RANT - Sleep studies, provigil, idiot doctors

[HelpMeBreath]

I don't get it. I am going in for another sleep study this weekend. A year has passed and I can get my insurance to pay for a portion of it. I have gotten my numbers at a decent level, consistent AHI of about a 3. I have gone through several masks, all of them destroy my face, finally got the cheap one from zzzzzz something or other, oddly enough, it actually works the best as far as not causing me to break out all over the bridge of my nose, but it leaks.

I wake up constantly throughout the night, I am beyond exhausted, seeing patterns on the walls, eyes watering, I cant read more than a page or two without nodding off into this weird half-sleep at my desk. I start to dream immediately. It is wrecking my life, no energy, no productivity, completely inconsistent and by the time Friday comes, I can barely function. The weekend is spent on the couch.

I can just feel my body atrophying from lack of exercise and my career could easily slip away. I have a 4 day marketing seminar in Chicago at the end of the month, will anyone want to do business with the guy who cant stay awake through any of the presentations?

But no Provigil for me, nope. 3 doctors - won't prescribe it. I am SO tired of having to explain that I know my body and the way I feel. This isn't tired. I'm not sleepy. I am EXHAUSTED. I am also realizing that I am starting to not care, like I am watching my life from outside my body. Small problems seem like the end of the world, or sometimes, nothing matters at all.

I took half an adderall this morning that I got from a friend, because I knew as soon as I woke up that I might not make it through the day. It made me jittery and axious, and I am still falling asleep.

I am an internet marketing manager. I also am trying to start a company with some other people who seem to have endless energy. I can only explain away my inconsistency for so long before they get sick of waiting for me to figure it out.

I even have my Doctor on Facebook. I told him we need to get to the bottom of this issue immediately, I told him I wanted to explore Provigil, he said "Lets see what this next study says". My Uncle is a Dr., he knows me and my history better than anyone, still no Provigil.

My last sleep study was so bad, they gave me another one for free because I couldn't sleep long enough to get any readings, then after the second one, they put my on a bipap and the settings were SO far off it was incredible. Thanks to this forum I am now on 15/14. I was at 18/12, and I am still making payments on the $1600 plus the additional $1500 for the bipap that my insurance wouldn't cover.

Aside from the actual prescription for a bipap machine, the medical professionals have done nothing for me. My girlfriend was the one to tell me I had sleep apnea, and DSM was the one who actually helped me get my settings adjusted. I am a little concerned that there might be something wrong with the machine, or that I somehow damaged it, the humidifier is all the way up but there's never any rain-out, maybe I screwed it up while messing with the settings, but I am behind on my payments so before we can discuss that, "we have to figure out this bill". I can't even think about what they would say if they knew I was making my own adjustments.

I live in Milwaukee, where anyone can walk into a doctors office, fake a back injury and walk out with 100 oxycontins and just as many xanax, but for some reason, no one wants to get near Provigil. I considered buying it online, but I can't afford to get ripped off right now.

Sorry for the outburst. I am at that point you get to right before you collapse from exhaustion, I know you have all been there, nothing makes any sense and everything just makes you want to cry or punch someone, or both.

[georgepds]

"I am still making payments on the $1600 plus the additional $1500 for the bipap that my insurance wouldn't cover. "

A little off-the main concern here, but you can buy a Respironics series m bi-pap ( compatible with the recording software) for ~$500 on cpap auction. You might want to consider that route to control costs

--G

[HelpMeBreath]

When I need another one, which I might, then I will. This is not a rental issue, this is a - I bought it and have to pay what the insurance didnt. I wasnt informed at the time and didn't know about this website or the sleep apnea community in general. I won't make the mistake again.

[HelpMeBreath]

Actually this brings up a good point. The machine I was told to get was the VPAP III. What is comparable to that? Is there a reason I would have been told to get this machine over a different one or do certain places just have brand loyalty. I guess my question is, why would i be told to buy a $2000+ machine when I see some for under a grand, I always assumed it did something that the others did not.

I am hoping to start this whole process over this weekend. New sleep center, new doctor. Now that I am used to the machine I assume another study will be much easier to tolerate.

[SaltLakeJan]

Hi Helpme;

With your exhaustion it makes it hard to deal with the worries and physical problems you have. You are so sleep deprived, its probably hard for you to think clearly. I have a thought for you to consider. Like you, I had such exhaustion I wasn't dealing with my job, or anything else. I was recovering from an 8 month serious illness and got Fibromyalgia.
I wasn't doing important things at home and on the job. With Fibromyalgia you have exhaustion, fatigue, muscle pain, little or no sleep, mental fog, and a bunch of other stuff.

Prior to getting sick, I had a 5 day a week exercise program, but through the 8 months I was recovering from surgery, I was on big time antiobiotics, then the fibro. , I thought I couldn't do one more thing. The exhaustion got so bad, I realized I had to do something to help my body. I walked - no, I dragged my body up the street for 1/2 block, I did the same the next night, and again. Within a week, I started to sleep - not the whole night, but soon I did. I didn't solve all my problems, and because of the Fibro, my body hurt from just walking - but it helped my general health, and my mental and emotional state.

This may be more than you can do - I feel for you and suggested the one thing that helped me. Within a month I started a swimming program, which was easier on my body. The more I did physically, the more my sleep improved. Let the forum know how you are doing. The very best to you. Some of the long time members, may have better answers for you.
Jan.

[jda1000]

Rant away - it feels good, and believe me, I am certainly not the only person here that understands the exhaustion, and the frustration with DMEs and physicians....

I had started a rather aggressive fitness program about a month before my diagnosis and three months before starting CPAP; I missed much of January, because my initiation into CPAP seemed to make me MORE tired, before I started feeling better. I agree with Jan on the benefits of exercise - but it's not easy when already so sleep deprived you can hardly function.

I do not believe my MD has any real grasp of the mental-function impact of sleep deprivation. I didn't understand it myself until my sleep began to improve...Carbonman a few months ago had a post on here entitled, roughly, "Newbie: Your Brain is Toast," which was pretty good reading and very accurate....

[jda1000]

Rant away - it feels good, and believe me, I am certainly not the only person here that understands the exhaustion, and the frustration with DMEs and physicians....

I had started a rather aggressive fitness program about a month before my diagnosis and three months before starting CPAP; I missed much of January, because my initiation into CPAP seemed to make me MORE tired, before I started feeling better. I agree with Jan on the benefits of exercise - but it's not easy when already so sleep deprived you can hardly function.

I do not believe my MD has any real grasp of the mental-function impact of sleep deprivation. I didn't understand it myself until my sleep began to improve...Carbonman a few months ago had a post on here entitled, roughly, "Newbie: Your Brain is Toast," which was pretty good reading and very accurate....

[SaltLakeJan]

To: Help me and jda1000

Sleep deprivation is something else. I agree with jda100, most conditions can be described, but I have no way of explaining how I feel when I am sleep deprived. It is one of those situations where if you haven't had it, you don't realize what it does to your entire body. It affects your personality, your I.Q., your ability to cope. It affected every move I made, and thought I had. I feel for Helpme.

[rested gal]

Actually this brings up a good point. The machine I was told to get was the VPAP III. What is comparable to that?

VPAP is ResMed's trademark name for their bilevel ("bipap") machine. Respironics tradmark name for their bilevel machine is Bi-PAP. Since Respironics came out with bilevel technology first (in the "cpap" world), their name for their bilevel machine has become a generic way of referring to any manufacturers' bilevel machines. Kind of like how we often refer to all facial tissues as "kleenex" and call all lip balms "chapstick." Those are brand names, just like Bi-PAP is. However "bipap" has become a general-use word for what are properly called "bilevel" cpap.

Bi-PAP is Respironics bilevel machine.
VPAP III is ResMed's bilevel machine.

Is there a reason I would have been told to get this machine over a different one or do certain places just have brand loyalty.

Perhaps one manufacturer gave the dealer -- the home health care store -- a better "deal" (more profit for the dealer) if they purchased in bulk or carried that brand exclusively. Or it could be that the dealer (the home health care store) or the doctor actually does prefer one brand over another for any number of reasons that might, or might not, have nothing to do with "treatment." Also might just be the brand name they are more familiar with through visits by the company sales rep.

I guess my question is, why would i be told to buy a $2000+ machine when I see some for under a grand, I always assumed it did something that the others did not.

Not really. Both Respironics "Bi-PAP" and ResMed's "VPAP III" use one pressure for inhaling and a separate lower pressure for exhaling. Both are "bilevel" machines. There are some minor differences in features and settings, and possibly a difference in workmanship, but they both do essentially the same thing -- provide "bilevel" treatment. Both are "bipaps." Puritan Bennett and DeVilbiss also make "bilevel" machines.

[kteague]

HelpMe,

Your level of desperation to stop the downward spiral is familiar to many of us. As bad as you feel, I can't help but think there's got to be SOMETHING identifiable causing your symptoms. Let's hope this next sleep study provides the answers you need. Have you asked the doctor to provide a pill to take with you to help assure you sleep more this time? Also, maybe you could ask in advance if you could bring your machine to the study and if they could just check that it is blowing at the pressure it is set at.

Hope you don't mind me thinking out loud for a bit. Does your machine have a ramp and are you using it? If so, please tell me that you are not hitting the ramp all those many times you wake up each night. That alone nearly killed me early in my treatment. My ramp was set at 4 for 30 minutes, and I hit it many times each night, some nights maybe as many as 15 or 20 times. But even if only 10 times, that's theoretically 5 hours of subtherapeutic treatment, but I rarely made it thru the ramp time without snatching the mask off.

Have you had your oxygen levels checked overnight during all this time? While your AHI is considered acceptable, Is your time in apnea low also? Several months ago I had a night with only one apnea, but my time in apnea was 58 seconds. ARGH!

Has your girlfiriend mentioned you having any limb movements during sleep? They can be real disruptors of sleep architecture and leave one worn out in the morning.

Are you on any meds known to be disruptive of sleep? Has your thyroid been tested? I think if this sleep study doesn't answer your questions, I'd ask the doc to give me two lists - one of everything that can disrupt sleep, the other of everything that causes daytime sleepiness. Then go down the lists and methodically rule each out.

Hopefully this sleep study is as far as you'll need to take it.

Kathy

[DreamDiver]

finally got the cheap one from zzzzzz something or other, oddly enough, it actually works the best as far as not causing me to break out all over the bridge of my nose, but it leaks.

The first thing I learned from the many very smart people here when I joined this forum is to check for leaks. If you're leaking, you're not getting therapy. You can have the best machine in the world, but if your mask isn't delivering therapy, you need to look for either a better mask, or figure out how to keep the mask better sealed against your face to reduce leaks.

Also, if your face is in any way oily or sweaty as you sleep, you'll probably find that the nasal prongs will leak some as your face relaxes and the prongs torque away from your face.
Wash the mask to remove facial oils in the morning when you go to work so they're dry and oil free at night.
Cinch it tighter to stop the leaks.
Consider getting a papcap to reduce muscle relaxation torque.
These things will reduce leaks enough for you to allow the wakeful portion of your subconscious to actually relax enough to stop paying attention to whether your mask is leaking. Then you might actually get some more sleep.

Also, the key may be less about finding out how to stay alert during the day (various prescription drugs), and more about how to move into deeper, more restorative sleep during the night.

This is from someone who has been facing very similar issues. Keeping hanging in there.