I Need Help

SpookyFodder · Post by **SpookyFodder** » Wed Oct 04, 2006 8:52 am

Hi folks.

I have been dealing with severe daytime sleepiness for over a decade and a half. Most of that time I had been treated for depression and although I have no doubt that I was at times depressed it still did not help with the lethargy I felt. It has been so bad that I have been on disability as much as off in that period of time. I am young still (37) but have already had a heart attack 2 years ago. I was at one time a very active person and I am not over weight but have become increasingly sedentary over the last several years. I have become somewhat isolated/alienated as a result of needing so much sleep and being tired as well as as the typical socio-economic decline.

I was diagnosed as having severe OSA about 4 months ago as well as RLS. My study revealed that I had an AHI of 51.8/hour with a low blood oxygen saturation of 80% There were also come periodic leg movements 30/hour and intermittent bradycardia. For the OSA I was sent home with a with a cpap machine set to 7cm of water. Later I was given a prescription for Sinemet (100/25) for the RLS (which is going to be changed something more apropiate).

Heres the thing. Before the diagnosis I had pretty much resigned myself to live out my life like this..... at times not even able to fully look after myself. The first 3 weeks of treatment changed my life literally and gave me a taste of better health. I had actually made arrangements to come off disability and was going to start running again for the first time in 8 years. I felt that good. It was unbelievable. It did not last however and I am as bad now as I ever was as of the last couple of weeks. I asked to have the pressure increased from 7 to 9 about a month ago and it has not really helped. I am so disheartened. I don't really know how to proceed. I am not having any compliance issues. I did notice that at 7 cm of water I'd wake up feeling as though I was suffocating and at 9 that has gone away. The humidity seems to be set about right for me as any higher and I find it uncomfortable. I am not sure if mask leaks are a problem or not. I cant tell. Nothing obvious anyhow.

Please help. Please.

Wulfman · Post by **Wulfman** » Wed Oct 04, 2006 9:01 am

Several possibilities.....

Mouth leaking......you're not getting the therapy you need. Need to at least try taping or Polident strips for awhile and see what happens.

Your pressure still isn't high enough.

You're still in the "recovery curve".....you body still has a ways to go to get caught up.

Need to get an overnight pulse-oximetry test done to see if you're still desaturating. It's free with prescription from your doctor.

Best wishes,

Den

NightHawkeye · Post by **NightHawkeye** » Wed Oct 04, 2006 9:27 am

SpookyFodder, have you considered getting an APAP machine which would adjust to changing pressure requirements, and would also allow you to monitor your therapy.

Den's also right about an oximeter being another good way to monitor your therapy, although that could be nearly as expensive as an APAP, if you wanted to keep it around permanently.

Regards,
Bill

Wulfman · Post by **Wulfman** » Wed Oct 04, 2006 9:49 am

NightHawkeye wrote:Den's also right about an oximeter being another good way to monitor your therapy, although that could be nearly as expensive as an APAP, if you wanted to keep it around permanently.

Regards,
Bill

But the overnight test would at least give a "snapshot" of what's going on.
Right now, I'd be willing to put money on the mouth-leaking scenario.
(and maybe a little extra pressure, too.)

Den

ozij · Post by **ozij** » Wed Oct 04, 2006 11:00 am

Spooky,
I agree with Den and Bill.

An overnight, immediate oximetry will let you know where you're at oxygenwise.

An auto adjusting machine will let you monitor your therapy daily - if necessary, and possibly (not necessarily) give you better therapy too. It gives better therapy for some, doesn't for others. The important point is the detailed monitoring of sleep events - that is invaluable and with its help you'll eventually find the best therapy mode for yourself.

How's you mask doing after all these months? Have you changed it? Is it still sealing properly? What about the machine's filters? Have you changed them as instructed? Any chance the cat (or other animal) got your hose and made minute punctures in it?

You write:Later I was given a prescription for Sinemet (100/25) for the RLS (which is going to be changed something more apropiate). I take that to mean your RLS may not be properly controled - that too may disrupt your sleep and leave you tired.

Have a medical checkup to make sure you don't have new issues cropping up , and don't give up - as you can see, there are many things that can effect the therapy.

Hang in there, and keep us posted.
O.

Guest · Post by **Guest** » Wed Oct 04, 2006 11:32 am

My advice to you would be to see about getting another Sleep Study done (specifically getting a new titration study).
You've suggested several different possibilities that could be contributing to a possible disruption of your sleep.
That will allow both for checking what pressure is best treating the OSA as well as how the medication is treating your PLMD.

Mile High Sleeper · Post by **Mile High Sleeper** » Wed Oct 04, 2006 11:58 am

Spooky, I'm glad you discovered your condition and are taking charge of improving it. Your situation, feeling better and then worse, is not unusual . Many of us have severe apnea and resultant health effects.

I suggest first finding out more about machines, because an APAP with full software will give you the information you need to manage your therapy. See
http://smart-sleep-apnea.blogspot.com/2 ... oices.html

You're on the right track to be questioning your pressure settings. See http://smart-sleep-apnea.blogspot.com/2 ... tings.html

I don't recommend mouth taping as a quick fix for leaks; if you ever need to breathe through your mouth because your nose doesn't work, it's dangerous! For more on masks and leaks, see http://smart-sleep-apnea.blogspot.com/2 ... oices.html

Also check out http://smart-sleep-apnea.blogspot.com/2 ... at-is.html
I was in the frustration and basic treatment stages for a long time before things got better, but they do get better, perhaps in small steps, gradually - as long as you keep making necessary improvements in your equipment.

Hang in there and keep using the forum for help and support.

SpookyFodder · Post by **SpookyFodder** » Mon Oct 30, 2006 6:03 am

Hi folks thanks for the replies. Sorry for taking so long to respond but I had computer problems (blew 2 capacitors on my motherboard) and was waiting for the warranty replacement.

Here is what I have done/discovered. First off I discovered a tiny leak in the hose and have replaced it. Although my cat denies any wrongdoing I suspect she is responsible for the hose leak. The filtres have been replaced on schedule and the machine is working fine. The mask seems to be in good shape. I have also contacted my sleep doc (or rather his secretary) and I guess I'll see what he has to say.

Would a full face mask work if in fact I am mouth breathing? Is there any serious downside to using them. I honestly do not like the thought of taping and would rather try a full face mask instead.

I have thought about xpap but I honestly cannot afford one. I would be interested in seeing the results of the monitoring software. Eventually I'd like to get one but I need to get off disability first.

I have been taken off the Sinemet by my GP because he feels that it not appropriate to take with my heart condition and the associated medication.

I am in the middle of a major sleep jag so I am sleeping insane amounts of time. My apologies for any vagueness.... I have been feeling somewhat vague as of late.

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CPAPopedia Keywords Contained In This Post (Click For Definition): hose

Julie · Post by **Julie** » Mon Oct 30, 2006 6:28 am

Hi, FF masks are designed specifically for mouth breathing (along with the nose), but are sometimes hard to fit well - leak issues, etc., so make sure you get a good trial before buying (the Resmed Ultramirage FF is popular, but a new Fisher-Paykel one is also supposed to be good - the 432 (there's an older 431 out there too). I would also check with your regular MD though to be sure there are no new incidental cardiac issues.

Missy · Post by **Missy** » Mon Oct 30, 2006 6:37 am

Spooky Fodder-Sorry to hear you're discouraged. I would check your mask situation and figure out if you are indeed mouthbreathing. The full face mask or taping would both be an option. Also, you need to figure if you have the right machine for your apnea treatment. You might also need to give yourself more time for improvement in how you're feeling. I had the "honeymoon" period of immediately feeling better for a while, then had a downswing that really threw me for a loop. I got really discouraged! I have finally found what works best for me as far as mask, pressure, taping, sleep hygiene, etc. and have now been consistently logging AHI's at or below 1.0 for the past month. It can be done. Don't give up!

Best wishes,
Dawn

littlebaddow · Post by **littlebaddow** » Mon Oct 30, 2006 7:46 am

SpookyFodder wrote: I have also contacted my sleep doc (or rather his secretary) and I guess I'll see what he has to say.

I think this is an important part of your response. You will get lots of good advice, help and support in this forum and become better informed as a patient which may help you establish a good dialogue with your sleep doctor.

Many people in this forum (me included) manage their own treatment without a regular interaction with a sleep doc, but those who can strike up a good rapport with their doc do seem to benefit from it.

Please do persevere with the treatment. To a greater or lesser extent, we can all understand how difficult it can be to think rationally and keep going when you feel so bad, but there is lots of evidence that it will be worth it.

There are a lot of possible variables and it can take time to get the optimum equipment and settings. A full face mask might help with mouth breathing, but as others have said they can be more problematic with leakage. Personally, I only resort to a full face when I have a cold and the nasal congestion prevents me from using a nasal mask.

Take comfort from the benefit you felt early on. You know it can work, so please persevere until you start to feel the benefit again.

Oh, and don't kick the cat

SpookyFodder · Post by **SpookyFodder** » Mon Oct 30, 2006 9:35 pm

Thanks for all the support and wisdom. It really helps. As for my cat..... she is a little frustrated as it is taking longer to train me than she hoped. Thanks again

Semyon · Post by **Semyon** » Tue Oct 31, 2006 12:34 am

Wulfman wrote:Several possibilities.....
Need to get an overnight pulse-oximetry test done to see if you're still desaturating. It's free with prescription from your doctor.

Wulfman,
Where can I get an overnight pulse-oximetry test? Is it from my doctor or from my DME?

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I Need Help

I Need Help

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