Cpap & Autopap NOT working - getting desperate

[Thecleanser]

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

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

If you stay vigilant on kijiji you will find one - I just lucked out with finding a brand new machine at the price I did. I have to keep in mind that I do not have a RX for bilevel machine and should some thing happen to the one I have, I will need some thing as back up until I can get my hands on another machine. The auto set is not ideal for me but better than nothing. If anything I could cannibalize it for parts should a motor or some thing go in the vpap.
It seems to me that the doctors here in canada are not so quick to prescribe anything above a plain cpap because of our universal health care system. In our case OHIP (ontario health insurance plan) would ask questions as to why we were prescribed the machine if we were to get some of the cost subsidized when the sleep study did not warrant it.
Another suggestion I will make to you is to skip auto altogether and go straight for a bilevel or bilevel auto.
Although I was suffering from hypercapnia I was also very tired as well. Ive been nearly 3 weeks with the Resmed VPAP and it has shown me that the Resmed Autoset's algorithms in auto were clearly not taking care of my tiredness despite showing very low AHI's. In fact the Resmed VPAP Auto machine with open parameters in auto (aside from PS of 4 cmh20) was not taking care of me when it thought it was doing its job - As i previously posted it ended up on its own hanging out around 8 epap and 12 ipap when its only now that after I've jacked up the base pressure- epap to 12 and ipap to 16 that I'm starting to feel better - Even though I set min epap to 12 with a PS of 4 ( thats the constant difference between epap and ipap) and a max Ipap of now 25 the machine just hangs out at 12 and 16 - what ive done is effectively taken it out of auto even though its in auto by making the min epap higher that it thinks is needed if this make any sense to you.
If its comfort your looking for then bilevel is the way to go - a plain auto cpap may not work out for you the way you expect or would hope.

Hope this helps

[Daveb1972]

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:

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

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.

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.

Have you tried Botox injections? Cured (mostly) my wifes headaches. Its fairly new proceedure, (Dr. Keith Edwards in Schenectady NY is using the treatment at Empire Neurology).

[jaycee]

One of the criteria for insurance to pay for BiPAP is for the patient to "fail" on CPAP. In the sleep lab, if the AHI doesn't get better with CPAP, and you meed the criteria, they switch you to BiPAP.

Often times though it means starting out on CPAP, not getting better, going back into the sleep lab and getting a retitration done and switching to BiPAP.

Your doctor may order a Auto BiPAP trial where they put you in auto bipap for a 2-3 week trial to see how you do on that.

Good for you that you didn't give up. A LOT of patients with severe sleep apnea don't follow through with therapy as the original ordered CPAP doesn't improve symptoms much at all.

[CHanlon]

Another suggestion I will make to you is to skip auto altogether and go straight for a bilevel or bilevel auto.

If its comfort your looking for then bilevel is the way to go - a plain auto cpap may not work out for you the way you expect or would hope.

Hope this helps

I wouldn't go quite that far. There are any number of us here that do just fine on an autoset... Especially when it's set up right.

I know what you mean about doctors in Ontario, though. I couldn't convince mine to prescribe an s9 autoset for the 3 months I tried. When I said I couldn't adjust to the 19 pressure that 3 weeks on an apap suggested I needed, his answer was to set it to 16. Then I finally got my titration study... And he told me 14! Keep in mind, my first study showed 76 events per hour... At 14 I couldn't even breathe. But that's just because he "couldn't justify an autoset to Ohip." I had to show pressure variance of 5 or more. Um... 19 minus 14...? I finally told him to give me the prescription and I'd buy it myself. Found out from the RT that "oh, he will never prescribe apap, he doesn't believe in it." In the same period, 2 family members went to a different doctor, and walked out with apap machines.

[ShelaghDB]

Another suggestion I will make to you is to skip auto altogether and go straight for a bilevel or bilevel auto.

If its comfort your looking for then bilevel is the way to go - a plain auto cpap may not work out for you the way you expect or would hope.

Hope this helps

I wouldn't go quite that far. There are any number of us here that do just fine on an autoset... Especially when it's set up right.

I know what you mean about doctors in Ontario, though. I couldn't convince mine to prescribe an s9 autoset for the 3 months I tried. When I said I couldn't adjust to the 19 pressure that 3 weeks on an apap suggested I needed, his answer was to set it to 16. Then I finally got my titration study... And he told me 14! Keep in mind, my first study showed 76 events per hour... At 14 I couldn't even breathe. But that's just because he "couldn't justify an autoset to Ohip." I had to show pressure variance of 5 or more. Um... 19 minus 14...? I finally told him to give me the prescription and I'd buy it myself. Found out from the RT that "oh, he will never prescribe apap, he doesn't believe in it." In the same period, 2 family members went to a different doctor, and walked out with apap machines.

Was it a Dr. Vanek by any chance?

Sounds to be the same idiotic doctor I had.

[CHanlon]

Another suggestion I will make to you is to skip auto altogether and go straight for a bilevel or bilevel auto.

If its comfort your looking for then bilevel is the way to go - a plain auto cpap may not work out for you the way you expect or would hope.

Hope this helps

I wouldn't go quite that far. There are any number of us here that do just fine on an autoset... Especially when it's set up right.

I know what you mean about doctors in Ontario, though. I couldn't convince mine to prescribe an s9 autoset for the 3 months I tried. When I said I couldn't adjust to the 19 pressure that 3 weeks on an apap suggested I needed, his answer was to set it to 16. Then I finally got my titration study... And he told me 14! Keep in mind, my first study showed 76 events per hour... At 14 I couldn't even breathe. But that's just because he "couldn't justify an autoset to Ohip." I had to show pressure variance of 5 or more. Um... 19 minus 14...? I finally told him to give me the prescription and I'd buy it myself. Found out from the RT that "oh, he will never prescribe apap, he doesn't believe in it." In the same period, 2 family members went to a different doctor, and walked out with apap machines.

Was it a Dr. Vanek by any chance?

Sounds to be the same idiotic doctor I had.

No, i'm in St. Catharines, this guy was head of respiratory med at the general. The one place I told my go that I would prefer not to go. There are 2 sleep clinics in town, my relatives went to one of them. Took them less than a month from walk in to a machine. Took me 6, a ton of arguments, and buying the machine myself. Never been back to him. I was supposed to go back after a year, even made the appointment. They told me if get a reminder call, I didn't, so I didn't bother with him again.