I am very worried and need advice

[Acheron]

I am very worried right now and need some advice from those here with experience with OSA.

I've been using a CPAP machine for about 1.5 years, with limited success. But in the last 2 months (or so) things have really gone downhill. I am sleeping very poorly and feel lousy all the time. And I can't even seem to sleep anymore without the mask.

What has me worried right now is that I just took a nap, about 45 minutes without the machine, and right now I feel as bad as bad as I ever have and honestly wonder if I haven't just had a stroke. I was lying on my side, which usually worked in the past for naps, but this time caught myself not breathing as I was napping and jerking awake. I have a headache and feel like I haven't slept for a week.

I have an appointment with my sleep doctor in a week, but I don't expect much to come of it. I've tried higher pressures (15-20 Auto), but couldn't keep the mask from leaking. I'm now back to 14 straight. I sleep through the night, but am usually tired and, lately, almost unable to work or do anything much throughout the day.

I'm almost afraid to go back to sleep right now, with or without the machine.

Making all this worse is that I have no health insurance and enough in savings that I don't qualify for any assistance programs. (I had state-sponsored insurance for 6 months, but then lost it.) I'm already spending about $300/month just for the basic health care I need -- any trips to specialists are out of the question. I don't know if something else is wrong with me or if it's just the sleep problem.

I honestly think I am coming to the end of my life. I do. I'm only 51, but my health has really spiraled down in the last 5 years and I don't know how to stop it. And I don't even think I mind if things come to an end -- I just don't want to have a stroke and be impaired. (That happened to my father and it was pathetic.) I'm alone too and don't have anyone for help or support, and this savings I have is all I have to live on if/when I can't be productive. (I never make more than about $25K/yr anyway.)

Has anyone possibly been in a somewhat similar position and had things improve?

[Elle]

I'm sorry things are seeming so hopeless right now. Struggling to get cpap right is difficult and can cause all kinds of problems. It can be disheartening enough to cause depression if you might have been prone so I wonder if you can see a doctor to talk about something to get you over the hump? You almost have to be either really poor or really wealthy to get what you need so it must be frustrating.

I don't have answers for solving the cpap mysteries you face but wanted to just say I feel for you and hope things improve. It can make you want to give up but please keep on trying to find answers.

[Pugsy]

Your profile shows the Respironics BiPap in the Legacy series and your humidifier shows M Series. One is wrong because they won't work together. Can you please check your machine to see if it looks like your choice or if you have the M Series BiPap.

Do you have the DT Infineer 3500 card reader for your machine (works with either M series or Legacy machines)? Do you have the software to use to see your reports?

[avi123]

From my own experience I know it that cases like this one could be best treated by a psychiatrist who deals with sleep disorders.

[Julie]

I would be very interested to know what mask you're using - it can make all the difference if it's not the 'right' one for you, doesn't fit correctly, doesn't address mouth breathing, etc. etc. If you can post the name and model it might help us to help you.

[Pugsy]

2) Lower the inhalation pressure to 10 cm and the exahalation set to 6cm, and see if it is helpful.

Huh? What would we think to gain from cutting therapy pressures in half and then some? It will sure be easy to go to sleep with those pressures but not stay asleep for long if a truck load of events starts showing up because the pressures aren't sufficient to deal with the airway collapse.
I don't think this would be a wise move until more information is gathered and I have a hard time thinking of any scenario where this would be an improvement but I won't say it is impossible.

There is software available for this machine. The M Series machines use a smart card to collect data and it is similar in size to a credit card. The DT 3500 Infineer card reader is needed to use the software.
$40 is cheapest I have seen. The software is easy to get, I can help with the software.

Without seeing the reports we have zero chance of coming up with any idea what is going on.
Heck, may be leaking like a sieve for all we know.

[DoriC]

I would be very interested to know what mask you're using - it can make all the difference if it's not the 'right' one for you, doesn't fit correctly, doesn't address mouth breathing, etc. etc. If you can post the name and model it might help us to help you.

I agree , the right mask is Key! If you're a mouth breather you may need a full face mask if you're not already using one. Are your cushions/pillows, headgear being replaced regularly? Give as much info as you can, especially the correct machine and mask and you'll get help in sorting this out. If your titration was 14cms, setting it to 10cms would probably not be a good idea. Since your leaks are not under control yet, using straight pressure at this time might be a better idea than auto setting which might cause more leaking with changing pressures. Keep us posted and hang in there.

[indyzoom]

Two questions: what is the problem with your sleep? Are you sleeping but not feeling rested, waking up a lot, or not sleeping? Do you know why? I.e. uncomfortable, pain, etc?

Second question -- do you suffer from migraines? I do and it impairs my sleep, so I have medicine I take for it.

[Pugsy]

I've tried higher pressures (15-20 Auto), but couldn't keep the mask from leaking. I'm now back to 14 straight. I sleep through the night, but am usually tired and, lately, almost unable to work or do anything much throughout the day.

If you are using straight 14 cm pressure and you need 17 or 18 to deal with the events, then using 14 cm simply isn't enough to prevent the events from happening and you will sure feel horrible.
Of course if mask leaks horribly at 17 or in the auto range...that will mess with your sleep and you will feel horrible. And yes, it is hard to get a mask to seal well at these pressures.

Many people here that use higher pressures get help with mask liners and even an anti leak strap from Padacheeks. Don't know which mask you are using but worth looking at these or even changing to a different mask. You can't begin to expect to feel improvement till you can sleep at the pressures you need to prevent the apnea events. Check this site for liners and the anti leak strap.
http://www.padacheek.com/

[Acheron]

Thanks for these replies.

I'm sorry, I don't know alot about these machines. I've fixed my profile and it should display correctly now in my signature.

My initial sleep test found 131 apneas/hr without a CPAP machine. Nine months later, after using the machine, my average AHI=28 at 14 cm H2O. I'm having my card read now and I'm due to get new results in a week.

I don't know why things have deteriorated so in the last several weeks. I was doing relatively well, have lost 40 lbs, and have been doing some good work and had a good 4th quarter. But now I feel like crap, and am getting very depressed. (I've had depression in the past, but thought I was on top of it all). What worries me is that I don't care that I'm getting depressed and frankly I'm losing hope and I'm starting not to care if my time is short. I have a host of problems -- high blood pressure, high cholesterol, gout, obesity -- and things were improving but these latest sleep problems are ruining all that. I just have a feeling that something is different, and not good. I can't explain it except to say that I feel it. I know I'm all lined up to be the typical fat American that dies in their mid-50s -- you all know exactly the type I mean -- and I don't feel I have anything to live for anyway -- no wife, no children, no close friends, just a couple of cats. I am also angry that I cannot get any specialized care and I have grown resentful of the US health care system and hateful towards America in general.

[Dazzles]

If your O2 is dropping when you sleep that can most definitely cause really had headaches.

As a migraine sufferer myself I understand how horribly difficult they can be. I am currently off my medication to see if it helps me sleep.

[indyzoom]

Thanks for these replies.

I'm sorry, I don't know alot about these machines. I've fixed my profile and it should display correctly now in my signature.

My initial sleep test found 131 apneas/hr without a CPAP machine. Nine months later, after using the machine, my average AHI=28 at 14 cm H2O. I'm having my card read now and I'm due to get new results in a week.

I don't know why things have deteriorated so in the last several weeks. I was doing relatively well, have lost 40 lbs, and have been doing some good work and had a good 4th quarter. But now I feel like crap, and am getting very depressed. (I've had depression in the past, but thought I was on top of it all). What worries me is that I don't care that I'm getting depressed and frankly I'm losing hope and I'm starting not to care if my time is short. I have a host of problems -- high blood pressure, high cholesterol, gout, obesity -- and things were improving but these latest sleep problems are ruining all that. I just have a feeling that something is different, and not good. I can't explain it except to say that I feel it. I know I'm all lined up to be the typical fat American that dies in their mid-50s -- you all know exactly the type I mean -- and I don't feel I have anything to live for anyway -- no wife, no children, no close friends, just a couple of cats. I am also angry that I cannot get any specialized care and I have grown resentful of the US health care system and hateful towards America in general.

Well, you've got some friends on here!

If you're still at 28 AHI, you're not cured. I would suspect you need a higher setting. If you can post your data on here, I'm sure some people could help identify the problem.

Have you had a blood test recently? I had extremely low vitamin D, and I think others here have had that as well. Something as simple as a high dose of vitamin D for a month or two, then a normal continuation dose might help. I believe a vitamin D deficiency can cause depression, so it's worth a thought.

[Pugsy]

AHI of 28.....way to high. 14 cm is not enough pressure. It is no wonder you feel like total crap.

I have used the M Series APAP you are using so I am familiar with it and the card reader and the software.

You need more pressure (back up to your prescribed settings) so we need to figure out something to let you use the higher pressures that you need that won't leak all over the place and wake you up leaking all night.

You have to use your higher titrated pressure.. that 14 cm is not going to do it at all well enough to expect any improvement in how you feel.

[robysue]

I am very worried right now and need some advice from those here with experience with OSA.

I've been using a CPAP machine for about 1.5 years, with limited success. But in the last 2 months (or so) things have really gone downhill. I am sleeping very poorly and feel lousy all the time. And I can't even seem to sleep anymore without the mask.

Several comments:

1) Don't sleep without the mask---ever. Use it for all naps and every night. Yes, you're not sleeping well with the mask, but as your maskless nap showed, it's even worse when you sleep maskless.

2) Can you describe what is poor about your sleep when you sleep with the mask? The better and more precisely you can describe your specific problems, the more likely it is that the doc someone or someone here can make a useful suggestion that will help you. For starters, think about these questions:

Do you lie awake for long periods of time when you first go to bed?
Do you wake up (perhaps gasping for breath) at frequent intervals during the night?
Do you toss and turn for long periods of time when you are lying in bed?
Do you seem to sleep through the night with no conscious wake ups, but still feel lousy and unrested when you get up in the morning?
How is your sleep hygiene?

3) As others have pointed out, your machine does record full efficacy data. Do you know whether your therapy is effective in the sense of reducing your AHI to below 5 on a consistent basis? Do you know what your leak line typically looks like? Even if you don't have the card reader for your machine, your sleep doc's office and/or your DME should be able to read the card for you and print out all of the data. You need to bring that data (or at least card) with you to your next appointment with the sleep doc. If you can't get a printout before hand, call the doc's office and ask them if they can read the card for you and print out the data. That data may well reveal something about what's causing (some of) your problems.

4) Others have pointed out the necessity of finding a mask that works for you. I'll ask the equally important questions: How old is your current mask? How old is the mask cushion or seal or pillows? Masks don't last forever and aging mask cushions, pillows, and headgear can all trigger serious mask leak problems that interfere with therapy. Also, how old is the hose and when is the last time you carefully checked for leaks? When's the last time you the CPAP filter? Do you have a humidifier and do you use it? If you can't afford these items from your local DME, you should start shopping on line---even with things like E-bay and Craig's list if there's no other way to afford the replacement parts that you need on a regular basis.

I have an appointment with my sleep doctor in a week, but I don't expect much to come of it.

If all you do is go to the doctor and say, "My sleep is really bad and I'm feeling lousy." but you can't describe anything more specific about what is "bad" about your sleep, then the meeting may very well be unproductive.

So you MUST go to this appointment prepared. Bring the following things with you. If possible, you might even want to drop them off at the doc's office a day or two before the meeting and ask that the doc look at them before your meeting:

• A full data printout of the data recorded by your machine.
• A written description of exactly what you are experiencing at night that is making your sleep so lousy. Concentrate on the symptoms. (See the above list of questions ttoo help you start figuring out what you want.
• A list of other daytime symptoms that might be related to how lousy your sleep is.
• A complete list of all the medicines and supplements that you are currently taking AND a list of all your diagnoses so that you don't forget something important about your medical history.
• A written list of questions you specifically want the doc to address
• Paper and something to write with so you can make notes of what the doc says to you.

Making all this worse is that I have no health insurance and enough in savings that I don't qualify for any assistance programs. (I had state-sponsored insurance for 6 months, but then lost it.) I'm already spending about $300/month just for the basic health care I need -- any trips to specialists are out of the question. I don't know if something else is wrong with me or if it's just the sleep problem.

What are you currently spending $300/month on? In other words, what are your other medical conditions. Maybe one of them is causing sleep problems in addition to the OSA when you don't sleep with the mask on.

And what other symptoms are you having?

Has anyone possibly been in a somewhat similar position and had things improve?

Unfortunately, in order to improve, you need to get all of your potential medical issues under control. The CPAP will address the OSA, but it won't directly fix any other problems. So if you've got something like an underactive thyroid, you need have that issue under control as well as the OSA under control before you'll start feeling better.

[robysue]

My initial sleep test found 131 apneas/hr without a CPAP machine. Nine months later, after using the machine, my average AHI=28 at 14 cm H2O. I'm having my card read now and I'm due to get new results in a week.

A treated average AHI = 28 is way, way too hight: An AHI = 28 on a diagnostic sleep test is near the border between moderate and severe OSA for diagnostic purposes. With CPAP/APAP it should be much, much lower.

Unfortunately the M-Series does not try to distinguish between central apneas and obstructive ones. I wonder if part of problem might be centrals. Or it could be that the OSA has gotten substantically worse in the last couple of months. Has your AHI under treatment ever been as low as 5? If so, when did it start to creep up? If not, what was the lowest it went when you were feeling your best?

I don't know why things have deteriorated so in the last several weeks. I was doing relatively well, have lost 40 lbs, and have been doing some good work and had a good 4th quarter. But now I feel like crap, and am getting very depressed. (I've had depression in the past, but thought I was on top of it all). What worries me is that I don't care that I'm getting depressed and frankly I'm losing hope and I'm starting not to care if my time is short. I have a host of problems -- high blood pressure, high cholesterol, gout, obesity -- and things were improving but these latest sleep problems are ruining all that.

Mention all these problems to the sleep doc. And if you have a primary care doc, it's time to schedule a full physical exam and let the doc's office know that you need a lot of time to talk about a lot of problems. A full set of blood tests is called for too.

If you are on multiple medicines for all these conditions, it's also worth asking both the docs who are treating you AND the pharmacist about possible drug interactions. It's also worth reading all those dull, "drug information" package inserts to find out if any of the drugs have side effects that adversely affect your sleep or breathing or mood. You can also find out whether there are potential drug interactions on line.

As for paying for all this given that you have no insurance, but have to much in savings to qualify for assistance programs, I think that you need to start asking for whatever kind of help you can get. Why did you lose the state sponsored insurance? Can you reapply for it?