HELP PLEASE!!!

[sleepyme1964]

I have been faithfully wearing my CPAP since early July and I becoming so depressed because I do not feel any better.
I have had 2 sleep studies (differant doctors and hospitals) and been diagnosed with sleep apnea and narcolepsy. I am 48 female and always been very active and 3 years ago my quality of life went down hill. I have been taking Nuvigil for 4 weeks and it does not work for me. I have taken 60 mg of Adderaiel daily before the new doctor changed me to Nuvigil. Adderaiel made me forgetful. I don't know what to do!!! HELP PLEASE

[Hawthorne]

It would help if you would go to the "User Control Panel" ( top of page- left) and put in your machine and mask as you will note others have done. Also, knowing what pressure(s) your machine is set at will help us to help you.

Getting used to cpap can be difficult. People here have been through and can at least share their experience with you.

Keep at it!

[robysue]

Sleepyme,

First welcome to the forum.

Second, can you post your equipment? If you are lucky enough to have a machine that records efficacy data, the data from your machine may prove useful in trying to sort out why you are not yet feeling any better.

Third, as much as you don't want to hear it, it can take time. Yes, you've been using your machine since July and it's now the middle of October. And most newbies see at least some small amount of improvement by the end of the first three months of therapy---if there are no obvious problems with leaks or the pressure not being set appropriately. But a few people are unlucky enough to take several months before they notice any improvement and the first signs of improvement can be very subtle.

For me: The first 3-4 months of PAPing were HELL. I felt much worse with PAP than I had without PAP. But sometime in my 5th month of PAPing I started to notice that I was no longer waking up with hand and foot pain every single morning. That was the very first sign that PAP might be able to make a positive difference in my life. And it took a few more months before I was waking up feeling better with PAP than I had without PAP.

So ....

Can you post your equipment?

And if you have any identifiable problems with sleeping with your PAP equipment, can you describe them?

And can you describe your sleep schedule?

And you say the Nuvigil is not working; that it was prescribed to replace Adderaiel sinc the Adderaiel made you forgetful. Was the Adderaiel working in the sense of helping you remain more alert in spite of the unacceptable side affect of making you forgetful?

[Julie]

FYI everyone - she posted a very similar note on Sept. 28 which K. Teague + Sleeping Ug. responded to a couple of times - maybe take a look there for more info.

[kteague]

Thanks for bringing that to our attention Julie. There are some tidbits of info there that are pertinent to the situation. My main focus would be optimizing CPAP therapy then seeing what symptoms are left to address. Until that happens it is like looking through dirty glasses and wondering why nothing is clear. When multiple things are going on a methodical process of elimination is a good approach. Addressing the known factors can reveal the other issues at play and clarify the best next step.

[chunkyfrog]

Sleepyme, keep up the therapy, but keep bugging your doctor.
Cpap can't always cure everything.

[sleepyme1964]

Thank you all for your replies! I hope to one day be able to repay the favors! I am just so discouraged right now about my whole situation! I spent $2800.00 on an oral appliance that caused TMJ pain so I had to stop wearing it! However I am determined to get my life back.
I have had 3 overnight sleep studies and 2 MSLTs following the last 2 overnight studies. I am on my 3rd sleep doc. and had my last sleep study in September. I had my CPAP on all night and slept 6.5 hours and according to doc I had a normal amount of deep sleep but doc noticed more than normal amount of REM sleep. The pressure setting on my CPAP is a 10 and my sleep doc said that my apnea events were down to a 1 and my oxygen levels were excellent all night. My apnea events without CPAP 23.
MSLT I sleep for 4 naps and had REM sleep in 3 naps (average time under 8 minutes) 2 naps under 3 minutes.
I was off of any medications 2 weeks before the study.
I post my equipment and I also wear a chinstrap because of mouth venting.
Any thoughts?
I really appreciate everyone!

[jweeks]

I had my CPAP on all night and slept 6.5 hours and according to doc I had a normal amount of deep sleep but doc noticed more than normal amount of REM sleep.

Hi,

Was this during your study, or is this a typical night right now? The reason I ask is that 6.5 hours is a little short for a typical night. 7.5 would be better. You want that 3rd REM cycle to happen if possible. Also, are you watching your data now? The reason I ask is that your sleep during a sleep study can be different from how you sleep at home. It is not uncommon to need tweaks to your settings once you get into CPAP a few days and again after a few weeks. Also, at your study, your sleep tech was doing the adjustments while at home, your machine is doing the adjustments. The machine is not nearly as smart as your sleep tech in that the machine is slow to ramp up and fast to ramp down. That can allow it to miss events that the sleep tech would have treated.

Yes, I know that this is a lot to digest, and not feeling well makes it all that much harder to figure out.

-john-

[Pugsy]

Can you get us a copy of the nightly detailed report using either whichever software you might have?
If you don't have the software check out the links in my signature. There are copies of the detailed reports in the tutorial thread.
Just pick a typical night.
Let's see if something stands out.

Is your sleep fragmented? If so how much and how long?
Trouble falling asleep or staying asleep?
Can you answer Robysue's questions please?
We need a lot of information to be able to come up with ideas how to try to help you. So we ask a bunch of nosy questions.
Do you take any meds (even OTC) other than the Nuvigil/Adderall ? If so..name, dosage and time of dose.
Also..the Nuvigil what dosage and when do you take it?

[sleepyme1964]

I will answer any questions that may help with this CPAP journey.
I do not have the software for my CPAP machine yet, as soon as I do I will share that information.
The biggest problem for me when I began wearing my CPAP nightly was the headgear being tight around my neck and the air drying my eyes out. I would tense up my shoulders and woke every morning with neck, should pain. I tried wearing the nasel pillows with the Bella loops around my ears, but I can't stand the pillows blowing air directly in my sinuses.I am currently wearing the wisp mask and I have been doing fairly well with it. My sleep doc prescribed Ambien so that helps me sleep with CPAP.
My daily morning medications are Cymbalta 60mg, Wellbutrin 150mg, Lasariton (blood pressure med), and Nuvigil 250mg. I take the Nuvigil about 30 minutes before I have to get out of bed and get ready for work. I take the Ambien around 9:30 at night and sleep from 10-4:30, I usually stay in bed til 5 or so. I don't feel well in the mornings at all. The Nuvigil was prescribed to replace the Addaraell. The Addaraell did keep me awake but I was forgetful and around 4 everyday I was ready to sleep. My body was tired.
I used to wake up and go to bathroom serveral times a night, but since I have been wearing CPAP I only go once if that.
So I am sleeping all night average time 6 to 7 hours and I usually don't nap during the week, but I am always just wanting to lay down and sleep.
I hope I remembered to answer everything and I really appreciate any thoughts.

Sleepyme

[Hawthorne]

I think you could download "Sleepyhead" software for that machine. It is free and developed by a member of this forum. Many of us use it.

I am pretty sure Sleepyhead will work with your machine. People will correct me it I am wrong about that.

[Pugsy]

I think you also need to take a hard look (and talk to you doctor) at the meds you take. Both Cymbalta and Wellbutrin have common side effects of fatigue and Wellbutrin is also known to mess with sleep quality.
I am not saying that they are the only problem but they can sure make it worse.
Do some serious research as to all the possible side effects that all your meds have. Talk to your doctor about the potential of the meds contributing to your issues.
Do get the software and let's see if therapy itself is optimal. There might be something there too.
Often there's more than one piece to the puzzle to figure out and put together to get some answers.

[jweeks]

I tried wearing the nasel pillows with the Bella loops around my ears, but I can't stand the pillows blowing air directly in my sinuses.I am currently wearing the wisp mask and I have been doing fairly well with it.

Hi,

This problem is pretty significant, but I think it has a solution. This is a matter of camping out at your DME until they find a mask that works for you. I know how irritating air in the eyes can be. It nearly drove me insane. I found all kinds of issues with air, and finally found mask nirvana with the Swift LT. Like you found out, a nasal pillow mask takes some getting used to, so it might be better to go full face or nasal mask for a few months, then maybe to a hybrid before taking the full time leap into nasal pillows.

The big question here is where the air is coming from. It could be leaking out of your mask. If so, the a different mask or a better fit on your existing mask is the best answer. It could be air coming out of the mask exhaust port. If so, then a different mask design that pushes the air in a different direction is the answer. The third possibility is that the air is leaking out of your ear ducts in your eyes. This is the hardest one to confirm, but there is a solution for it. Your eye doctor can put plugs in your tear ducts that will keep the air from blowing out into your eyes.

I used to wake up and go to bathroom serveral times a night, but since I have been wearing CPAP I only go once if that.

This is rock solid proof that your CPAP therapy, while not yet perfect, is actually working. You see, when your body gets dangerously low on oxygen during sleep, it wants to force you to get up. It does that by sending a chemical signal. That chemical signal is the same one that tell you that you have to go to the bathroom. That turns out to be pretty effective. It also makes your kidneys work overtime as well as getting you out of bed. You really don't want to be doing that over the long run. Since you are now getting up far less often, you know that your oxygen levels are not dropping dangerously low very often. In fact, as your therapy gets dialed in more, you might not get up at all any more. I used to get up every 60 to 90 minutes all night long. Now, on CPAP, I don't get up at all. If nothing else, CPAP is a great cure for night time trips to the potty room. Not to mention keeping your oxygen levels high so you don't cook your brain, have a stroke, or have serious heart damage.

-john-

[SleepingUgly]

6-7 hours of sleep may not be enough. For me it would be sleep deprivation, which can't be completely eradicated by medication or CPAP, even in someone who doesn't have narcolepsy.

Does the Nuvigil last you all day?

When you were on Adderall, was it immediate release or extended release, and how many mgs?

If I remember from the other thread, you don't have cataplexy, right? Did your doctor ever try you on Xyrem?

[robysue]

My daily morning medications are Cymbalta 60mg, Wellbutrin 150mg, Lasariton (blood pressure med), and Nuvigil 250mg. I take the Nuvigil about 30 minutes before I have to get out of bed and get ready for work. I take the Ambien around 9:30 at night and sleep from 10-4:30, I usually stay in bed til 5 or so. I don't feel well in the mornings at all. The Nuvigil was prescribed to replace the Addaraell. The Addaraell did keep me awake but I was forgetful and around 4 everyday I was ready to sleep. My body was tired.

So waking up by 4:30 or 5:00 is necessary for work. Is there a reason that you stay in bed after waking up at 4:30? Do you take the mask off and sometimes fall back asleep for that last half hour in bed?

Do you go to bed immediately after taking the Ambien at 9:30? What was your latency to sleep pre-CPAP? And what's the dose on the Ambien? Any chance the "not feeling well in the morning" is an Ambien-hangover? Do you feel better an hour or two after you get up for the morning? Do you feel better by lunch time?

Also, do you keep to the same sleep schedule on your days off?

Finally, how many times do you think you wake up during the night in addition to the one bathroom break?