Can't sleep w/o meds.

BlackSpinner wrote:Use which ever meds you need to help you sleep for the next couple of months. Give your body a chance to heal from the damage done by OSA. Battle one big issue at the time and don't sweat the smaller stuff. Tell your family to help or to suck it up, short time of inconvenience so that you will be around in the long term.

Yeah, I am basically in agreement.

I guess I am very fortunate that my family is totally supportive.

Thanks for your interest.

Delete

AHI15 wrote:

Guest wrote:A couple of thoughts.
If you're using a range of pressures on your APAP, that would be my first suggestion of things to change......switch to CPAP mode with a single pressure. Pressure ranges can really mess up your sleep.
From my own personal perspective, if I had to try to sleep with nasal pillows shoved up my nose, I'd need to be heavily medicated to try to get to sleep, too.
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guest, you seem to have experience with CPAP, yet speak vicariously as if you don't actually use it yourself.

This is an interesting idea, but probably not a problem in my case. That's because, the max pressure I've actually seen the machine go to seems to be around 9, averaging about 7.5. This is quite mild compared to many people. My prescribed setting is 6-11.

I don't yet have the ability to see the machine data, until I get the SD card reader, which is in shipment.

Thanks for input.

Actually, about seven and a half years of XPAP experience (CPAP and APAP) and that many watching people on this forum screw up their sleep with ranges of pressures on APAPs.

APAP machines (through their sensors and various algorithms) interpret breathing patterns and events to try to decide whether they should increase, decrease or leave the pressure alone. Some people are sensitive to these machines changing pressures throughout the night. For an example, as a person goes into REM (or deeper stages of) sleep, their breathing patterns change. The APAP may unwisely interpret this as needing to increase pressure(s).......when this happens, the person may be jolted out of those much-needed sleep stages by the pressure bumps.

I've seen your predicament hundreds (if not thousands) of times on these forum pages.
Don't be naive and think a few pressure changes won't have an effect or that a "narrow" range can't mess up sleep.
Your other (big) problem has been that you haven't been utilizing software to actually see what's going on during the night. The summary numbers from the machine don't give much of a picture.

When you get desperate enough for some "good" sleep, try CPAP mode with a fixed pressure.
And, if you're fixated on your mask and are bothered by the air blowing into your nasal passages, try another type of mask (like a full face mask) that disburses the airflow over a wider area.

Good luck.

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Guest, you might be one of those physicians who know hardly anything about AutoCPAP machines such as the Resmed S9 Autoset.

From personal experience and as others have repeatedly mentioned on this site, I would advise slowly tapering off of benzo drugs and other sleep meds. Taking them for a few days, then resuming just makes it harder in the long run and can be very frustrating when you lack sleep for days on end. For me it took a month to taper off... every few days slicing off a smaller portion with a single edged razor blade. There will be some tough nights but the results are worth it. As a side note: a small group of people report the last 5% is the toughest and they had to go to the doctor to get something to help them over the last week or so. Unfortunately I don't remember what the doctor prescribed for them For more info type in "Tapering off benzo" in a Google search and you will get a lot of hits. Browse around till you find a site you think you can trust.

Guest wrote: Actually, about seven and a half years of XPAP experience (CPAP and APAP) and that many watching people on this forum screw up their sleep with ranges of pressures on APAPs.

APAP machines (through their sensors and various algorithms) interpret breathing patterns and events to try to decide whether they should increase, decrease or leave the pressure alone. Some people are sensitive to these machines changing pressures throughout the night.

Hmm, this is interesting.

Guest wrote:For an example, as a person goes into REM (or deeper stages of) sleep, their breathing patterns change. The APAP may unwisely interpret this as needing to increase pressure(s).......when this happens, the person may be jolted out of those much-needed sleep stages by the pressure bumps.

I've seen your predicament hundreds (if not thousands) of times on these forum pages.
Don't be naive and think a few pressure changes won't have an effect or that a "narrow" range can't mess up sleep.

Your other (big) problem has been that you haven't been utilizing software to actually see what's going on during the night. The summary numbers from the machine don't give much of a picture.

When you get desperate enough for some "good" sleep, try CPAP mode with a fixed pressure.
And, if you're fixated on your mask and are bothered by the air blowing into your nasal passages, try another type of mask (like a full face mask) that disburses the airflow over a wider area.

As I mentioned the SD card reader I need so I can use software is being shipped as we type.

So, you would recommend then to look at the pressures used for some time by the APAP, then make an educated guess at what constant pressure to set the machine to?

It also seems like you aren't a big fan of nasal pillows. I picked them as the first mask since they seemed to be the least intrusive. But I don't really know for sure and will soon set about deciding what next mask to try when I can get another.

For my nasal pillows, they don't bother me by blowing up my nose. The only things that bug me are:

1. laying on my side the side straps press against my cheek bones, despite being cushioned, and cause some discomfort.

2. The vent on the swiveling nose piece when laying on my side, blows against the pillow and makes noise or the wind can be felt on my hand or face.

Then I have to fuss about trying to get by blanket over the vent to diffuse the flow, and it becomes a big pain in the ass and I wouldn't be able to fall asleep were it not for the meds.

So there is work to be done to optimize this treatment.

Thanks for input.

AHI15 wrote:

robysue wrote:

AHI15 wrote: What do you think I should do at the very last 1-2 hours of the night, at about 5-7am, when dawn hits and I generally have a VERY iffy chance of getting some more sleep? This last hour of sleep also can make the difference between having a headache and being dizzy with fatigue, ie., an "F" day where I can't work, or a "D" day where I can work.

Should I force myself to try to fall asleep one last time with CPAP, then if I fail just accept the resulting wasted day, hoping that the next night sleep pressure will be stronger making me sleep deeper?

Neither of these ideas what you should be doing in my opinion.

What I'm going to say is highly counter intuitive and your initial reaction will be: That's IMPOSSIBLE!!!!!

But my advice is this: If you wake up between 5 AM and 7 am and are unable to get back to a good sleep with the CPAP on, you probably should just get up for the day. In other words, give yourself a reasonable bit of time to get back to sleep with the mask on. But if you are still not asleep at the end of what feels like 15-30 minutes OR if you find yourself becoming MORE alert and less sleepy, then make yourself get out of bed and start your day.

[

My objective side would tend to agree that in general this is probably the best thing. But I'm still not sure, depending on special circumstances.

I'm sorry if it sounds as though I'm holding your toes to the fire, but you've said something important here: You objectively understand that you should just get up if you wake up an hour or two early and can't get back to sleep with the CPAP on, but you choose to believe that it is still somehow ok for you to sleep that extra hour or so without your mask on.

But unfortunately that is leading to establishment of a very bad habit of "taking your mask off just so you can sleep". And that bad habit will become more difficult to break as it becomes more established. And it is also undermining your therapy. And, although you don't want to admit it, it easily be contributing to your on-going string of F and D quality days. And in the long term, it could be the beginning of a slippery slope that ends with you throwing the PAP machine in the closet, but continuing the downward spiral in your daytime functioning.

Guest wrote: And, I'm NOT a physician. (and you can't even spell it correctly)

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Why are you hiding behind "guest"?

If you have truly been here for years, why are you not logged in?

1) You do not have an account and are actually new here.

2) You don't have an account, never have, and only come here sporadically.

3) You have an account, but you don't want anybody to know who you are.

I have a hard time considering advice and "facts" from somebody who is either too lazy to sign up or log in, or is deliberately hiding their username. I have no problem with new people checking out the forum before joining. But if you want people to believe you are experienced with the issues, you should consider logging in. I'm not willing to put much credibility in somebody who may be here to mess with us. I suspect others may be doubtful of you as well.

AHI15 wrote:

Guest wrote: Actually, about seven and a half years of XPAP experience (CPAP and APAP) and that many watching people on this forum screw up their sleep with ranges of pressures on APAPs.

APAP machines (through their sensors and various algorithms) interpret breathing patterns and events to try to decide whether they should increase, decrease or leave the pressure alone. Some people are sensitive to these machines changing pressures throughout the night.

Hmm, this is interesting.

Guest wrote:For an example, as a person goes into REM (or deeper stages of) sleep, their breathing patterns change. The APAP may unwisely interpret this as needing to increase pressure(s).......when this happens, the person may be jolted out of those much-needed sleep stages by the pressure bumps.

I've seen your predicament hundreds (if not thousands) of times on these forum pages.
Don't be naive and think a few pressure changes won't have an effect or that a "narrow" range can't mess up sleep.

Your other (big) problem has been that you haven't been utilizing software to actually see what's going on during the night. The summary numbers from the machine don't give much of a picture.

When you get desperate enough for some "good" sleep, try CPAP mode with a fixed pressure.
And, if you're fixated on your mask and are bothered by the air blowing into your nasal passages, try another type of mask (like a full face mask) that disburses the airflow over a wider area.

As I mentioned the SD card reader I need so I can use software is being shipped as we type.

So, you would recommend then to look at the pressures used for some time by the APAP, then make an educated guess at what constant pressure to set the machine to?

It also seems like you aren't a big fan of nasal pillows. I picked them as the first mask since they seemed to be the least intrusive. But I don't really know for sure and will soon set about deciding what next mask to try when I can get another.

For my nasal pillows, they don't bother me by blowing up my nose. The only things that bug me are:

1. laying on my side the side straps press against my cheek bones, despite being cushioned, and cause some discomfort.

2. The vent on the swiveling nose piece when laying on my side, blows against the pillow and makes noise or the wind can be felt on my hand or face.

Then I have to fuss about trying to get by blanket over the vent to diffuse the flow, and it becomes a big pain in the ass and I wouldn't be able to fall asleep were it not for the meds.

So there is work to be done to optimize this treatment.

Thanks for input.

That's correct. That's typically how APAPs have been used historically to come up with a fixed (CPAP) pressure. APAPs were originally designed and used for when sleep lab results were complicated by the patient having difficulties sleeping with all the wires and attachments.
As far as I know, Kaiser still does it this way. They send their prospects off with an APAP for a couple of weeks and then analyze the data and give them the cheapest non-data-capable machine set to a fixed pressure.

I just know that I couldn't use any type of a nasal mask. I've used full face masks since the beginning......and that included my sleep study (which was a Respironics Comfortfull mask). I've been using the ResMed Ultra Mirage Full Face mask since the first night on therapy. A couple of years into my therapy, I tried the Respironics Comfortfull 2 for about three nights (pure torture) and then a Mirage Quattro (OK, but not great) off and on for a short time, but always came back to my "old reliable" UMFF.

Another thing to keep in mind is the "bed pillows". The old standard fiberfill ones can really make for leaky masks and lousy sleep because they're soft and the head can sink into them, pushing the mask out of alignment. Years before I started this therapy, I started using a "Chiroflow" (also available under the "Mediflow" name) water-based pillow. It's somewhat firm (but still soft enough for good sleeping) and is adjustable by the amount of water that's put in it. Anyway, when I started this therapy, it worked great for this application.

Just keep in mind that sometimes you have to "think outside the box" with this therapy.
Get a variety of ideas from the other users and then do lots of soul searching about what might work best for YOU.

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zoocrewphoto wrote:

Guest wrote: And, I'm NOT a physician. (and you can't even spell it correctly)

.

Why are you hiding behind "guest"?

If you have truly been here for years, why are you not logged in?

1) You do not have an account and are actually new here.

2) You don't have an account, never have, and only come here sporadically.

3) You have an account, but you don't want anybody to know who you are.

I have a hard time considering advice and "facts" from somebody who is either too lazy to sign up or log in, or is deliberately hiding their username. I have no problem with new people checking out the forum before joining. But if you want people to believe you are experienced with the issues, you should consider logging in. I'm not willing to put much credibility in somebody who may be here to mess with us. I suspect others may be doubtful of you as well.

How about......

4) I don't feel like "contributing" as much as I used to. I got tired of answering the same questions over and over. There are many others who need to pick up the slack and contribute. And, there are many who do and have been. That's the best way to learn......answering others' questions.
It really doesn't make any difference if a person has a log-in name and avatar.......good advice is still "good" and bad advice is still "bad". I'm not sure that "credibility" comes with a user name. I know that there are a number of members of this board who have used multiple user names over the years.
Like some of the others you don't see much of anymore, I've been trying to wean myself from this forum and the addiction to helping people with this therapy. If you don't like my advice or suggestions, don't take them.

Best wishes,

Den (aka "Wulfman")

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Den,

I posted a response that seems to have disappeared.

I greatly appreciated your advice as one who has greatly struggled with cpap treatment and who greatly relates to some of AHIs struggles. I plan to check out your pillow recommendation.

Zoo crew, the attack on Den was totally unfair.

49er

49er wrote:Den,

I posted a response that seems to have disappeared.

I greatly appreciated your advice as one who has greatly struggled with cpap treatment and who greatly relates to some of AHIs struggles. I plan to check out your pillow recommendation.

Zoo crew, the attack on Den was totally unfair.

49er

That's OK. I understand where she's coming from. Some people just feel more comfortable talking to a "name".

It's always nice to hear that (or when) advice that is given, works out well for someone.
Not all advice works out well for everybody, but the idea is to empower the users to think for themselves and take control over THEIR therapy. This therapy can be quirky for many. The DMEs are typically not users and in my opinion, contribute to the horrible failure rate of this therapy.

In addition to the pillow I use, there are quite a few others that have been designed for (or work for some people with this) therapy. Or, in the case of "Carbonman" he just carved his bed pillow out of a big piece of foam (thinking out of the box again).

Hang in there.

Den

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49er wrote:Den,

I posted a response that seems to have disappeared.

I greatly appreciated your advice as one who has greatly struggled with cpap treatment and who greatly relates to some of AHIs struggles. I plan to check out your pillow recommendation.

Zoo crew, the attack on Den was totally unfair.

49er

You are welcome to that opinion. I believe it was a fair question. As a relative newbie, I am interested in this topic and I find some of his opinions to be questionable. I don't think it is responsible to be telling new xpap users that apap is not good. Sure, some people may have a harder time getting used to it, and cpap may be best for some. But apap is GREAT for a LOT of people. Why should I spend the whole night at 16 or 17, when I can use 11-13 most of the night? And how can I predict each night, how long I will sleep on my back? Some nights, my machine never goes above 15. Other nights, I might be in the 16s several times because of how I slept. My prescription of 11-17 works GREAT for me, and I have never noticed the change in pressures. Has GUEST ever used an apap machine? How would we know?

He has mentioned several years experience with cpap, but won't state his equipment, and he sounds like a doctor who dislikes apap. If a doctor, sleep tech, dme, or company representative is posting, I think they should be announcing that so that we know the bias. Since there are multiple "guests" posting, how are we to know the difference between them. I'm sorry, but to me, guest means new person. I don't automatically consider a "guest" to have years of experience that I should simply accept without any reason to.

And I didn't attack Den. I questioned "Guest". I have no way of knowing how Guest might be.

When somebody is giving advice to somebody else who is clearly struggling right now, I think it is only fair that he give some information such as how much experience he has, what types of machines he has used, and what pressure levels he has worked with. Otherwise, he could be a doctor against apap, a dentist who wants people to fail xpap treatment, or a troll who likes messing with people. When we come to this forum, we share our medical health with people. It is only fair that others participate in a similar manner.

Wulfman... wrote: That's OK. I understand where she's coming from. Some people just feel more comfortable talking to a "name".


.

Actually, it isn't about a name. When I read people's suggestions, I also look at how long they have been a member, what equipment they used, etc. Everybody has biases, and I think it helps to know what they are. It could be against a certain type of mask, and they will direct users to one type and away from another. Some people will say it in a general way. If this, then try that. Others will say it like it is an absolute.

I like to know where the advice is coming from before I try it and waste a night more of my health.

It's not my place to defend or discuss Den's reasons for posting as Guest and he wouldn't want me to, but just want to say that he has been my mentor and now friend for 4 years. I would have definitely given up the almost impossible task of being a caregiver if it weren't for Den's expert advice and patience almost on a daily basis. He never gave up on me and answered my cries for help within hours if not minutes. I still use his method of straight cpap for Mike's most comfortable therapy after I was finally convinced that changing pressures disturb his particular breathing patterns but use Apap in a narrow range every few months to make sure nothing much has changed. If nothing else, it also reminds me that straight pressure is still best for Mike although I fought Den all the way wanting to use Apap just because it was there! I wouldn't be surprised if I'm the one who finally wore him out and he's now joined RestedGal and the many other old timers for a much deserved rest and have passed the torch to our present and very able experts. I hope they still lurk here once in awhile. Now we have to keep our fingers crossed that Pugsy stays with us for a long time!