveness as a doctor, and mine as an educated medical consumer (which to my chagrin on the subject of my OSA treatment I haven't been). I've been titrated gradually over the course of three or four visits to 18/22.
Thanks, Mary Z.
j n k said:@ Judy: Sorry about the farshtunken sleep study.
@ Mary: Do you have a copy of your diagnostic sleep study? Can you remind me again of exactly what the diagnosis was? I am still unclear whether you are having central apneas, as Rock asked earlier. Maybe I missed it. I'm sure I've asked you this before. Sorry.
jeff
*The bold emphasis was mine - Judy
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I agree.
Judy said:Whoa!!! I don't understand how in the blue blazes they've gotten you up to 22/18 if your first PSG revealed an AHI of 6, no centrals and eliminated at IPAP 7 cms!! WHY was IPAP later increased to 9 cms? What was going on that brought that about? The second study at 9 cms revealed no apneas and an AHI of 2.6. What the h*ll were they looking for an optimal pressure beyond where you were at? Either there is something in those studies we aren't being told or your treatment is a crock of real smelly cowpuckies!!!! (Cowpuckies are beyond and below horsepuckies, MUCH worse!)
You NEED to INSIST on a copy of 1] the doctor's dictated results (1-2 pages each), the full scored data summary report w/condensed graphs (5+ pages each) and EVERY equipment order (script) and pressure change script from EVERY in-lab PSG or at-home APAP titration you have had!!! And you need to INSIST on them ASAP - like NOW!! "I" would NOT wait until April!!! I would FAX a written request for the above yet today.
Something is going on you and we don't know about - OR - you are being grossly mistreated and are on pressures twice what you appear to need from what you have told us!!
Mary Z said:jeff, no central apneas. In fact in view of my sleep studies it's a wonder I am on bpap at all. *My first study showed 6 AHI, all eliminated at IPAP of 7 during titration. Later increased to 9. The second sleep study (different doctor) showed no AIs, 15 HI, overall AHI was 2.6. During titration an optimal pressure was never found. On a subsequent visit to the sleep doctor I was having 25 events an hour. Not having the dictated sleep study in my hand I didn't know to ask him about the difference. I didn't ask him later when I had a chance. I will ask him in April and I guess his answer will be important to me both as his effectiveness as a doctor, and mine as an educated medical consumer (which to my chagrin on the subject of my OSA treatment I haven't been). I've been titrated gradually over the course of three or four visits to 18/22.
Thanks, Mary Z.
j n k said:@ Judy: Sorry about the farshtunken sleep study.
@ Mary: Do you have a copy of your diagnostic sleep study? Can you remind me again of exactly what the diagnosis was? I am still unclear whether you are having central apneas, as Rock asked earlier. Maybe I missed it. I'm sure I've asked you this before. Sorry.
jeff
*The bold emphasis was mine - Judy
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Look, jnk and Rock Hinkle have been diplomatic and tactful and all that good stuff - I'm NOT - I AM saying that there is something in your studies we - and you - haven't been told about - OR - your treating sleep doctor(s) are a couple, bunch, or whatever of complete idiots and a$$holes. I PREFER to think that there is something in your sleep studies we don't know about and haven't been told about - but - based on the INCOMPLETE information we/I have at hand from you your therapy is bordering on malpractice. And I do NOT use that word lightly. Keep in mind w/o those study results I am forming conclusions in the blind. So don't get worked up and in a twit but DO get off your duff and INSIST on those reports via a FAX yet today or tonight.
Ooops! Mary Z - you aren't the one w/a muscle disease, are you?? What other concurrent health conditions do you have? I may be getting in a twit and totally off-base and out of line here.
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No muscle disease, Essential Tremor, Hypothyroid, Bipolar, Osteopenia, possibly some early onset of dementia (treated successfully with Aricept), I think that runs the gamut.
I understand what you are saying. I need to get the total chart from my sleep Doc. Somethiing is strange and it , well, I'll get the data and see.
Thanks,
Mary
PS: It's funny how I just went along with it. My OSA was worse, I thought, without the doctor saying anything but that one time that I was having 25 events an hour, and me just going along with anything he did, titrating up that high for mild to moderate sleep apnea, changing to BPAP when the pressures got to high for straight CPAP. How did I get from 2008 to here, with two sleep studies that were almost inconclusive.
Thanks again.
Mary Z.
Judy said:Look, jnk and Rock Hinkle have been diplomatic and tactful and all that good stuff - I'm NOT - I AM saying that there is
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Crap. I have a very good friend who is bi-polar. She often has a problem w/"credibility" with doctors. She's singlel so has no husband to accoompany her to doctor visits. There have been a couple of times she has had to ask me to go along w/her to lend her some credibility w/her doctors. She needs someone to verify that what she says is going on really is going on despite her bi-polar is very well managed w/her medications. She has and does an excellent job in a managerial positon and has for years. But too often her doctors question her credibility. Do YOU have anyone to advocate for you??
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And now I shall back off and leave advice in the hands of more reasonable, sensible people than I; our good friends, jnk and Rock Hinkle. I have a hair trigger when it comes to the medical profession when I perceive or suspect poor or shoddy care and treatment. I'm not deserting you. I'm just going to TRY to keep my mouth shut. Mind you, I did say TRY. No guarantees.
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