Replies to This Discussion

Permalink Reply by Renee on September 17, 2010 at 11:53am

Hello Mary ~

Earlier in this thread you ask if anyone thinks you are missing anything . . . I, for one, think you are always open to considering possibilities and alternatives and you sure seem to me to do everything as "rightly" as could possibly be done. And the are very generous in offering suggestions, advise and support to all on SG.

With all the knowledge you have attained and all your on-going efforts - you deserve an AHI of ZERO.

I am glad that you may be at the begining of a real good trend - hoping it continues as you continue to seek help from your doctors.

BTW, thank you for suggeting the Respironics FitLife mask, I am trying it out and it seems to be working very well for me.

All the best,
Renee
__________

Mary Z said:

Two days does not a trend make, but Sunday and today I woke up to an AHI of 4.8, and 7 and AI of 0.7 and 2.8. Maybe I'm finally on the downturn!
Will still check on the other things, psych meds, machine calibration, ENT visit?

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Permalink Reply by Renee on September 17, 2010 at 11:56am

Hello Mary ~

You work so hard and effectively to control your OSA . . . you've sure got my respect. All the best as you spend so much time and energy visiting with various doctors - and wishing you MUCH SUCCESS !

Best,
Renee
______

Mary Z said:

Well, j n k , that's a good place to start. I'll talk to my doctors about this. My sleep Docs father is also my neurologist and a psychiatrist, so he may be willing to consult on the matter (he may also be a sleep specialist himself). I also see my psych doctor next month and will discuss this with her. She does not know my BiPAP therapy has not been going well. She's pretty savvy and may have some ideas in the meantime. I just might have to bite some bullets, hopefully not so hard they fire. LOL!

j n k said:

If I were taking those seven medications (well, 6, not counting the Synthroid) and had an AHI of 20 made up of

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Permalink Reply by Renee on September 17, 2010 at 12:03pm

Hello again Mary,

I have found that on nights that I sleep with CPAP for 6-1/2 hours or less that all my numbers are "way" high: AI, HI, so, of course, AHI. I have found that not just consistently to be the case, but absolutely to be so. So now, although, I keep a record of those shorter nights use, I disregard those numbers altogether in figuring how my apnea is being controlled. And as Jeff mentioned, the HI numbers are not reliable on the ResMed machines. I keep track of my HI numbers just as a trend when I switch masks or change pressure. Hope this helps.

Best,
Renee

Mary Z said:

jeff , from 7/31 my AI numbers vary widely- 0.7, 2.8, 16.9 (yes), 9.2, 5.0, 1.3, 8.1, 2.0, 8.9. Some nights I don't sleep well and find myself finally getting off to sleep about the time my roommate gets up for work (3:00am). Those nights I know the numbers will be bad, perhaps because the AI is bad I don't sleep well (feel like I'm not sleeping, but it must be a very light sleep). I'll just wait and let the interventions I've done work, and keep losing weight until I see the doc on the 24th. Still I've never had any AI numbers as low as some of them so I am glad for even sporadic progress. Thanks for your insight. I'd be thrilled with and AHI consistenly below 5.
Mary Z.

j n k said:

Benadryl messes with my numbers, too. I no longer take it. With PAP therapy, fortunately, I don't need it.

Mary, what is your AI? If you are consistently below one, your range may basically

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Permalink Reply by Mary Z on September 22, 2010 at 5:11pm

The latest on this subject is after my last visit to the doc last month he ordered a new machine which goes up to a pressure of 30. He surprised me by getting me out of the office and to the tech to order the new machine so I didn't get to ask him if we should be exploring why the AI will not get into an acceptable range at a pressure of 24. He has proven to be hard to talk to, and I've proven not to be assertive enough to manage to stay in the office long enough to think and ask questions. I made an appointment with another sleep doc for a second opinion and an appointment with an ENT for evaluation (no openings until Dec.). The results from my last sleep test were very vague and from something the folks who unwired me said I'm not sure I was properly wired for testing. There was no mention of numbers in their report, so I think they must have messed up. Considering my whole relationship with this Dr. I think I will pursue the second opinion and a change of sleep docs. His sleep lab has proven to be unprofessional.

The pressure of 30 has proven impossible to maintain due to mask leakage. I took it on myself using what I've learned here and my last prescription to find the highest pressure that my mask can tolerate and adjusting the machine accordingly. I called the tech in the doc's office today to tell him this and he seemed amazed that I would change my own machine settings. I told him it was either change them myself or not use the machine- I was OOT at the time. He called back and said the Doc approved the new settings and the DME would be out to make the changes. I didn't say there was no need for that, figuring they had to cover their butts and make sure I had done things correctly. I was a bit taken aback that in his experience the tech had not encountered anyone with the knowledge and ability to get into the clinical menu to make necessary changes. Had I not been able to do that I would have been without the machine my whole vacation as the mask leaks completely disrupted my sleep. The RT at the dme was going to tell the doctor a pressure of 30 was too high for any mask ( or at least for me with my anatomy and the masks I am able to wear), but I guess the Doc knew best.
One of the worst things is the new machine does not give AI and AHI. I hope they'll be available via software download or the machine is of no use to the doc, or me, in judging results. When the RR rate is 4- *, I know there is some apnea going on. The dme tech had very little experience with this machine and did not know it would not give me needed data. I am going to try to swap it out for a machine that gives the data I need unless I can dowload it (still waiting for a new cable- different configuration from my S8 cable).

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Permalink Reply by RockRpsgt on September 24, 2010 at 2:57am

30cmwp!? I am so sorry Mary. I wish that you could come to me, or vice versa.

Mary Z said:

The latest on this subject is after my last visit to the doc last month he ordered a new machine which goes up to a pressure of 30. He surprised me by getting me out of the office and to the tech to order the new machine so I didn't get to ask him if we should be exploring why the AI will not get into an acceptable range at a pressure of 24. He has proven to be hard to talk to, and I've proven not to be assertive enough to manage to stay in the office long enough to think and ask questions. I made an appointment with another sleep doc for a second opinion and an appointment with an ENT for evaluation (no openings until Dec.). The results from my last sleep test were very vague and from something the folks who unwired me said I'm not sure I was properly wired for testing. There was no mention of numbers in their report, so I think they must have messed up. Considering my whole relationship with this Dr. I think I will pursue the second opinion and a change of sleep docs. His sleep lab has proven to be unprofessional.

The pressure of 30 has proven impossible to maintain due to mask leakage. I took it on myself using what I've learned here and my last prescription to find the highest pressure that my mask can tolerate and adjusting the machine accordingly. I called the tech in the doc's office today to tell him this and he seemed amazed that I would change my own machine settings. I told him it was either change them myself or not use the machine- I was OOT at the time. He called back and said the Doc approved the new settings and the DME would be out to make the changes. I didn't say there was no need for that, figuring they had to cover their butts and make sure I had done things correctly. I was a bit taken aback that in his experience the tech had not encountered anyone with the knowledge and ability to get into the clinical menu to make necessary changes. Had I not been able to do that I would have been without the machine my whole vacation as the mask leaks completely disrupted my sleep. The RT at the dme was going to tell the doctor a pressure of 30 was too high for any mask ( or at least for me with my anatomy and the masks I am able to wear), but I guess the Doc knew best.
One of the worst things is the new machine does not give AI and AHI. I hope they'll be available via software download or the machine is of no use to the doc, or me, in judging results. When the RR rate is 4- *, I know there is some apnea going on. The dme tech had very little experience with this machine and did not know it would not give me needed data. I am going to try to swap it out for a machine that gives the data I need unless I can dowload it (still waiting for a new cable- different configuration from my S8 cable).

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Permalink Reply by Mary Z on September 24, 2010 at 10:03am

Needless to say, Rock, I wish I could have come to you, too. My DME tech is an RT and very kind and experienced and even told the doc this wouldn't work, but the doc wouldn't listen to him. Needless to say I could not tolerate that pressure and we have put it down to 27, but I was so disgusted last night I went back to my last prescription of 24/20. I have an appointment with another sleep doc on Oct 12 and an ENT in December. After getting the bum's rush out of his office the last appointment- he advised me and his tech of the changes at the techs office, giving me no time to think or question ( I'm not very good at being assertive, but it's funny- it's only this doc I have trouble with). There are at least two very real problems here- why I didn't respond to a pressure as high as 24, and why we aren't looking for other reasons, hence the ENT. Maybe some simple surgery would help. The DME said he routinely sees very high pressures coming out of this guys office and thinks he may have overloaded himself and really has lost the time and ability to problem solve. There's also the fact that pressures this high can cause central apneas. Thanks again, Rock.

Rock Hinkle said:

30cmwp!? I am so sorry Mary. I wish that you could come to me, or vice versa.

Mary Z said:

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Permalink Reply by Banyon on September 27, 2010 at 8:07am

Mary, I forget which position you are sleeping in. If you are sleeping on your back have you looked into what pressure you need for side or tummy sleeping? Good luck with the new docs.

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Permalink Reply by Mary Z on September 27, 2010 at 11:59am

I'm a side sleeper, Banyon. With the FitLife Mask stomach sleeping is out of the question. It may be a trade off, but the FitLfe is the first mask I've found that works for me at higher pressures (though not an IPAP of 30) and without causing the skin on the bridge of my nose to break down.

I'm pretty disgusted right now- these new pressures are ridiculous (27/24 currently). I was having a lot of trouble getting to sleep, turned the pressure down even further, but still felt so uncomfortable I pulled off the mask and slept without CPAP last night. To reiterate what I'm doing - going for a second opinion and probably a new Doc on Oct 12 (thanks for the luck Banyon), an ENT consult in December (1st available). I hesitate to even call my present Doc with the trouble I am having- last time I saw him he gave me the bums rush out of the office and has not listened to My DME tech who is an RT and very experienced with CPAP and who told him this new machine was the point of diminishing returns. The DME also said he didn't know of a mask rated for pressures over 20. The VPAPIII ST-A gives data on RR, TV, Spont C and T, pressure, no AI or AHI and I don't even know if they are available by download. This machine has a 9 pin connection, but won't work with my 3.7 software. I don't have any idea if this is working or not. I think I need a new head on the problem- I can't imagine why we weren't getting good results at 24/20. Sorry for repeating the same stuff- it's just that I don't understand why this is not working for me, and I don't understand why my present Doc is not looking at that- the pressures prescribed may be causing central apneas. I'm at a loss.
Thanks for reading my rant.

Banyon said:

Mary, I forget which position you are sleeping in. If you are sleeping on your back have you looked into what pressure you need for side or tummy sleeping? Good luck with the new docs.

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Permalink Reply by Banyon on September 27, 2010 at 12:12pm

"an ENT consult in December (1st available)"

That seems to be a very important consultation. Some light needs to be shed on why the pressure needs to be so high.

I have had good luck getting quick appointments by being put on cancellation lists. I talked one lady into putting me at the top of the cancellation list. Another said they don't keep a cancellation list so I asked her if she would mind a call every day from me and she said OK. I starting calling every day at 4:30 and on the second day I got an appointment for the next morning.

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Permalink Reply by TorontoCPAPguy on September 30, 2010 at 12:52pm

You sound today like where I started about a year ago and I would not give up on this. There is no reason that you should not be able to get your numbers down to the point where they are approaching zeros! You certainly have had the time to titrate, adjust and play around and something here smells like a fish to me. We all seek the "golden bullet" and it begins with getting our blower to do its job and getting that AHI down and reducing or eliminating apnea and hypopnea events.

1. You absolutely need a machine that will provide you will good data. Period. You will never get the numbers down without it. It is like steering a ship through the fog without radar... you are just guessing.
2. You MUST educate yourself as best you can as to what all the data represents and how it affects AHI ultimately through apnea events and hypopnea events.
3. Your first target is your apnea events; unless they are all centrals you should, by virtue of changing pressures and masks be able to get that number down to almost zero (or to zero). Your pressures are WAAAAAY high and that would normally indicate a secondary factor in play that is affecting apnea events. These factors can include physical issues (blocking your ability to breath at night while laying down), sleep hygiene, drug effects, etc. Far to complex in scope to delve into here but, for instance, even if your nose is blocked by excess tissue when you are asleep it is generally less likely for your mouth/throat to block up in the same manner. An ENT MD should be consulted for examination for sure. And if it is very difficult to prevent the nose/throat blockages while sleeping it is possible that a full face mask and mouth breathing can offer some relief. In terms of sleep hygiene, one should dilligently follow a course of proper sleep hygiene (i.e. no light in the room, no sounds at night, proper temperature, to bed at 11 every night and up around the same time every morning, no eats within a couple of hours of going to bed and also no drinks... stay away from the salty stuff, visit the washroom before retiring, etc., etc.).
4. Next target is the hypopneas. The MD's should ALL be getting a list of your meds, printed out from your computer, along with (in red) the fact that your have OSA/etc. and the details of your treatment (pressures, etc.). You MUST tell them that medications that have an adverse effect on your OSA need to be reconsidered. Painkillers, especially narcotic painkillers as light as Tylenol #1 with codeine can have a major impact on your hypopnea events in L4 and REM sleep. MAJOR! So can ANY sedatives or medications that have a sedating effect such as Gravol (dimenhydrate) and analgesic meds of all kinds. I have found that by reducing or eliminating these meds I have been able to bring my numbers, with treatment, down into the under 1.0 range consistently.
5. A pulse oximeter is your friend. Get yourself a Contec CMS50E with Bluetooth. It will record up to 24 hours of SpO2 (blood oxygen concentration essentially) and has a rechargeable battery. About $120. Records SpO2 nightly to see if you are dropping below 90%. Anything below 90% is, in effect, respiratory distress (paramedics will give O2 if you are under 90%). I found that APAP therapy reduced my desaturations and improved sleep somewhat, but it took supplemental nightime oxygen from a concentrator (Everflo Q - $700) at 2L/M to keep me in the 'sweet spot' just above 90%. I actually began the O2 therapy on my own and took the resulting graphs in to both my sleep doc and my new pulmonologist this past week. ALL of my docs were supportive - albeit one had no clue whatsoever about OSA. Regardless of your numbers, if your SpO2 is running into troughs below 90% during the night - you are having issues and they URGENTLY need to be addressed as they run beyond simply a poor night of rest (which SpO2 <90%) will cause for sure by interrupting your L4/REM sleep (although there is talk of abolishing the L4 moniker) by causing your autonomic nervous system to elevate you out of REM or outright wake you up in a cold sweat as your blood pressure will skyrocket with low SpO2. THIS is a DANGEROUS issue and is not just about sleep. This is about "he/she died peacefully in their sleep". The fact is that he/she died from a massive coronary, stroke, aneurism, having their Aorta blown right off their heart or whatever due to skyrocketing blood pressure. Therefore, regardless of what your numbers from the blower are, you also need, urgently I re-emphasize, to keep a running track of your SpO2 and ensure that it is almost always above 90% and NEVER down into the low 80's or heaven forbid, the 70's. Since correcting this issue I have never had a night sweat again.
6. This is the thumbnail overview of what I personally (and I emphasize personally) perceive to be the course of action and important things that need to be taken care of. YOU need to be tenacious as a pit bull as your own advocate in this regards, both by educating yourself (I know more than most of my doc's at this point they keep telling me which is very sad) and demanding the care that you deserve and need.

A few points in general... masks. A mask that works for one person does not necessarily work for another. I personally am unable to use nasal pillows although I have not given up and have a half dozen upstairs to try out when I get around to it. In the meantime I have settled on the Mirage Activa LT in Large Wide to fit my face and sit on the fleshy parts properly for a great seal when smooshing my nose against my pillow. It is good but not perfect. The closest I have come to perfection thus far is the Mirage Quattro in Large (and I think I may need Medium) which seals like a submarine and addresses my plugged nose and flappy tissue issues and permits me to mouth breathe when necessary. It is so good that I only wear my Activa when watching television and prone to dozing off. It is YOUR task, should you choose to take it, to determine the best fitting mask to get the air blowing INTO you instead of onto your eyeballs. All of my masks, by the way, MUST have an adjustable forehead brace or I simply wont be bothered with them as I have been the way of the nose blisters at the bridge of the nose and the forehead brace eliminates the issue for me. A good seal is critical for consistent and valid treatment. It is absolutely critical especially with APAP where the pressure rising can blow out the seal and eliminate any efficacy whatsoever.

The use of a manometer is certainly a good thing and will ensure that your machine is working properly and calibrated well, but it is, of and by itself, not the be-all and end-all. I have one on order and it is for the purpose of ensuring that my blower is operating properly. A difference of half or one cmH2O is not a critical difference to be honest but I have noticed a huge difference in pressure being presented by one of my three machines (I have two ResMed S9 Auto's and one ResMed S8 Escape which I hate to use as it provides no data). A much more critical piece of kit to have is that pulse oximeter CMS50E as it will provide much more valuable (nay, CRITICAL) clinical data for you.

The only thing I don't have and wish I did is an EEG so I can see and corelate my REM sleep with events, but at this point I can almost point out the REM sleep by my pulse rate, SpO2, and the various data from the S9.

Sorry for being so long winded. The point that I want to make is simply this. In the year that I have been dealing with OSA/etc. I have found that even the best of the best sleep docs, respirologists, pulmonologists, etc., all taken together, do not know EVERYTHING and more importantly, have you scheduled into a time slot in their practices and therefore do not have the TIME to spend evaluating YOUR particular situation. It is simply not going to happen unless your dad or brother happens to be amonst that group. No chance. And therefore, you must educate yourself as completely as you are able both by reading about OSA/etc. and by learning from the experience of your friends and associates on these forums who already have the T shirt that you are seeking. And lastly, YOU and only YOU must be as tenacious as a pit bull in advocating for yourself and you MUST be open and honest regardless of how painful it may be with your spouse, children, family, etc., so that everyone is on the same page and understands. You need to realize as well that when you have achieved your "golden bullet" that it is not going to be 'bullseye' every night and there will be good nights and bad for whatever reason (a mask leak, had something to eat late, took in too much salt that day, full moon, etc.) - and you need to deal with same appropriately for your health.

Good luck on your journey and quest. If you are tenacious you WILL find that golden bullet eventually. Remember that it is highly unusual to be using pressures as high as you state you are using and that this will generally mean that other factors are in play... your sleep doc hasn't the time to deal with this in your allocated time slot as he has 50 other patients to see that day.... YOU need to ask for referals to the appropriate specialists and I would certainly begin with both an ENT specialist and the best pulmonologist I could find. Many areas have referal services (like "Best Doctors") but word of mouth has been best for me, personally. Get thee to the best of the best specialists and remember, when looking, that the cream rises to the top and becomes apparent with the naked eye.... you should be able to find the best and you should be able to get a referal from your GP or sleep doc. It is not a whim that you are following but rather a necessity on the path to your solution. You need to do it. And for crying out loud, start watching that SpO2. It's not the OSA nor the SpO2 desats that kill.... it is the resulting skyrocketing spikes of high blood pressure (which can be monitored automatically through the night with an Accutor or other recording BP system... but they will wake you up every time the damn cup inflates so it is impractical and you must settle on SpO2 and the assumption that desats create spikes in BP).

Good luck. Hope that my diatribe has offerred up some usable information. And remember, I am NOT an MD and the information needs to be taken, therefore, with a grain of salt and compared with what you know and what you can learn.

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Permalink Reply by TorontoCPAPguy on September 30, 2010 at 1:18pm

Mary Z said:

I'm a side sleeper, Banyon. With the FitLife Mask stomach sleeping is out of the question. It may be a trade off, but the FitLfe is the first mask I've found that works for me at higher pressures (though not an IPAP of 30) and without causing the skin on the bridge of my nose to break down.

I'm pretty disgusted right now- these new pressures are ridiculous (27/24 currently). I was having a lot of trouble getting to sleep, turned the pressure down even further, but still felt so uncomfortable I pulled off the mask and slept without CPAP last night. To reiterate what I'm doing - going for a second opinion and probably a new Doc on Oct 12 (thanks for the luck Banyon), an ENT consult in December (1st available). I hesitate to even call my present Doc with the trouble I am having- last time I saw him he gave me the bums rush out of the office and has not listened to My DME tech who is an RT and very experienced with CPAP and who told him this new machine was the point of diminishing returns. The DME also said he didn't know of a mask rated for pressures over 20. The VPAPIII ST-A gives data on RR, TV, Spont C and T, pressure, no AI or AHI and I don't even know if they are available by download. This machine has a 9 pin connection, but won't work with my 3.7 software. I don't have any idea if this is working or not. I think I need a new head on the problem- I can't imagine why we weren't getting good results at 24/20. Sorry for repeating the same stuff- it's just that I don't understand why this is not working for me, and I don't understand why my present Doc is not looking at that- the pressures prescribed may be causing central apneas. I'm at a loss.
Thanks for reading my rant.

Banyon said:

Mary, I forget which position you are sleeping in. If you are sleeping on your back have you looked into what pressure you need for side or tummy sleeping? Good luck with the new docs.

ENT is a great start. I think I would also want a blower that provides me a whole lot of data as well as a pulse oximeter. Wait until you see that ENT guy and remember that their first inclination if they find so much as a pimple is going to be surgery to correct it.... so don't freak out. Of all the folks that I know that have been to ENT including myself, perhaps one or two have gone with surgery and it is generally not the magic bullet.

So the questions arise (apologies if repetitious): (a) Do you have difficulty breathing through your nose or your mouth when standing erect?; (b) When laying down is it more difficult to breath when lying on your back versus lying on your side?; (c) without meaning to be crude in any way, if it is more difficult to breathe when lying on your back is it possibly due to a weight issue (either body mass in general or disproportinately large breasts)?; (d) when lying down either on your back or on your side do you have any difficulty with breathing while awake or is it a sleep issue?; (e) Are you taking any medications (no need to name them) that may be affecting your autonomic breathing while asleep? (analgeisics, sedatives, etc.) I know that I was taking a very common arthritis related medication that millions are taking and it is no longer on my list as it was suppressing my autonomic breathing during REM sleep.... I was taking oxycontin for crushed discs... GONE... then Percocet.... GONE.... then Tylenol 3.... GONE.... and am down to Tylenol #2 only when awake and moving and as needed for pain. Otherwise I simply... "cope".

I cannot rid myself of this gnawing feeling that something else is at play here with pressures so high. Fact is, when my first sleep doc told me to crank the pressure way up due to low SpO2 periods on my CPAP machine I fired him and went to APAP with data and ultimately to supplemental nightime oxygen at a mere 2L/M infused into the APAP line and diluted by the air from the APAP blower... and that tiny increase in oxygen content in the air being blown into me corrected the problem 95%.... I am still in the 'watching' stage to see just how corrected it is. But so far I have had only one night out of 14 where my SpO2 has dropped below 90%.

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Permalink Reply by TorontoCPAPguy on September 30, 2010 at 1:34pm

Re: Nuvigil
I would be asking if it could be contributing to your need for higher pressures and suppression of your breathing while asleep. Funny enough it is intended for those with OSA who are feeling tired during the day and it is contraindicated for those that have any trouble sleeping. Sic.

What are possible side effects of NUVIGIL?
•Common side effects of NUVIGIL are headache, nausea, dizziness, and trouble sleeping.

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