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Cpap & Autopap NOT working - getting desperate
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robysue Offline
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Post: #31
RE: Cpap & Autopap NOT working - getting desperate
Easy question first:
(11-05-2013 08:44 PM)Thecleanser Wrote:  I notice on the bad days FLOW rate is at the top and on the good days its no where to be seen....?
The S9 overwrites the FLOW rate data on the SD card every seven days. If you want all of your FLOW rate data, you have to download at least once every seven days. My guess is that you don't download the data every day, and that the data from the good days was NOT downloaded until they were over seven days old and the FLOW data had been overwritten.

Now for the hard question:
Quote:Okay Im posting a few screen shots here the first 2 days Oct 15 and 16 were good days, days i'd like to have all the time - oct 24 and Nov 1st are days I didnt feel good at all. What am I missing here on these reports?
I'm not sure you are missing anything. The data from the good days pretty much looks a lot like the data from the bad days. Which points to a different cause of your on-going problems.

But let's try to micro-analyze the data you've posted to see if there's anything in it that might give some insight into what might be different on the good days versus the bad days. We'll start by looking at some standard things that can affect the efficacy of CPAP therapy:

Leaks
Large leaks can allow events to occur because the machine can have difficulty maintaining pressure. Large leaks can also make it difficult for the machine to accurately record data.

But you summary leak data on all four days indicates your 95% leak rate is well below the 24 L/min red line ResMed uses to define "Large Leaks." Your max leaks are likely spikes caused by momentarily removing the mask or moving it around, perhaps to scratch your nose. (We can see a very short lived spike in leak graph on 10/16 that is likely you scratching your nose, for example.) So leaks are probably not a significant factor in explaining your good days and bad days. (It would be nice to see the leak lines for 10/24 and 11/1 just to be sure.)


Ramp abuse
During the "ramp" period, the pressure is at a level that is known to be less than what is needed to properly splint the patient's airway. But the idea is that the lower pressure will allow the patient to get to sleep easier, and once the patient is asleep and the pressure has reached the full therapeutic level, things will be OK. Patients can get in trouble when the starting ramp pressure is way, way too low, the ramp period is far longer than it takes the patient to fall asleep AND when the patient repeatedly hits the ramp button every time they wake up. The combination of these things allows the patient to spend too much time sleeping with machine providing inadequate pressure to splint the airway open, and that allows way too many events to occur. Complicating matters further, the S9 does NOT record events during the ramp period. And the S9 does not speed up the ramp period if you fall asleep and have a ton of events.

You have the ramp set to a 45 minute period. But you're only ramping from 4cm to 5cm since your pressure range is 5--20cm. Moreover, on the four days of data you post, the only time you press the ramp button after the beginning of the night is on 10/15 (a "good day"). So if these four nights are typical, we can safely assume that ramp abuse is NOT your problem.. In other words, you're not experiencing gobs of unrecorded events throughout the night because of the ramp being on for extended periods throughout the night.


Clustering of events; possible issues with pressure settings?
There are some clusters of events that are still happening---on both the good nights and the bad nights. How significant of a problem this is is something you may want to try to address with your sleep doc. (Yes, I am aware that you feel as though you're not getting anywhere with him/her.). The thing is, the worst of your clusters is on one of the good days. That may mean that the clinical significance of the clustering is minimal---i.e. the overall number of events is low enough where OSA is no longer an issue.

But still, there are some clusters of OAs and Hs. (The number of CAs is insignificant.) And the timing of those clusters of OAs and Hs indicates they just might be REM-related. Any documentation about whether your OSA is much worse in REM than non-REM?

And your current pressure range (5-20) has a min pressure setting that is well below your original titrated pressure. And it's below a number of pressure ranges that worked for you---at least for a small amount of time. Hence it may be that you are now using a pressure range that on a bad night for REM-related OSA just has a starting pressure setting that is too low and the machine is spending too much time playing catch up.

So if you absolutely feel you must do some more dial wingin' then it may be useful to slowly increase the min pressure setting. Bump it up to 6 and leave it there for a week or two and look at the data. If there's no improvement in the clustering and no improvement in how you're feeling, bump it up to 7 and leave it there for a week or two and look at the data. And so on and so forth. The idea, however, is that you need to both be patient (leave the new setting in place for at least 7-14 days) AND you need to look at the data before making any decision about what to do next.


Other things
We still don't know how restless you are during the night. My guess is that you are dealing with other sleep issues and other health issues. As I've said in the past, your description of the headaches indicates that they are an independent cause of how bad you are feeling. And until you figure out what is causing the headaches and an effective way of treating them, you're not going feel any better during the day no matter HOW well you're sleeping at night. (And the Advil is NOT effectively treating your headaches and it IS probably contributing to your problems.)
11-06-2013 02:02 PM
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Thecleanser Offline

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Post: #32
RE: Cpap & Autopap NOT working - getting desperate
(11-06-2013 02:02 PM)robysue Wrote:  Easy question first:
(11-05-2013 08:44 PM)Thecleanser Wrote:  I notice on the bad days FLOW rate is at the top and on the good days its no where to be seen....?
The S9 overwrites the FLOW rate data on the SD card every seven days. If you want all of your FLOW rate data, you have to download at least once every seven days. My guess is that you don't download the data every day, and that the data from the good days was NOT downloaded until they were over seven days old and the FLOW data had been overwritten.

Now for the hard question:
Quote:Okay Im posting a few screen shots here the first 2 days Oct 15 and 16 were good days, days i'd like to have all the time - oct 24 and Nov 1st are days I didnt feel good at all. What am I missing here on these reports?
I'm not sure you are missing anything. The data from the good days pretty much looks a lot like the data from the bad days. Which points to a different cause of your on-going problems.

But let's try to micro-analyze the data you've posted to see if there's anything in it that might give some insight into what might be different on the good days versus the bad days. We'll start by looking at some standard things that can affect the efficacy of CPAP therapy:

Leaks
Large leaks can allow events to occur because the machine can have difficulty maintaining pressure. Large leaks can also make it difficult for the machine to accurately record data.

But you summary leak data on all four days indicates your 95% leak rate is well below the 24 L/min red line ResMed uses to define "Large Leaks." Your max leaks are likely spikes caused by momentarily removing the mask or moving it around, perhaps to scratch your nose. (We can see a very short lived spike in leak graph on 10/16 that is likely you scratching your nose, for example.) So leaks are probably not a significant factor in explaining your good days and bad days. (It would be nice to see the leak lines for 10/24 and 11/1 just to be sure.)


Ramp abuse
During the "ramp" period, the pressure is at a level that is known to be less than what is needed to properly splint the patient's airway. But the idea is that the lower pressure will allow the patient to get to sleep easier, and once the patient is asleep and the pressure has reached the full therapeutic level, things will be OK. Patients can get in trouble when the starting ramp pressure is way, way too low, the ramp period is far longer than it takes the patient to fall asleep AND when the patient repeatedly hits the ramp button every time they wake up. The combination of these things allows the patient to spend too much time sleeping with machine providing inadequate pressure to splint the airway open, and that allows way too many events to occur. Complicating matters further, the S9 does NOT record events during the ramp period. And the S9 does not speed up the ramp period if you fall asleep and have a ton of events.

You have the ramp set to a 45 minute period. But you're only ramping from 4cm to 5cm since your pressure range is 5--20cm. Moreover, on the four days of data you post, the only time you press the ramp button after the beginning of the night is on 10/15 (a "good day"). So if these four nights are typical, we can safely assume that ramp abuse is NOT your problem.. In other words, you're not experiencing gobs of unrecorded events throughout the night because of the ramp being on for extended periods throughout the night.


Clustering of events; possible issues with pressure settings?
There are some clusters of events that are still happening---on both the good nights and the bad nights. How significant of a problem this is is something you may want to try to address with your sleep doc. (Yes, I am aware that you feel as though you're not getting anywhere with him/her.). The thing is, the worst of your clusters is on one of the good days. That may mean that the clinical significance of the clustering is minimal---i.e. the overall number of events is low enough where OSA is no longer an issue.

But still, there are some clusters of OAs and Hs. (The number of CAs is insignificant.) And the timing of those clusters of OAs and Hs indicates they just might be REM-related. Any documentation about whether your OSA is much worse in REM than non-REM?

And your current pressure range (5-20) has a min pressure setting that is well below your original titrated pressure. And it's below a number of pressure ranges that worked for you---at least for a small amount of time. Hence it may be that you are now using a pressure range that on a bad night for REM-related OSA just has a starting pressure setting that is too low and the machine is spending too much time playing catch up.

So if you absolutely feel you must do some more dial wingin' then it may be useful to slowly increase the min pressure setting. Bump it up to 6 and leave it there for a week or two and look at the data. If there's no improvement in the clustering and no improvement in how you're feeling, bump it up to 7 and leave it there for a week or two and look at the data. And so on and so forth. The idea, however, is that you need to both be patient (leave the new setting in place for at least 7-14 days) AND you need to look at the data before making any decision about what to do next.


Other things
We still don't know how restless you are during the night. My guess is that you are dealing with other sleep issues and other health issues. As I've said in the past, your description of the headaches indicates that they are an independent cause of how bad you are feeling. And until you figure out what is causing the headaches and an effective way of treating them, you're not going feel any better during the day no matter HOW well you're sleeping at night. (And the Advil is NOT effectively treating your headaches and it IS probably contributing to your problems.)

Thanks for taking the time to look at the data and to give your input. I now know why the flow rate is some times there or not.
The sharp spike in leaks some times is me scratching my nose - other times the hose just pops off the mask and it takes a few seconds for me to put it back on.

That is truly an excellent explanation of how the ramp can actually work against some one. I was very dependent on the ramp while being on regular CPAP and a pressure of 16 - In my opinion, without the ramp, my brain would would get flooded with oxygen causing me to not be able to sleep - it would actually wake me up. I will turn the ramp off now that I'm on APAP
Prior to PAPing I had some really restless nights - literally just tossing and turning all night - I had to go down to the couch to get some rest - Not knowing at the time why I would get a better night sleep on the couch, but it was easier for me to sleep on my side while on the couch there for lessening the apneas. Generally speaking things have gotten quite calm for me in bed now that I'm PAPing.
So I used my my shirt with a perrier bottle sewed into the back of it again for sleeping last night to prevent me from laying on my back - looks to me like this is definitely making an improvement in how I feel the next day. Today would be classified as one of my good days - good day to me is not starting burning out at 9 or 10 AM - I did start to get very tired around 5 pm and its only gotten worse to now as I type this.
I fear my sleep apnea is so severe, that even the machine cannot defeat it.

Your so sure that there are other factors at play here in regards to the head aches - I too was very sure that some thing was wrong with me along with the sleep apnea - I got glasses, mouth gaurd,blood pressure pills, seen a neurologist gotr an MRI. Seen the jaw surgeon. My GP though he was quite smart every time he found a problem with me, the need for glasses , blood pressure pills, he was sure my head aches would be gone. None of it helped me.

Like I said today was a good day - around 4 or 5 pm when I started to get tired and feel a slight headache - I took a 200 mg advil and yes it perked me up for about 45 mnts. And then back down I went like so many times before . I was going to take another advil but chose not to. Because like so many times before the second advil doesn't work. It doesn't work cause I'm just plain tired and fatigued - so fatigued that my head actually hurts.
Even now as I type this I'm extremely tired and you could even say my head hurts - I can take all the advils I want right now they just wont do any thing cause I just plain tired and fatigued - I think the reason they seem to help out when taken earlier in the day is cause I'm not quite that tired yet.
Looking back I've had this problem for a very long time just not as severe as now, but I think I seemed to have hit a tipping point when my body weight went over 260 Lbs 3 years back.( I'm now 285 lbs) Being 6'2 and a heavy set build to my body I'm told I should be around the 200 Lbs .
I am going to listen to the first sleep doctors advise and enroll in a weight loss program.
11-06-2013 09:07 PM
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robysue Offline
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Post: #33
RE: Cpap & Autopap NOT working - getting desperate
(11-06-2013 09:07 PM)Thecleanser Wrote:  Thanks for taking the time to look at the data and to give your input.
You're welcome! Wink

Quote:The sharp spike in leaks some times is me scratching my nose - other times the hose just pops off the mask and it takes a few seconds for me to put it back on.
'Zactly what I thought. Leaks are NOT your problem.

Quote:Prior to PAPing I had some really restless nights - literally just tossing and turning all night - I had to go down to the couch to get some rest - Not knowing at the time why I would get a better night sleep on the couch, but it was easier for me to sleep on my side while on the couch there for lessening the apneas.
This is not as unusual as you might think. People don't sleep the same on couches as they do in beds---a couch just doesn't provide the same support, and that means we'll move around into a different position. In your case, that meant you moved onto your side.


Quote:I fear my sleep apnea is so severe, that even the machine cannot defeat it.
The data from your APAP shows that it's doing a pretty good job at 5-20 of managing your OSA. Your AHI is consistently below 5. Yeah, there are some residual clusters of OAs and Hs, but they're not too terrible AND they're not every night. (And their affect on how you feel the next morning is inconsistent. In the four nights of data you posted, the worst cluster was on a night that preceded a good day.)
11-07-2013 01:20 AM
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robysue Offline
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Post: #34
RE: Cpap & Autopap NOT working - getting desperate
Thecleanser Wrote:Your so sure that there are other factors at play here in regards to the head aches - I too was very sure that some thing was wrong with me along with the sleep apnea - I got glasses, mouth gaurd,blood pressure pills, seen a neurologist gotr an MRI. Seen the jaw surgeon. My GP though he was quite smart every time he found a problem with me, the need for glasses , blood pressure pills, he was sure my head aches would be gone. None of it helped me.
Headaches are easy to diagnose and very, very difficult to effectively treat. More on this in a bit.

You also write:
Quote:Like I said today was a good day - around 4 or 5 pm when I started to get tired and feel a slight headache - I took a 200 mg advil and yes it perked me up for about 45 mnts. And then back down I went like so many times before . I was going to take another advil but chose not to. Because like so many times before the second advil doesn't work. It doesn't work cause I'm just plain tired and fatigued - so fatigued that my head actually hurts.
and
Quote:Even now as I type this I'm extremely tired and you could even say my head hurts - I can take all the advils I want right now they just wont do any thing cause I just plain tired and fatigued - I think the reason they seem to help out when taken earlier in the day is cause I'm not quite that tired yet.
These are symptoms of overuse of OTC pain relievers . When you use too much advil (or aspirin or tylenol), they simply become ineffective in pattern like you describe. The first one will work---for a while, but the second (or third or fourth one) will provide no relief at all.

More importantly, when you continue to overuse OTC pain relievers for headache pain, they can actually trigger headaches that are called rebound headaches. A rebound headache is a essentially a headache that starts just as soon as the pain reliever starts to wear off. And sometimes the rebound headache can be even more painful than the original headache was.

When rebound headaches get out of control, a rebound headache can actually start when you fail to take an OTC pain reliever "on time". In other words, if you have been taking an advil shortly after breakfast every day for a mild-to-moderate headache that starts when you are eating breakfast, the first day you don't have a headache at breakfast and you don't take the advil, guess what can happen an hour or so after the time you've been taking that daily advil? A headache can start up---for no better reason than you didn't take the advil. That's what a rebound headache is. And here's the real kicker: The rebound headache can be far more painful than the mild-to-moderate headaches you've been taking the advils for all week long.



Quote:Looking back I've had this problem for a very long time just not as severe as now, but I think I seemed to have hit a tipping point when my body weight went over 260 Lbs 3 years back.( I'm now 285 lbs) Being 6'2 and a heavy set build to my body I'm told I should be around the 200 Lbs .
I am going to listen to the first sleep doctors advise and enroll in a weight loss program.
It's good you're planning on enrolling in a weight loss program. At the very least it should give you more energy and make you feel better. At the very best, it may directly help reduce the severity of the apnea, perhaps by quite a bit.

But I want to conclude by telling you a bit about my own long history with chronic headache pain. My history is not atypical, by the way. Many people with chronic headache pain find that it takes a real effort to find a doctor who is patient enough to treat headache pain. Because treating headache pain usually involves a lot of trial and error.

I know a lot about headaches: I've had chronic headaches my entire life. I get tension headaches, migraine headaches (both mild chronic ones and classic episodic ones with auras), sinus headaches, tmj headaches, "I forgot to eat" headaches, "I ate too much" headaches, "I stayed up too late" headaches, "I sleep too" late headaches, "I'm getting sick with the flu" (or a headcold) headaches, and so on and so forth ... I get double and triple whammies headaches: For example, I can tell hubby that there's both a tmj headache, a tension headache, and a "I think I'm coming down with the flu" headache and they all hurt in different places and different ways at the same time.

And almost all of my headaches (except for the classic episodic migraines with aura) are mild-to-moderate in terms of the level of pain. The thing is, they have always been present in my life. As in: Almost every day of my entire life I've had at least a mild headache most of the day, going at least as far back as when I was 10 years old. (I'm now 55.)

And until 2010, I and my docs basically said, "They're not that painful, even though I get them almost every single day. I'll just live with them."

But in Fall 2010, with the start of PAPing, all kinds of things just got out of control, and one of those things was my chronic headaches.

And since January 2011 I've had numerous doctor's appointments and spent much more time and effort in getting my multiple types of chronic headaches under control so that I am NOT in mild-to-moderate, but chronic daily pain from the headaches every single day.

And the effort to rein in the headaches is largely worth it: Because for a period between October 2011 and December 2012 I was basically headache free---as in almost every day totally headache free for the first time in my whole life. And I could not believe how big of a difference being pain free made in terms of the quality of my day-to-day life.

But the tension headaches and the TMJ headaches started to return in December 2012 and the migraines returned this summer. So I and my headache doc and TMJ dentist have been hard at work at at reining them back under control. It's a huge battle. But I'm finally beginning to make some real progress. And I'm looking forward to being pain free once again.

To give you some idea of just how much is involved in controlling my chronic headaches:

1) TMJ headaches. These are relatively easily managed through night guards. But since starting CPAP, I have developed a tendency to chew through night guards with the frequency that a rabbit eats carrots. The last 6 months my TMJ dentist has been working pretty closely with me in order to figure out how to design a guard that will last longer than 3 months. We think the last one may just work---it's now 6 weeks old and still in remarkably good shape.

2) Tension headaches. Trigger point injections in my back every 4-6 weeks for the last year or so. The trigger points are extremely small, tight, intense muscle knots that cause tension headaches. I also have been taking a muscle relaxant at night to help keep those back muscles relaxed. Slowly the back muscles are relaxing and the number of trigger points is going down. But I'm a long way from not needing them.

3) Migraines. For two years, a vitamin regime prescribed by the neurologist was enough to keep them under control, with a triptan prescribed as a "rescue" medicine for when I felt a genuine killer migraine coming on. (Instructions on the use of the triptan: Don't use it more than once or twice a week.) But this started to fray at the seams this fall and the migraneous vertigo returned. The vertigo is not painful, but it is totally disorienting and it makes it very hard to function. (I'd rather have pain than veritgo, quite frankly.) So it's back to trialing prophylactics until we find one that works (which is easy) and that I can tolerate (which is hard).

4) Sinus headaches. In allergy season, I need to use Flonase and sometimes Zyrtec as well as Flonase not only to breath, but also to keep the sinus headache under control. And allergy season runs from early spring (tree pollen) through summer (grass and weed pollen) through fall (ragweed pollen). I love the first hard freeze and the end of the growing season ...

5) Life-style headaches. I still have to remind myself that I need to eat on time (or I'll get a food headache). Caffeine gives me a headache and I'm largely caffeine free, but sometimes I just can't resist an iced tea at lunch or a real coke. Exercise too hard? I get ah headache. Read too much? I'll get a headache (could be eye strain or neck strain or both). Too much tv? I'll get a headache. Stay up too late? I'll get a headache. Sleep in too late? I'll get a headache. My body craves a regular schedule that my spirit loathes ...

As you can see: Managing my headaches is at least as big of a task as managing my OSA via CPAP. In many ways, it's a larger taks than managing the OSA. But until my headaches are firmly under control again, I will NOT feel at my best. And right now, one of the big symptoms is that I'm tired and in (headache) pain much of the day several days every week. And days when I'm in pain lead to nights where I don't sleep well, which make the next day more problematic ... So getting my headaches under control is a top priority.

So in addition to enrolling in that weight loss program, please ask for a referral to a doc who specializes in treating headache pain. Because you've got some kind of chronic headache pain going on. And while it's probably nothing serious medically speaking, it is seriously affecting the quality of your life. And because it's adversely affecting the quality of your life and the OTC pain relievers are no longer effective in treating it, it's time to get some professional advice and help in reining in those headaches.
11-07-2013 02:11 AM
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RonWessels Offline

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Post: #35
RE: Cpap & Autopap NOT working - getting desperate
One other possibility with regards to your headaches. I note that you are taking BP medication, as am I. When I first started and my doctor and I were trying to find the best drug and dosage for treatment, I ended up trying one BP med (sadly, I forget which one) that seemed to help, but "coincidentally" I ended up getting chronic ear-ache and headaches. I was just about to schedule another Dr's visit for a possible ear infection (it was always the right ear) when my wife noticed that a rare side-effect of my new BP med was ear-ache and headache. I tried not taking that pill over the weekend, and by the time my Monday appointment came around, the ear-ache and headache were gone.

I'm now on different medication, and it hasn't recurred.
11-07-2013 05:54 PM
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Thecleanser Offline

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Post: #36
RE: Cpap & Autopap NOT working - getting desperate
[/quote]The data from your APAP shows that it's doing a pretty good job at 5-20 of managing your OSA. Your AHI is consistently below 5. Yeah, there are some residual clusters of OAs and Hs, but they're not too terrible AND they're not every night. (And their affect on how you feel the next morning is inconsistent. In the four nights of data you posted, the worst cluster was on a night that preceded a good day.)
[/quote]

Yes according to the data from the machine I should not be so extremely tired every day, yet I am - I can swear that I am more tired these days on PAP than I was 2 years ago with out it - the only thing it seems to be doing is allowing me to sleep with out tossing and turning ALL NIGHT and I get a few good hours early in the day. Some thing is missing here I just need to pin point it. My oximeter still has not arrived yet. The APAP can show what it wants, but it all boils down to what the oxygen saturation levels are at. Hopefully that may shed some light on the situation.

[/quote]So in addition to enrolling in that weight loss program, please ask for a referral to a doc who specializes in treating headache pain. Because you've got some kind of chronic headache pain going on. And while it's probably nothing serious medically speaking, it is seriously affecting the quality of your life. And because it's adversely affecting the quality of your life and the OTC pain relievers are no longer effective in treating it, it's time to get some professional advice and help in reining in those headaches.[/quote]

I will book an appointment with the neurologist again - it will take some time to get in and see him - I will discuss with him all you have mentioned in regards to headaches, OTC pain relievers, rebound head aches etc.... Which I thank you for the fountain of info I might add. In the time being I need to try and figure out whats going on with this PAPing - hope fully I can shed some pounds to lessen the severity of the OSA and the overall pressure of the of the APAP machine. I'm sure I will feel much better.

I will check back in when new data is available from oximeter to cross reference with Apap data.
(This post was last modified: 11-07-2013 08:44 PM by Thecleanser.)
11-07-2013 08:35 PM
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Thecleanser Offline

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Post: #37
RE: Cpap & Autopap NOT working - getting desperate
(11-07-2013 05:54 PM)RonWessels Wrote:  One other possibility with regards to your headaches. I note that you are taking BP medication, as am I. When I first started and my doctor and I were trying to find the best drug and dosage for treatment, I ended up trying one BP med (sadly, I forget which one) that seemed to help, but "coincidentally" I ended up getting chronic ear-ache and headaches. I was just about to schedule another Dr's visit for a possible ear infection (it was always the right ear) when my wife noticed that a rare side-effect of my new BP med was ear-ache and headache. I tried not taking that pill over the weekend, and by the time my Monday appointment came around, the ear-ache and headache were gone.

I'm now on different medication, and it hasn't recurred.

I thank you for your interest in helping me and sharing your experience.
I though long ago that the BP pills might have been the culprit. I switched brands and even stopped taking the pills altogether for up to 5 weeks with no luck .
11-07-2013 08:42 PM
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Thecleanser Offline

Members

Posts: 18
Joined: Oct 2013

Machine: Resmed S9 VPAP
Mask Type: Full face mask
Mask Make & Model: resmed- mirrage quattro
Humidifier: yes
CPAP Pressure: in progress
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Brampton, Ontario, CAN

Post: #38
RE: Cpap & Autopap NOT working - getting desperate
Okay guys I'm back hope every one is well as its been a tuff run for me since I last posted here. Im back with some very good news.
Just touching off where we left off- I was desperate to figure out what exactly was going on with me as know some thing was not right with the cpap and autopap treatment I was using.
So I went in for the titration last October as the new doctor i started seeing for some reason found all the information from the previous sleep study and titration (from the previous doctor) useless and insisted he could do nothing to help me until a new titration was done - this after I literally begged him out of desperation to help me as I was REALLY SUFFERING with the way I felt all day every day ( this tired head achy feeling which never ended day after day which at this point was really starting to interfere with my daily life - I was very close to resigning from my job and going on welfare and prolly loose my house in the process). It was just heart braking when each time I went in to see him and told him no matter what setting he puts on that machine its just not going to help as ive tried them all and still he just send me away telling all will be better when the titration is done.
So I go in for the titration and see him a week later and he prescribes me a setting of 5 -20 and say go home and try that for 3 weeks and come back to me. I said that's it? That all your going to do? This isn't going to work I said to him - lets fast forward 3 weeks when I come back and tell you this didn't work what's your next plan of action? He mentions some thing again about modafonil, but insist I leave and try out the new RX. So I left all pissed off - I just suffered all these month waiting for the 2 years to pass so insurance would cover the titration and friging nothing .
So I come back in 3 weeks and tell him that there's no improvement what so ever. He say ok we need another sleep study. At that point I called this f**kin clown out on his BS- I said to guy I came here for you to help me, I does not appear that you can.... infact the only thing you seem to want to do here is bill OHIP (my insurance) as much as you can before your done with me and prescribe me modafanil.
I left there so mad and feeling hopeless.
So I joined a weight loss program.
Immediately I felt better ( during the days only - but I still burned out rather quickly come late afternoon or early evening) but unfortunately it lasted about 2 months and shortly after Christmas I was going back to the way I felt again keep in mind I have not gained any of my weight back.

So now months of suffering again I send an email to the last guy I bought my S9 Auto machine from who said to ask him for help if I needed it as his back ground was in respirology.
I explained the situation and he in turn had explained to me that what was likely happening here was that I needed a bilevel machine to properly exhale and be able to blow off the carbon dioxide which was accumulating in my blood stream every night causing this tired head achy feeling. I was suffering from HYEPERCAPNIA -He had explained to me that cpap and apap where abnormal to the human body as your body basically needed to fight to exhale properly and despite the machine reports saying everything was fine and dandy it was not. I thought wow this makes sense and is most likely what's going on.

So I make an appointment with the original doctor I first seen more that 2 years ago and try to explain the situation to him - he says that not what's going on your just tired and need modafinil - In fact when I pressed him for the bilevel rx he got upset with me and wouldn't hear it - He sent me home with a new rx setting for the machine of 7- 14 and said for me to go to my family doctor and push for every possible test available to check for tiredness and fatigue and then come back in a month to see him. What a waste these guys are clearly clue less.

So I left there thinking holy sh*t I really have an uphill battle here - these doctors are either too stupid to help me or they just plain don't want to help me.

So I email my friend online and tell him I really need to get my hands on a bilevel machine - my current options were to try and fake a RX to buy one or knock off a cpap supply store - at this point I'm really desperate and my life is falling apart as it is - what do I have to loose.

Luckily my friend arranges and makes it possible for me to purchase a resmed S9 VPAP machine. Let me tell you he hit the nail right on the head with his theory of needing to blow off the carbon dioxide - that bilevel machine instantly changed the way I feel - It was the carbon dioxide build up that gave me that headachy feeling all day combined with the tiredness that was just literally killing me day in and out.

So I'm 2 weeks into the new machine now and will admit that yes I am still tired - Not nearly as bad as before - but the symptoms of HYPERCAPNIA are gone. I am functional again.

My S9 Autoset was running at 95% of the time just under 11 cmH20 - I was told to set the minimum Epap to at least that on the Vpap with a PS 4 cmh20. I decided to open up the machine and let it do what it wanted.
I set Min Epap to 4 and max Ipap to 20 and left PS setting at 4 for the first couple days - The machine hung at around 8-12 most of the time and thought it was doing a great job. My body or brain to be exact didnt think so - I started burning out around mid after noon and it just carried through till bed time.
On the bright side of things I was functional at work again and had a clear head for most of the day.

I then increased min Epap to 11 and max Ipap to 20 and left PS at 4 but found that by doing this I had effectively taken the machine out of auto cause it just stayed most of the night at 11 and 15 - although ive had some better days I'm still getting tired mid afternoon or early evening.

Im going to have to keep making adjustments until hopefully I can finally manage this serious OSA condition of mine.
For now I will keep going up with the pressure.

The unfortunate thing here is that this is most likely not an isolated circumstance to just my situation but probably many others who will never know why they feel the way they do. I've seen so many post saying "cpap making things worse".

How is it that the trained specialists (doctors if you want to call them that) who treat this problem are unaware of potential side effects of the treatment and an anesthesiologist tells me what wrong instantly.

And you ROBYSUE - this post should go a long way to possibly explain some of your head aches as well.

Every ones body works differently - high metabolic rates in ones body will produce more Co2 than in another persons body - food consumption and daily activities will all affect the amount of Co2 produced and needed to be blown off. This is why some days were far worse than others for me with no apparent explanation. I am a big guy 6'2 and now 255lbs very healthy with a high metabolic rate which is why I suffered greatly - my body produced a lot more Co2 than then some one who is 180 lbs 5'8. If I went to bed with the smallest amount of alcohol I would feel so much worse the next day - not because I'm hung over but because it was cause more apnea which in turn would make the pressure on the auto set go up causing me to exhale even less. It all makes sense now the way I felt since starting CPAP. It also makes perfect sense now why I felt better while on the weight loss program - less food intake equals less metabolic function. Its unfortunate that I took so many OTC pain relievers for nothing for the last 2 and a half years.

Hope fully this post can at least help some one else who is needlessly suffering.
05-12-2014 07:45 PM
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Gabby Offline

Preferred Members-2

Posts: 664
Joined: Dec 2013

Machine: ResMed AirSense 10 AutoSet For Her
Mask Type: Nasal pillows
Mask Make & Model: Philips Nuance Nasal Mask
Humidifier: ResMed AirSense 10 For Her
CPAP Pressure: 8-14
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #39
RE: Cpap & Autopap NOT working - getting desperate
I have just read through your story and it is great that you finally have a positive outcome.
Well done to you for not giving up, I take my hat off to you.
How on earth did you not lose your cool with those useless Doctors? It makes you wonder about some of them doesn't it?
Thank goodness for your friend.
It is so good you are on the road to recovery and hopefully you will be able to help others with your story.

Sleep Tight...
Gabby
05-12-2014 11:24 PM
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ShelaghDB Offline

Members-b

Posts: 267
Joined: Sep 2013

Machine: S9 Auto-Set +Resmed H5i
Mask Type: Full face mask
Mask Make & Model: Quattro Air FF Mask
Humidifier: resmed H5i
CPAP Pressure: 13
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Female
Location: Toronto, Ontario, Canada

Post: #40
RE: Cpap & Autopap NOT working - getting desperate
Quote:I lucked out and got a brand new S9 autoset for 400 bucks (don't ask...)

I could KICK myself. I saw a brand new S9 Autoset on sale on Kijij for the GTA about 2 months ago for $500. I hesitated, went back and it was sold. Maybe to you? LOL


GTA in Canadian terms is the Greater Toronto Area, where this poster lives, as do I


Quote:Another is to purchase an advanced machine that treats complex sleep apnea - I seem to be having quite a few hypopneas - seems to be 50/50 with OA's - Also the higher the pressure the more i seem to get the head aches.

Any help would be great - sorry for the novel.


I am just reading the thread in full now but noticed that comment. IF YOU DO end up selling it, please contact me as I would take it off of your hands immediately.
If there is any chance to that let me know and i will PM you my number.

I realize however by the time i get to the end of this thread you may be using the auto set after all and be fine so if so, my comments can be ignored
(This post was last modified: 05-13-2014 06:04 PM by ShelaghDB.)
05-13-2014 05:58 PM
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