No Improvement - Five Months Later

[Randomsanity]

Hello Everyone,

I posted here with some issues when I first received my CPAP a few months ago and received some excellent advice. I'm now back to say that after 5 months on my CPAP, using it for 5-7 hours per night (100% of the sleep I manage to get) I still do not feel any better.

I am 24-years-old and back in February I was diagnosed with mild sleep apnea and an API of 18. I live in Canada so I purchased the basic machine that was covered by OHIP (Resmed Tango) and have been using it consistently since my titration a few weeks later where my pressure was raised to 8. I struggled for a few weeks finding a mask that did not destroy the skin on my face or leak too much and ended up settling for the Resmed Activa LT and a chin strap.

An hour after I wake up each morning I already feel like I've been working a 12 hour shift and if I close my eyes even for a moment I feel my head spinning and am very close to falling asleep. I've fallen asleep on the subway several times, which is something I have never been able to do in the past as I've always been very uncomfortable and unable to sleep in public places. I should probably mention that one of the reasons that drove me to see a sleep specialist in the first place was that I have issues falling asleep and sometimes it takes me several hours of doing so, even with medication. This also has not improved.

I also had my GP run a few blood tests for some of the other conditions I heard mentioned on these forums that have many symptoms in common with OSA. He said I am fairly healthy aside from slightly elevated cholesterol, and had nothing to indicate any thyroid problems or anemia.

I can't get another appointment with my sleep doctor until late October, so I suppose I am really just looking for some advice from the more experienced users here. Has anyone been in a similar position in the past? What worked for you?

Thank you.

[BleepingBeauty]

Hello Everyone,

I posted here with some issues when I first received my CPAP a few months ago and received some excellent advice. I'm now back to say that after 5 months on my CPAP, using it for 5-7 hours per night (100% of the sleep I manage to get) I still do not feel any better.

I am 24-years-old and back in February I was diagnosed with mild sleep apnea and an API of 18. I live in Canada so I purchased the basic machine that was covered by OHIP (Resmed Tango) and have been using it consistently since my titration a few weeks later where my pressure was raised to 8. I struggled for a few weeks finding a mask that did not destroy the skin on my face or leak too much and ended up settling for the Resmed Activa LT and a chin strap.

An hour after I wake up each morning I already feel like I've been working a 12 hour shift and if I close my eyes even for a moment I feel my head spinning and am very close to falling asleep. I've fallen asleep on the subway several times, which is something I have never been able to do in the past as I've always been very uncomfortable and unable to sleep in public places. I should probably mention that one of the reasons that drove me to see a sleep specialist in the first place was that I have issues falling asleep and sometimes it takes me several hours of doing so, even with medication. This also has not improved.

I also had my GP run a few blood tests for some of the other conditions I heard mentioned on these forums that have many symptoms in common with OSA. He said I am fairly healthy aside from slightly elevated cholesterol, and had nothing to indicate any thyroid problems or anemia.

I can't get another appointment with my sleep doctor until late October, so I suppose I am really just looking for some advice from the more experienced users here. Has anyone been in a similar position in the past? What worked for you?

Thank you.

Hi, Random, and welcome back.

It sounds like you're dealing with two issues here - a form of insomnia and poor therapy. I can't help you with the insomnia, but others can (or do a search here on the forum, as there have been many discussions about that).

I'm not familiar with the Tango machine (it's no longer manufactured, so I can't find any info on it). Is it data-capable? Do you have any idea what your AHI and your leak rate is? Without that info, it's very difficult to advise you on any changes you might want to make to your settings to improve your therapy experience. Obviously, it's not going well as-is, but without that important information, we're all in the dark (including your sleep professionals) about what changes are needed.

Are you sure you're not mouth-breathing (or mouth-leaking) with your nasal mask and chinstrap? If you are, your therapy will not be effective. (Do you notice that your mouth is dry in the morning? That's a telltale sign of mouth-breathing.) Nasal breathing is better for us, but you CAN achieve good therapy as a mouth-breather IF you have a mask that covers the mouth so you're not losing therapy air to the bedroom.

If your machine DOES provide data, you can take a screenshot of it, upload to a photo-sharing site (like Photobucket or flickr) and post the images here on the forum for others to analyze. If the machine doesn't provide any efficacy data, my suggestion is to try a mask that covers the mouth, in case you ARE mouth-breathing with the nasal mask. But without the data, finding answers to the therapy problems you're having is a stab in the dark.

Search the forum (or just Google) for "sleep hygiene" and follow the advice. Reworking my own sleep regimen really helped me achieve better therapy.

P.S. The only "bright spot" I see right now is that you're falling asleep on the subway, and not behind the wheel. (But obviously, that's not good.) Hang in there, though. With patience and determination, you can get there.

[Janknitz]

As Bleeping Beauty pointed out, if you don't have data, you have no way of knowing whether or not your therapy is optimal for you. I would guess it is not, given the fact that you still have symptoms.

I know it may not be easy to do in Canada, but you need to go back to see your doctor and perhaps have a new sleep study with the current mask and see if the pressures are correct and whether you are having any leaks. Seems like the Canadian medical system could save itself a lot of money by giving people data capable machines so they don't have to run an entire sleep study just to find out of the pressure is correct. Penny-wise, pound-foolish.

Or, if you can afford to, try to pick up an inexpensive data capable machine (auto if possible) on the auction site or some other source.

I have heard that those with mild apnea don't notice the benefits of therapy as much as people with severe apnea, if for no other reason than those with mild apnea weren't having very severe symptoms to begin with. But it still sounds from your description that you are not getting effective therapy. I had some degree of insomnia before CPAP and I sleep so well now. I barely remember my head hitting the pillow before I'm asleep, and I generally stay asleep all night.

[SleepyT]

I agree with the others....sounds like you could use a tweak or two...perhaps to control leaks? Also...you may be paying back a large sleep debt and 5 months isn't enough yet. You say 'no improvement'. Have you stopped going to the bathroom 3 to 5 times a night? If so...there is improvement...maybe just so small you don't notice it because you are looking to feel 100% better at this point.

Either way...see if you can check on leaks...and then....be patient!

[echo]

Without further info to go on, two things could be a problem that you can attempt to troubleshoot yourself while you wait for your doctor's appointment and/or get a data capable machine. (You REALLY need to get a machine that can capture info like AHI, Leaks, etc, and you need to get the software and card reader to go with it. only this way can you really track and optimize your therapy.)

First are leaks. Try to figure out if the mask is leaking while you're asleep (odds are low since the Activa seals really well, but it could be the wrong size or it just doesn't fit you). A video or tape recorder can help with this. Another possibility is mouth leaks (more likely), and of this is happening, you might actually feel WORSE with the therapy than without it. Dry mouth in the morning is a good indication, or empty humidifier tank (you DO have a humidifier with the machine, right?). Possible solution is "mouth taping", please do a search for this on the forum.

Second, your pressure may be too high, or more likely, too low. But do not change your pressure until you're sure mouth breathing or mouth leaking is not an issue.
A low AHI does not automatically translate to a low pressure, there is no correlation.
While it's harder to find your optimal pressure without the data, it is still possible... you need to start a diary and note how you feel in the mornings. For example make some columns for things "slept through the whole night", "had headache upon waking up", "fell asleep X times during the day", "started getting very tired at X pm during the day", "number of hours slept", you get the idea.. track the symptoms that are most meaningful for you. Then, starting at your current pressure, increase by 0.5 cm and stay at that pressure for ONE WEEK. Fill in your diary every day. The following week, increase again by 0.5cm and stay there again for a full week. Don't hesitate to go up to 10 or even 12 cm like this. After a while, you may notice a trend, hopefully positive, in your diary. One thing to be careful with, some people have issues with what are called "central apneas", usually above a certain pressure like 10 cm. This may or may not be a problem for you, and it will most certainly have been noted on your sleep study. (DO get a copy of all your studies, including detailed info).

As for the insomnia problem, do a search on "delayed sleep phase syndrome". This will not be relieved by cpap, and is another disorder all on its own. It can be incorrectly diagnosed as insomnia but it is actually a shift in the circadian rhythm, preventing you from going to sleep at socially accepted times.

good luck, and keep us posted.

[Randomsanity]

Thanks for the replies, I appreciate the advice.

I'm not familiar with the Tango machine (it's no longer manufactured, so I can't find any info on it). Is it data-capable? Do you have any idea what your AHI and your leak rate is? Without that info, it's very difficult to advise you on any changes you might want to make to your settings to improve your therapy experience. Obviously, it's not going well as-is, but without that important information, we're all in the dark (including your sleep professionals) about what changes are needed.

Are you sure you're not mouth-breathing (or mouth-leaking) with your nasal mask and chinstrap? If you are, your therapy will not be effective. (Do you notice that your mouth is dry in the morning? That's a telltale sign of mouth-breathing.) Nasal breathing is better for us, but you CAN achieve good therapy as a mouth-breather IF you have a mask that covers the mouth so you're not losing therapy air to the bedroom.

This machine is not data capable. When I went for my first sleep study I had no knowledge of sleep apnea or cpap machines. My doctor told me I had mild sleep apnea with an AHI of 18 and wrote me a prescription for a cpap machine then sent me off to a local provider called Medigas. It was not until then that I really learned anything about cpap machines, and still did not know anything about the data capable machines as the sales rep did not mention anything about it. I was not provided with a loaned machine or even given the option to rent one to try it out.

I was told that OHIP would cover $780 of the basic machine and I would have to pay the remaining $280 myself and would be provided with a basic mask for free. If I wanted a better machine I would have to pay for it myself, likewise with the mask. If you live in Ontario and you have seen the free mask, you will know that it is not possible to sleep with that thing on your face.. it is just solid plastic with no cushion. Being 24 and recently out of school with a rather large amount of student debt, plus not knowing that a machine without data is virtually useless, I opted for getting the basic machine for $280 instead of the next model up which would cost me $680 out of pocket, and I sprang for a mask that I could actually sleep with for an additional $265 I could not really afford.

I began with a nasal mask and was miserable for the first week due to mouth breathing. I returned that mask and got a Mirage Quattro which was an absolute nightmare for me. Not only did it leak everywhere but for some reason my skin had a weird reaction to it and it left an enormous welt on my nose which lasted for weeks. I let it heal, and then tried the mask for another night with the same results. Needless to say, after this I returned my mask and went back to the nasal mask plus a chin strap so I very well could still be doing some mouth breathing. I have heard some people use medical tape to stop this and will be trying that in the next few days.

I agree with the others....sounds like you could use a tweak or two...perhaps to control leaks? Also...you may be paying back a large sleep debt and 5 months isn't enough yet. You say 'no improvement'. Have you stopped going to the bathroom 3 to 5 times a night? If so...there is improvement...maybe just so small you don't notice it because you are looking to feel 100% better at this point.

Either way...see if you can check on leaks...and then....be patient!

I never really had a problem with waking up to use the washroom during the night, though I would usually wake up with a painfully full bladder as a result. I suppose I am lucky that I am not driving to work anymore. Thanks for the encouragement.


So am I really out of luck without having a data capable machine? I have already had two sleep studies done this year, which is the maximum that OHIP will cover, so that is not an option either. It sounds like Canada is seriously messed up when it comes to sleep apnea. This is a surprise to me, as it has always been a great benefit for everything else.

[echo]

You might be able to make a deal with this person who wants to get rid of an S8 elite: viewtopic.php?f=1&t=54129&view=unread#p504389
You can also try cpapauction or craigslist for a used machine with software.

As far mouth leaks, for me no amount of chinstraps or staples helps. I need either the tape or a FFM. That goes for many people, the chinstrap just doesn't stop the leaks.

[Randomsanity]

Without further info to go on, two things could be a problem that you can attempt to troubleshoot yourself while you wait for your doctor's appointment and/or get a data capable machine. (You REALLY need to get a machine that can capture info like AHI, Leaks, etc, and you need to get the software and card reader to go with it. only this way can you really track and optimize your therapy.)

First are leaks. Try to figure out if the mask is leaking while you're asleep (odds are low since the Activa seals really well, but it could be the wrong size or it just doesn't fit you). A video or tape recorder can help with this. Another possibility is mouth leaks (more likely), and of this is happening, you might actually feel WORSE with the therapy than without it. Dry mouth in the morning is a good indication, or empty humidifier tank (you DO have a humidifier with the machine, right?). Possible solution is "mouth taping", please do a search for this on the forum.

Second, your pressure may be too high, or more likely, too low. But do not change your pressure until you're sure mouth breathing or mouth leaking is not an issue.
A low AHI does not automatically translate to a low pressure, there is no correlation.
While it's harder to find your optimal pressure without the data, it is still possible... you need to start a diary and note how you feel in the mornings. For example make some columns for things "slept through the whole night", "had headache upon waking up", "fell asleep X times during the day", "started getting very tired at X pm during the day", "number of hours slept", you get the idea.. track the symptoms that are most meaningful for you. Then, starting at your current pressure, increase by 0.5 cm and stay at that pressure for ONE WEEK. Fill in your diary every day. The following week, increase again by 0.5cm and stay there again for a full week. Don't hesitate to go up to 10 or even 12 cm like this. After a while, you may notice a trend, hopefully positive, in your diary. One thing to be careful with, some people have issues with what are called "central apneas", usually above a certain pressure like 10 cm. This may or may not be a problem for you, and it will most certainly have been noted on your sleep study. (DO get a copy of all your studies, including detailed info).

As for the insomnia problem, do a search on "delayed sleep phase syndrome". This will not be relieved by cpap, and is another disorder all on its own. It can be incorrectly diagnosed as insomnia but it is actually a shift in the circadian rhythm, preventing you from going to sleep at socially accepted times.

good luck, and keep us posted.

Hi Echo, thanks for the detailed response! I will whip up a chart in excel and begin filling it in over the next few weeks. However I do not think it is possible for me to get a data capable machine at this point, as OHIP will only cover $780 towards a basic machine every 5 years. If only I had done the proper research before buying a machine I would have taken out a small loan and paid the extra $400 for a data capable machine. If I was to purchase one now it would run me about 2 grand or more, which I simply cannot afford to pay with my current student loans.

I will however, get a copy of the two sleep studies I had done, including the titration with a nasal mask when I visit my doctor again in October.

My doctor did mention the delayed sleep phase syndrome as well, and recommended that I try using malatonin to combat this. It was of some help at night and allowed me to fall asleep within an hour or so, but it left me feeling even worse in the mornings. I'll start reading up on other topics.

[echo]

Try taking the melatonin at a lower dose, and about 12 hours before you want to get up. That might help. The only other gold standard treatment I've read about is bright light therapy in the mornings (and avoiding computers and bright lights at night). There's also chronotherapy but that's tough. I'm struggling with this, it's not so easy to "control".

Probably you didn't see my other post yet, but I bet you will be able to find a good deal on cpapauction if you look around for a few weeks.

Depending on your current budget, cpap.com mig also be an option. I got a brand new puritan bennett data capable machine plus software for something like $700, you might want to look into that too.

[Random]

Try taking the melatonin at a lower dose, and about 12 hours before you want to get up. That might help. The only other gold standard treatment I've read about is bright light therapy in the mornings (and avoiding computers and bright lights at night). There's also chronotherapy but that's tough. I'm struggling with this, it's not so easy to "control".

Probably you didn't see my other post yet, but I bet you will be able to find a good deal on cpapauction if you look around for a few weeks.

Depending on your current budget, cpap.com mig also be an option. I got a brand new puritan bennett data capable machine plus software for something like $700, you might want to look into that too.

Thanks again for all the help, I have left a post for the person selling the S8 and have started looking at craigslist and cpapauction.com. Unfortunately $700 is far too much for this point in time, as I have just spent around that on my useless machine and the mask. However I will certainly keep that in mind for the future.

I believe the problem with cpap.com was that there are laws preventing them from shipping to Canada due to the price differences.

[echo]

ok, One Last Post from me! Please register on the forum, that way people can send you PMS to contact you directly. You can also fill in your equipment profile and help us remember what you're using when we are trying to troubleshoot problems.

Cpap will ship to canada for some (bit not all) products. I think Resmed is on the black list, but perhaps not others.

Note that on cpapauction as well as cpap.com you WILL need to have a valid prescription on file. You can get this from your GP/PCP, and check with the website for the info that needs to be on the prescription.

ps you have a GREAT attitude despite your troubles and setbacks. This alone will help make you successful with your therapy!

[Julie]

I would like to say something, using Cpap without a data capable machine is NOT useless! Not using a machine when you have OSA is useless. We don't all have machines that let us track every minute of our sleep, but we still can have much better sleep (and wakefulness) using some machine, almost any one. There are newer machines (S9, PR system 1, Intellipap) that you can enter codes on websites with and learn your AHI, pressure, leak rates and more, without having long pages of graphs. If you can scrounge money somehow, I suggest the Intellipap Auto (Travel) machine because while it's called a travel one, that's just because it's small, but is very sturdy and long lived, just as good as the others, but less expensive. Don't fret over software, just get treated.

[jweeks]

I would like to say something, using Cpap without a data capable machine is NOT useless! Not using a machine when you have OSA is useless. We don't all have machines that let us track every minute of our sleep, but we still can have much better sleep (and wakefulness) using some machine, almost any one. There are newer machines (S9, PR system 1, Intellipap) that you can enter codes on websites with and learn your AHI, pressure, leak rates and more, without having long pages of graphs. If you can scrounge money somehow, I suggest the Intellipap Auto (Travel) machine because while it's called a travel one, that's just because it's small, but is very sturdy and long lived, just as good as the others, but less expensive. Don't fret over software, just get treated.

Julie,

I'd argue just the opposite. CPAP doesn't work on a sliding scale. 50% of the correct pressure doesn't give you 50% of your treatment. Rather, if you are not at your right pressure, you might as well not be using the machine at all.

The original poster has 2 options. (1) get in to see a doctor (insurance or not), and let the medical system figure this out. (2) figure it out on his/her own. Number 2 is a little more iffy without a medical degree and experience in the area, but many folks on the board have had to take matters into their own hands and figure it out. Number 1 might be the safer option, especially if the original poster has a complex issue.

In either case, not having software means that he/she has no clue what the machine is doing, or why the therapy isn't working. Granted, once the issue is figured out, the software becomes much less of an issue. However, when you are having a problem, there is almost no way to figure it out without having the data and the graphs.

I'd suggest that the original poster do whatever is necessary to buy a new data capable machine. If that means delivering pizzas at night or working weekends at Walmart, then that is what it takes. While a machine might be expensive, consider what the costs would be if he/she (a) lost a job over being sleepy, (b) had an accident, or (c) had a major medial problem develop due to untreated OSA. This is a life and financial threatening problem. One has to do whatever it takes.

-john-

[SleepingUgly]

As Echo said, you should be taking a small dose of melatonin (.5 to 1mg) approximately 6 hours before you normally get tired, or 12 hours before you want to get up. So, for example, you might take it at 6pm, and then get up at 6am. It may make you tired an hour after you take it, but you don't necessarily want to use it as a "sedative" when your goal is to shift your circadian rhythm. If you have a way to expose yourself to bright light immediately after waking for about 45-60 minutes (or whatever you can do), that would be good. I won't suggest a portable light box because I understand money is tight. Sunlight works better anyway. Google "sleep hygiene" as well as insomnia, and you will get lots of tips, including going to bed and waking at the same time each day, not staying in bed for longer than 20 minutes if you aren't sleeping, not doing anything in bed other than sleeping, no bright lights at night, etc.

Let me know if this works, and if so, I'll try it. Seriously, I have a problem with going to bed too late and waking up too late myself. I wish the rest of my world would get on my time clock.

My understanding is that, to some degree, in some people, this preference for night vs. morning is genetically determined and is difficult to alter. But things like sleep hygiene, melatonin taken at the right time, bright lights, etc., may help, and certainly shouldn't hurt (except the getting up early part--that hurts me a lot.)

[Julie]

But even without software a person can tell if they feel better or not, if they still need lots of naps or not, if they're able to do more or not. If someone is careful about starting at a low pressure (e.g. 7) and gradually raising it until they feel good, why is that terrible? Obviously if they start out (randomly) at too high a point (e.g. 12-15) unnecessarily they could end up sorry, but as what seems to be the great majority of us are around 10 (or 8-12 if you want for an auto) then how much harm would be done by someone 'settling' comfortably there after trying a lower number? The person may be able within a year or two to get a better machine, but you can't really believe that no therapy vs a bit of trial and error is better!