Not Happy Newbie!

[LibbyLou]

Thanks for sharing your opinions!

I'm wondering how exactly I would go about trying to have UARS diagnosed (or even considered as a diagnosis, I guess). Like I said, the pulmonary doctor kind of just dismissed it, and the first ENT I saw pretty much dismissed everything and just told me to use the CPAP and take some OTC meds for the reflux he said I have.

Looking at my sleep study again, I'm confused about something I didn't really pay attention to before. Not sure if anyone can help interpret this or not. Under the Arousals section, it says I had a total of 250; 4 of which were Respiratory, 37 were Limb Movement and 209 were Spontaneous. The actual PLMS Arousal Index was 6.4, don't know if this is normal or what. But if all of my "events" were RERAs, why would more of my Arousals be under the Limb Movement and Spontaneous categories? What exactly constitutes a "Spontaneous" Arousal? Does that make sense?!

[Pugsy]

You might search the forum for "spontaneous arousal" and see if what has been previously discussed helps clear up your questions.
Here's a few examples
viewtopic.php?f=1&t=100447&st=0&sk=t&sd ... us+arousal

viewtopic.php?f=1&t=103883&p=986480&hil ... al#p986480

viewtopic.php?f=1&t=104276&p=983096&hil ... al#p983096

[LibbyLou]

Thank you, I will check those out!

[ChicagoGranny]

brick

[Greg Riddle]

Op. For a nasal spray try dymista. It is flownase mixed with an antihistamine. I tried many nasal sprays before and none worked but dymista does

[archangle]

If your leak is bad enough, some machines will not show usage during that leak time. It's at least partially to keep people from "cheating" on compliance by just turning the machine on and not using it.

I don't know if the PRS1 SE model is smart enough to do that.

One thing you CAN do with your SE machine is raise or lower the pressure and see how you feel. You would be a LOT better off with a decent CPAP machine with full data.

Since most insurance companies require that the machine be a rental the first few months, you do have SOME leverage with the DME. A number of people have gotten their DME to swap out a brick for a good CPAP.

[LibbyLou]

Op. For a nasal spray try dymista. It is flownase mixed with an antihistamine. I tried many nasal sprays before and none worked but dymista does

If the Flonase doesn't start doing something soon, I may look into that. Thanks!

If your leak is bad enough, some machines will not show usage during that leak time. It's at least partially to keep people from "cheating" on compliance by just turning the machine on and not using it.

I don't know if the PRS1 SE model is smart enough to do that.

One thing you CAN do with your SE machine is raise or lower the pressure and see how you feel. You would be a LOT better off with a decent CPAP machine with full data.

Since most insurance companies require that the machine be a rental the first few months, you do have SOME leverage with the DME. A number of people have gotten their DME to swap out a brick for a good CPAP.

Ah, yeah. I wonder if that's what the RT meant when he said he saw "something" happening. Would my mouth being open show up the same way as an actual leak, as non-usage?

I am renting it for 90 days, per my insurance. I just might call and see if they will switch me out for a NON brick. But I guess I still won't be able to actually view the data myself until the rental period is up though, since it has the modem on it.

I feel like the pressure is fine, but then again, maybe I just don't know. I'm falling asleep so much easier at the beginning of the night, but I don't know what's going on during the night. Last night I know I woke up a couple times early on, but just briefly. Then like the second half of the night, I felt like I was barely sleeping for some reason. I kept feeling like the mask had all of a sudden stopped fitting properly or something, it was weird. And this morning my neck and upper back are killing (which they have been for months now, but there are days when it's not so bad - today is not one of those days). Just so TIRED of all of this and so TIRED to the bone.

[WildMtnHoney]

FWIW, I have a lovely "non-brick" and it has a cell modem AND an SD card, so I get my data and they get theirs.

[LibbyLou]

FWIW, I have a lovely "non-brick" and it has a cell modem AND an SD card, so I get my data and they get theirs.

Oh, okay - so maybe mine only has room for one or the other since it's......what it is.

[Pugsy]

I haven't seen the back of the SE machines to know where the SD card slot might be but typically the modem covers the SD slot so the modem has to be popped off (easy to put on and off) to pull the SD card.
So having a modem doesn't mean a person can't get the SD card out.

Put that tech's feet to the fire....point blank ask him if he saw a big leak.
If he says yes...ask him to provide you with a copy of what he saw.
Then when he stumbles and back peddles ask about swapping out for a machine that will really give leak data.

[LibbyLou]

I haven't seen the back of the SE machines to know where the SD card slot might be but typically the modem covers the SD slot so the modem has to be popped off (easy to put on and off) to pull the SD card.
So having a modem doesn't mean a person can't get the SD card out.

Put that tech's feet to the fire....point blank ask him if he saw a big leak.
If he says yes...ask him to provide you with a copy of what he saw.
Then when he stumbles and back peddles ask about swapping out for a machine that will really give leak data.

Hmm, okay. I'll have to check out the back. Because he did pop out the SD card before he put the modem on, just basically saying it wouldn't be needed because the modem would be on there. I didn't think both could be on at the same time, but maybe they can be. If I remove the modem though, I'm afraid I might get in trouble.

I think I will definitely be giving him a call.

[Pugsy]

Again...I haven't seen the back of the SE machines but most of the other machines the SD card can be left in the machine though DMEs often will remove it. In your case I don't even know what software could be used to see the compliance data that the machines stores...
I am assuming Encore but it doesn't mention it anywhere on the product specs that I could see.
If the SD card is gone you can insert any blank SD card (doesn't have to be Respironics) and the machine will write the hours of use data to the SD card. That part is easy.
If you want to try using Encore software...send me a PM. Windows only though...Respironics doesn't do Mac software.
Using a SD card or software does absolutely nothing to the modem data transfer though....so don't worry about that part of it.

I would still call them up and ask about swapping....if you don't ask the answer is always "no".

[archangle]

There's little point in using the SD card on the SE machine, other than to see when you turn the machine on and off.

However, I'm pretty sure the SE machine is the same as the better machines. You can use the modem and the SD card at the same time. Pretty much any regular SD/SDHC card will work. You have to pop the modem off to get to the card.

On the fully data capable machines, a bad enough mouth leak would probably show up as non-usage just like having the mask off. I haven't experimented with it enough to be sure. The SE machine doesn't measure air flow, so I'm not sure whether it can sense leaks at all. It doesn't report leaks, but it could possibly tell you have a big leak by noticing that it's running the fan as fast as possible, but the pressure is still low.

If you go after a better machine, you want at least a PRS1 PRO/460 model. Respironics makes a DS250 brick, and a PRS1 Plus/DS260 brick as well.

There is info on machine models in the Useful Links in my signature line below.

By the way, a "brick" CPAP machine is still a wonderful, life saving device. However, a fully data capable machine is an much more wonderful device that will save many more lives at little, if any extra cost.

[library lady]

LibbyLou, everyone has given you great advice. I have several things to add:

#1: you don't indicate where you live, but I'd like to suggest going for a second opinion that includes another sleep test if it's at all feasible for you. Perhaps a large teaching hospital or major clinic with subspecialties... If you didn't have an apneas during your study, you may not have apnea at all, and one poster did suggest testing for UARS. I used to live in a small town where they had general practitioners but no local specialists, and they contracted with a large clinic 150 miles away to have specialists serve the area on a monthly basis. Mostly we had to go the distance for specialty care. I grew up in, and have now returned to Rochester MN and the Mayo Clinic, and specialists abound, in addition to quicker diagnoses.

#2: it does take quite a while to reach a point where you're not tired all the time, sometimes several months. In my case, I have had fibromyalgia for a number of years, and still have never felt completely rested in the 15 months since I started CPAP. However, I do know that I am sleeping better and It no longer takes an hour to an hour and a half to get to sleep. In addition, the nighttime bathroom trips are very infrequent, probably because I don't wake up as often during the night due to better sleep.

#3: At the time of my sleep study, the sleep doc determined that I have delayed sleep phase syndrome in which my best sleeping time is from 3AM to 11AM... I've had trouble falling asleep since I was a child. Now that I know about it, I've been able to take steps to minimize this, which included training my brain to sleep on a different schedule, and I now go to bed around 11:45PM, usually getting up at 7:30 or 8:00. Because of this, I'm still groggy for an hour or so after I get up, but I'm able to function better, and I have more energy during the day than before CPAP. Most nights my AHI is <3, and I'm getting healthier, losing the weight, and in general feeling better in spite of never feeling completely rested.

What I'm trying to say is, I think you really need to get a second opinion to determine if you do have OSA, or if UARS and/or other factors are coming into play. Right now every doctor you have seen tells you something different, and that isn't helping you get to the bottom of things. Good Luck, and come back as often as you need to for help along the way.

[LibbyLou]

Thanks for replying - sorry I haven't been back before now. I am now battling some kind of sinus funk that has made me totally unable to even use the machine for the past two nights. This is while I'm also using Flonase. I am so over all of this.

I would still call them up and ask about swapping....if you don't ask the answer is always "no".

I just spoke to the RT and asked about swapping, and he said that right after I picked my machine up they upgraded to a new Respironics. Naturally. He didn't say which one it was, but he said I could come in on Friday and swap mine out. So, possible progress there!

LibbyLou, everyone has given you great advice. I have several things to add:

#1: you don't indicate where you live, but I'd like to suggest going for a second opinion that includes another sleep test if it's at all feasible for you. Perhaps a large teaching hospital or major clinic with subspecialties... If you didn't have an apneas during your study, you may not have apnea at all, and one poster did suggest testing for UARS. I used to live in a small town where they had general practitioners but no local specialists, and they contracted with a large clinic 150 miles away to have specialists serve the area on a monthly basis. Mostly we had to go the distance for specialty care. I grew up in, and have now returned to Rochester MN and the Mayo Clinic, and specialists abound, in addition to quicker diagnoses.

#2: it does take quite a while to reach a point where you're not tired all the time, sometimes several months. In my case, I have had fibromyalgia for a number of years, and still have never felt completely rested in the 15 months since I started CPAP. However, I do know that I am sleeping better and It no longer takes an hour to an hour and a half to get to sleep. In addition, the nighttime bathroom trips are very infrequent, probably because I don't wake up as often during the night due to better sleep.

#3: At the time of my sleep study, the sleep doc determined that I have delayed sleep phase syndrome in which my best sleeping time is from 3AM to 11AM... I've had trouble falling asleep since I was a child. Now that I know about it, I've been able to take steps to minimize this, which included training my brain to sleep on a different schedule, and I now go to bed around 11:45PM, usually getting up at 7:30 or 8:00. Because of this, I'm still groggy for an hour or so after I get up, but I'm able to function better, and I have more energy during the day than before CPAP. Most nights my AHI is <3, and I'm getting healthier, losing the weight, and in general feeling better in spite of never feeling completely rested.

What I'm trying to say is, I think you really need to get a second opinion to determine if you do have OSA, or if UARS and/or other factors are coming into play. Right now every doctor you have seen tells you something different, and that isn't helping you get to the bottom of things. Good Luck, and come back as often as you need to for help along the way.

I really wouldn't mind having another sleep study done, but honestly, it's not in the cards at the moment, financially. I'm not sure when it will be. Medical bills are for the birds and I have lots that are starting to come in now, from all the stupid testing I've been doing.

One of the things my doctor did mention is fibromyalgia, but who knows?? UARS is something else I would really like to look into further, as well as LPR, but again, $$$. Sigh.

And yeah, all these doctors telling me all these different things, possibilities, etc. is getting overwhelming and beyond frustrating. I just want ONE concrete, definite answer to why I feel like crap all the time. And then I want to know exactly how to fix it, and I want that thing to work. Is that too much to ask?