Not getting any better

[kitkat]

I complained to my doctor that over the last 5 years my energy levels kept decreasing to the point that I cant be bothered doing the things that I enjoyed. My memory is terrible and my concentration is just as bad. When he suggested that I might have sleep apnia I was in denial as I did not have the symptons of falling asleep during the day. Anyway sleep studies confirmed his suspisions. I have been on the apnia machine now for 6 weeks and dont feel any better and sometimes worse. How long is my recovery going to take? I would be interested to hear from past sufferers with their experiences. Thanks.

[DreamStalker]

Some are very lucky and recover after the first night (like myself). Others are less fortunate.

The docs generally do a great job of diagnosing ... but then drop the ball on treatment by letting DME and RT folks to deal with that. Most just hand you a mask, a machine, and some basic instruction for how turn on/off and clean stuff and then expect you to go home and sleep with it.

This treatment requires that the patient take control of both monitoring and managing the treatment much like a diabetic patient. You need to educate yourself about your condition and the equipment options and settings.

Most often, the patient/victim is given a mask that does not fit properly or one that does not prevent system leaks from the mouth. Other times, the machine is just plain set to the wrong pressure(s). Start by reading the stuff under the yellow light bulb up at the top of the page then ask lots of questions ... in time you will get your life back. Also, fill out your profile ... and welcome to the forum.

Best wishes!

[Snoredog]

my suggestion:

1. Go to Control Panel upper left and fill out your machine profile so we know what kind of equipment you have.
2. If you haven't received a copy of your PSG results ask for them at your next doctor visit. That PSG may contain
more information than you were given by your doctor. Some may be reluctant to give you a copy, but by law
it is your right to a copy of all your medical test results and findings (in case you need to go for a 2nd opinion etc.).
3. We need to know what was seen on your PSG (mild, moderate, severe OSA, any limb movement, RLS etc.), also
knowing if your OSA included any Central Apnea or CA on the report.

Knowing the type of the machine you have tells us if it is capable of displaying data on the LCD. That data can help
you understand where you are with therapy. If pressure isn't high enough AHI will be higher. If mask leak is causing
your therapy to suffer it will show up as a higher leak on the machine.

Also depending on the severity of your OSA it may take a while before you start to feel more energy and feel better. It took
years of OSA to get you feeling bad it takes a while to recover. To make sure that is on track, it helps to know
by machine provided data where you are at, because if your AHI remains high you will slow that progress.

At a minimum, you should make sure you get a machine that is data-capable and displays not only compliance info but sleep data such as AHI, Leak and Pressure. Most Autopaps do.

[nate fry]

This is probably not your imagaination at all. It can take seveal months to get the full benefit of cpcp. Most doctors have not used cpap. They will tell you what they learned at school, a book or conference. The very most importnat thing is that your mask does not leak and that you have the correct number for your mask. So doctors give you a so-so sleep apenea test when you bring a device home at night. Those are crap. When you goe to a sleep study center they watch you all night. After they see how bad it is they strap on a machine and play with it the rest of the night. The most important thing I think, I am not a doctor is oxygen satuarion. The amount of oxygen in your blood. If it is too low it is like sraving your organs. But this test does way more. They watch your brain waves and can tell you exactly hoe=w much time you are in each range of sleep. There is 4 ranges and range 4 is rem sleep where your body repairs itself. If you are not in that range long enough per night you will feel like crap. Any way I have 13,00 hours on my cpap and just decided to have all the operarions. I can't believe I waited 6 years. My doctor said since I have severe apnea I would always need my machine although the number would be lower. But I haven't used it since the 21. I feel like I have been reborn. Good luck to you and if you have any questions and I think I can help I would be more than happy to reply. nate

[txnative]

my suggestion:

1. Go to Control Panel upper left and fill out your machine profile so we know what kind of equipment you have.

Do as I say, not as I do???

[DreamStalker]

my suggestion:

1. Go to Control Panel upper left and fill out your machine profile so we know what kind of equipment you have.

Do as I say, not as I do???

Some of us have already found our optimal masks and machine settings ... we don't have a need for others to know our equipment or settings.

[txnative]

[quote="DreamStalker

Some of us have already found our optimal masks and machine settings ... we don't have a need for others to know our equipment or settings. [/quote]

What you may not realize is that it helps newcomers to see what mask/machines are used by the "old timers".
I would never presume to try and help you.

[Pineapple]

kitkat,

Is it just that you're still tired, or are you not seeing improvement in any of your symptoms?

This is not an immediate gratification therapy. It takes time for most people. I started seeing the whispers of improvement a little after the 3rd week - I'd wake up knowing I had gotten some sleep that night; didn't go to the bathroom as much during the night; the pain in my legs decreased; the headache went away - I would think that at 6 weeks you should be seeing some of these baby steps at least. 8 months in I still am dogged by fatigue but it is not at the level it used to be. I've heard from others the tiredness is the hardest one to get rid of.

As the others mentioned, mask leaks are the number one suspect in failing therapy, give us you equipment and maybe we can help you pinpoint your problem - or at least give you some new questions for your doctor.

[DreamStalker]

Some of us have already found our optimal masks and machine settings ... we don't have a need for others to know our equipment or settings.

What you may not realize is that it helps newcomers to see what mask/machines are used by the "old timers".
I would never presume to try and help you.

It would not help newcommers because each of us have unique requirements/preferences for masks, machines, and settings.

If you are just curious you are always welcome to just ask ... Dx w/ AHI of 102, OA = 99 and O2 sat of < 60%.

I use the following which works well for ME (long-term AHI = 0.3, OA = 0.0, HI = 0.3, leak rate ~ 35L/min, and %O2 saturation ~ 96%):
M series w/ AFLEX; set @ 10.0cm. min and 14.0 cm. max w/ AFLEX on 3 and equivalent 11.5 cm 90%-tile pressure value for occasional CPAP mode
HC-150 stand alone heated humidifier set on about 2.5
Swift LT size large pillows (primary mask interface)
Liberty size large with large pillows (only for backup for sinus congestion ... no congestion since pre-cpap)
Some homemade microfiber felt hose wraps
Plastic keychain coil (to manage mask hose above head)
High quality memory foam bed pillow
Grossan nasal irrigating system (once/week or as needed)

[kitkat]

Thanks guys for your support. I have a very good technician who also has sleep apnea. He has recommended to me the Resmed auto machine which according to the recorded information has been working beautiful for me. My sleep specialist had specified a pressure of 9. However the machine fluctuates between 5 and 10 according to my needs.I think that I have to give my body time to recover from the shock. Kitkat.

[Paul56]

Thanks guys for your support. I have a very good technician who also has sleep apnea. He has recommended to me the Resmed auto machine which according to the recorded information has been working beautiful for me. My sleep specialist had specified a pressure of 9. However the machine fluctuates between 5 and 10 according to my needs.I think that I have to give my body time to recover from the shock. Kitkat.

So you were titrated at a pressure of 9 during your sleep study?

It also sounds like the range of your machine has been set to 5 - 10... is that correct?

If it was me... I would bump up that minimum pressure to 7 and the max to 15. Then I would leave it like that for at least a week and accumulate some data to see what the results are. You can record some good information right from the LCD on your machine. Setup a spreadsheet and record usage hours, 95th percentile pressure, leak, AHI, AI & HI for each night. If after a week I was still getting too many apneas on a regular basis then I would bump the minimum pressure up another notch to 8 then record the data for another week.

The first item to check on your data are your leaks... if they are out of control then the other recorded data will be meaningless and you need to concentrate on getting your leaks under control.

I've just gone through that process with my machine & settings listed below.

[rested gal]

If it was me... I would bump up that minimum pressure to 7 and the max to 15.

I agree with Paul and with the rest of what he said in that post. Especially about how important it is to know if leaks are under control.

kitkat, even if cpap treatment is optimized and is doing its part of the job perfectly -- keeping the airway open so you can breathe well during sleep -- there's always the possiblility that other health problems or even sleep hygiene issues can continue making a person feel sleepy, tired, or fatigued. So, even if cpap is doing what needs to be done like a champ and helping avoid further damage to many organs, there could be other health issues causing you to not feel good yet.

Also, if a mask is not comfortable or is not allowing a person to sleep in their favorite sleep positions, that can be interfering with "sleep." Dig into the message board to look for tips to tweak every comfort issue that you might have with the mask or the machine.

This really is a crazy, strange new way to try to go to sleep each night...wearing a mask... so the more "comfy" you can make your setup, the better. It is not unusual at all for many people to even feel WORSE for awhile using cpap than they did before -- simply because of the equipment.

Mask issues in particular can cause "arousals" -- getting jolted out of whatever stage of sleep a person is in, without actually waking them up to be aware of it. Arousals from equipment issues can interfere with getting refreshing sleep just as surely (but not as dangerously) as the apneas that were causing other kinds of arousals every night before starting "cpap." CPAP treatment can be a trade-off -- trading the dangerous apneas that disturbed sleep before getting cpap, for comfort annoyances now that can still disturb sleep. Either one can leave a person feeling sleepy the next day.

Don't forget to work on every sleep hygiene matter you can think of. Even a worn out, saggy old mattress can cause disruptions to sleep that you "sleep through" without knowing it. A pet jumping on and off a bed can do it. A bedroom that feels too warm, a tv left on ...the list can go on and on.

If a person has acid reflux and is not treating that well, that can cause arousals during sleep, or even interfere with getting effective cpap treatment in some cases.

There are soooo many pieces to the puzzle, but going at it piece by piece will get you there.

Do stick with cpap and work on comfort issues that will help you get used to it. CPAP is not a magic bullet for every "sleepiness" problem, but it is absolutely essential to take care of one extremely important problem...being able to breathe well and have our oxygen levels stay up while we sleep.

Here's something another cpap'er nicknamed Perry once wrote. I think of it as the "mental zest" post:
viewtopic.php?t=6234

[echo]

Restedgal, you really are a precious gem!! Thank you for your own great post and that post from Perry! I think many of us in the forum just know that we are not in the mental zest stage, yet everyone from our doctors to our family and friends say it's just age, or this or that, when we know we can be better! Thank you!! I am going to print that out and read it for encouragement!

After about a year, I am still bouncing somewhere in between "Basic treatment" and "advanced treatment"... But Perry also has a great point with this statement: Proper diet, nutrition, and exercise are also required to keep you at the Mental Zest stage. For me, once I've started to go past the "Basic treatment" phase, I've found that I've recovered just enough energy to start exercising (a little bit), and plan my meals better. This is just the opposite of a downward spiral: once you start improving in one area, you start having more and more energy to improve the other areas, and those improvements allow you to have even more energy to take care of yourself even more. I think "positive thinking" also falls into this category - when we start noticing small improvements, our attitudes (towards life, towards ourselves) also get better and encourage us to do more for ourselves (better lifestyle, sleep, food, exercise). So yes, there is definitely a light at the end of the tunnel (and no it's not an oncoming train )!