Feeling Abandonded- How much contact w/sleep dr. is normal?

[aktn23]

Hi, I'm new to the forum. The following question sounds ridiculously stupid, and whiney, but I'm asking anyway.

The short version of my question is: How much follow up are you supposed to have after your sleep study? Who do you go to for ongoing sleep problems after you've been using CPAP therapy for a while (in my case several years)?

Now here's long version: After the initial sleep study, I think I had one follow up visit. My Sleep Dr. knew her stuff, but was not easy to converse with or ask questions of, very nice but spoke very fast. I didn't feel like any questions I asked were answered in enough detail. Maybe it was just not a good fit of DR-Patient. Either that or my expectations are way too high. After about 6 months her office even told me to quit calling them for refills on a prescription they provided and was told that I needed to have my regular M.D. start prescribing it. Which gave me a definite signal of "don't bother calling us, we're done with you".

I am about 3 years into this and I did sleep better at first, and there are some nights when I still do. But the past number of months i am more consistently not sleeping well. I have tried a couple of different masks, etc. I realize it is an ongoing process, but who should I be turning to for help with some questions? I feel abandonded! Which I guess is why this forum exists.

How do I know if the therapy is working for me or if my pressures are actually helping me? I have lost 20 lbs since my sleep study. Is there a point (like after the next 30 or 40 come off) at which I should be re-evaluated to be sure pressures are still correct? I have been reading a number of posts and there is so much here I have never heard of, so many things that it seems like i could or should be monitoring and don't. I had no idea you could monitor your own pressures, and is it something I SHOULD be doing. I was sent to a local provider/supplier of CPAP equipment and he fitted me with a mask and I was given no choice on the machine. I was told they would be checking my machine at intervals (can't remember if it was yearly or what) to check the number of hours used. I believe I have only received one of those calls. (I use a Remstar M-Series Plus. It seems good. Not as quiet as they make it out to be, but tolerable if I use the ramp when first going to sleep).

I know that sleep issues can be complicated, and I believe mine are probably a mish-mash of pre-menopause, back and hip pain, and of course the apnea. Also, (and I have read similar comments elsewhere on this site), it just never seems like everything works 100% every time. The slightest sound out of the ordinary from the machine (whistle from the mask, the sound of the air changing pressure in and out, etc.) will distract me and keep me awake. And in the middle of the night, there's only so many times you can turn on the light to check to see what is causing the problems before your poor spouse has had enough! Ok, sorry about that whiny little rant!

So - who does one see for help beyond the initial sleep test? Is the sleep specialist a resource for ongoing sleep problems beyond just the sleep study? Or should I see the equipment provider, who says they are there for my questions ? (Even if I have stopped ordering my stuff from them because they are more expensive).....Or my regular doc, who knows nothing about sleep apnea? I need help! I'm getting worn out from sleep deprivation.

I'm curious to know if the treatment I received is standard operating procedure or if I should try another sleep specialist??? I think I mostly just need help tweaking things and some info to help me know what's normal and not to get me on the path of a better night's sleep. Or to find out if I have other issues that are causing the sleeplessness!

Thanks for listening and i hope to glean some pearls of wisdom from somebody out there!

[cflame1]

Check under the yellow lightbulb for a lot of wisdom.

hmmm... depends on your sleep doc. Mine wants to see me once a year (more if there are problems). 20 pounds is enough that your pressure may not be right anymore (and with your Plus there's no way of knowing for sure with out going back to the lab).

Where do you come for help? ... here's a good place.

[rested gal]

hi aktn, and welcome to the board.

As cflame said, this message board is the best place to come for help because.... this, too often, is the norm:

I feel abandonded! Which I guess is why this forum exists.

I think most sleep doctors figure their job is finished when they prescribe "CPAP." You're then handed over to the not-always-tender care of the "DME" (durable medical equipment provider -- the home health care supplies store.)

Unfortunately, too many DMEs figure that no news is good news, so if a person doesn't go back to the DME when problems arise, you may never see hide nor hair of doctor or DME...or anyone interested in how your treatment is going... again. That would make sense except for one thing -- most people prescribed "CPAP" assume that what they've been given is all there is, or is exactly what the doctor ordered. In a way, it is what the doctor ordered -- "cpap" set at _ pressure. And if the DME says, "Here's your mask", most people would think, "ok, I guess this is what the doctor ordered." The doctor and the DME are the experts, right?

There are a lot of "cpap" dropouts, though, and lack of SUPPORT by way of regular followup contact by the DME is the #1 reason for dropouts, imho. That, and discomfort with the mask. You've done an amazing job, aktn, by sticking with it for three years despite being set adrift, and by researching it now when things aren't going so well for you, and finding your way to this message board. Good for you!

As you've seen from the reading you've done already on this board, many people here are very much into monitoring their own treatment and tweaking it themselves. The Plus machine you were given doesn't provide any tools for monitoring it yourself...doesn't provide any AHI or leak data. If you can afford to buy another machine out of pocket, that would be good to do. If that's not possible, you can still do some pressure tweaking yourself to see if a different pressure (usually increasing it a cm or two) might help you feel better. Even with some weight loss (congratulations on that!) it's not necessarily a given that the airway will need less pressure to hold it open. That's often the case -- significant weight loss = less pressure needed. But normal aging processes are going on, too, which could be making for more laxity -- gravity dropping relaxed tissue that might need more pressure despite weight loss. Anyway, there's no way to see what's going on with a "Plus" machine.

Machines that can provide the kind of data that's more helpful than the "hours of use" a Plus records, are often for sale at fairly low prices on cpapauction.com or on a Craig's List if you have that in your area.

If you'll register for this message board so that people can send you a Private Messages, I'll be glad to PM you some info about how to get a free PDF (scanned copy) of the "Provider Manual" for your machine.

You mentioned "back and hip pain." Pain can certainly interfere with getting restful sleep. And some pain meds could mess up good sleep architecture. Pain or side effects of meds could keep you from getting sufficient time in the sleep stages.

Is the sleep specialist a resource for ongoing sleep problems beyond just the sleep study?

Should be, yes. Some doctors are better than others, though, so if you have the feeling your sleep doctor has washed her hands of you, then you might want to look for a different one. Since it's been three years from your initial sleep study, perhaps your insurance would reimburse for a new sleep study if a new doctor wants to start over from scratch with you. That would probably be a good idea, if you can find a new sleep doctor. Even if CPAP is doing its part of the job perfectly, there may be other health issues interfering with your sleep (I'm still thinking about the back and hip pain issue.) The right sleep doctor could be helpful in looking at the whole picture of what's going on with your sleep.

Good luck. Keep reading and keep asking here. You definitely came to the right place.

[track]

The easy solution is to get a machine that gives you data and then bring the data hear for comment if you don't already know much about AHI. A few of us have NEVER been to a sleep doc but with software that gives us our readings we manage our own treatment. It's the only way to go. You can buy a machine on cpap auction or on craigs list for as low as a 100 dollars.
As for the leg and back pain assuming it isn't dibilating to the point you can't function....who doesn't have pain...especially the older you get. It goes with the territory. As my wife tells me when I complain about my back hurting.." we all have our crosses to bear"

[TheDreamer]

I have never met my sleep doctor, and probably wouldn't have paid attention to whether one existed ... except that because of this forum, I pay more attention to the pieces of paper that I've given. And, I saw a name that I didn't recognize on one of the insurance forms...and his time was billed the same day as the sleep study.

I certain feel all alone here...and I don't know where I'd be if it weren't for all the wonderful people I've met on here.

I got a post card on the local awake meeting the day after I was consulting with a mental health professional and wondering if there was a support group in town (he didn't know of any, but I had responded the Sleep Apnea Association thing that was among the literature I initially got.) The AWAKE group meets quarterly....so that means sometime next month should be the next one, hopefully it won't collide with anything....and I'll go to it.

The Dreamer.

[summmersoff]

I never seen my sleep doctor ether, He read the report and decided what type of treament i needed. Went to my doctor and he wrote the script for my cpap. My doctor sent me for the sleep study but doesn't know much about the rest, but thats ok i have this board. sleep doctor whos that

[Sleepy Boy]

I have never even seen a sleep Dr. My Dr. set me up for a sleep test at the hospital, some Dr. wrote a RX for Wright & Flippis, they sent a guy to my house with all my equipment, he set the stuff up for me, I call Wright & Flippis for filters & a new mask every 3 Mo."s And I come to this site everyday 4-5 times to read & ask the questions that the Sleep Dr's and DME's, and all the rest of them wont answer or don't have time for. You'll get way more help right on this site, and someones here everyday to answer all your questions... Larry...

[summmersoff]

I also have no DME at this time because they wouldn't get me a auto with epr and i had the script . I went a bought what i needed, Need to get a new dme and get another machine for back up, Might try Apria???????

[elg5cats]

I don't think I'm having the typical experience currently.....First sleep study in 2003 saw MD once then Nurse for follow up. Sleep Study #2 PCP made referral for sleep study, had sleep study, MD produced a report and never had any contact with him...nor did my PCP who questioned the sensibility of the report written. Sleep Study #3 completed all the referral except required physcial, took completed referral forms to my MD asked for limited physical required, then faxed the referral to sleep center hired after interviews. Scheduled my own appointment for sleep study, scheduled my own appt for sleep titration, tried to schedule my own appt with sleep MD..required PCP referral, emailed PCP with MD name, phone number and date appointment needed by.......then rescheduled the appt to accomodate CPAP titration results...........saw sleep MD 3 months later for follow up. Requested to send sleep 2 weeks afterwards and call. Scheduled next follow up 3 months from last appointment! Is this real or am I just sleeping in REM with dreaming!!!!!

[hose head]

I'm another one who never saw my "sleep" doctor. She read the sleep study for $300 and sent the results to my doctor. My doctor has been very good about talking with me and working with me to get APAP. I have learned more here than from my doctor.