edit: Doctor says no apnea now pg. 3

[FairwayGirl]

I met back with my new sleep doctor, and she thinks I will have to switch to a BiPAP machine. I'm just so frustrated I don't want to loose the money ($200!!) for the rental I have now, just to have to spend even more money on a new machine :/ has anyone done this before!?! I'm so confused and frustrated! I will also have to do a 3rd sleep study (BiPAP titration) and I just did 2 a month and a half ago my insurance doesn't have a deductible to meet, it's a straight percentage, and co payment . I just want to know if anyone knows if this will actually help me, is it worth it? CPAP is like torture right now and I feel worse every day. I wish I had thought to take daily pictures since starting...I look so tired and horrible because I'm feeling worse every day my epilepsy has gotten out of control the sleep doctor wants to tell me to quit using its but also doesn't want to tell me that...she seems as lost as I feel!

[HoseCrusher]

When in crisis the first step is to back up a little and gain a bigger perspective.

You may think you are falling down the "rabbit hole" while you have only stepped in a mud puddle. The mud puddle is messy and you have to clean up afterward, but it is not hopeless like the "rabbit hole."

[FairwayGirl]

I don't anything about a rabbit hole. Just know that I'm going to be an additional $1000, and I don't have that kind of money I don't see how a different machine will help, when my issues are the thing touching my face. I wake up all night freaking out because it's touching me...the air freaks me out. Pretty much every aspect of the machine is killing me slowly. I just don't know what else to do. I just need to be able to live a normal life, not having epileptic events constantly is the only thing I need now...which is not the issue I had before I'm just trying to explore all my options, and I don't see how another machine will help me out I just feel like all these doctors just want more money

[Thatgirl]

I never did great with CPAP. BiPAP has been life changing.

[FairwayGirl]

Thank you for saying it worked for you. I've been doing so bad with the CPAP! Every time the pressure changes it wakes me. I'm getting much less sleep now than ever before so, it's increasing my epilepsy horribly I also hate all the masks touching my face, so I kinda hate to invest so much more money when I may not be able to do this one either

[Greg Riddle]

Don't feel too bad I started on cpap and didn't work but the dr didn't figure out until a year later that I needed a bipap. Paid about a grand for a cpap then had to buy a bipap.

Sent from my SM-N910V using Tapatalk

[ChicagoGranny]

I met back with my new sleep doctor, and she thinks I will have to switch to a BiPAP machine.

What was the date of this visit?

On April 18, you wrote,

My range is ramp 4 and 6-8 is my max range...with below 2 ahi. (Never any apnea it's only the "h" word, but I forget the word!)

Did the new doctor say why she thinks you will need BiPAP?

Have you posted any SleepyHead charts here?

[FairwayGirl]

I met with the new doctor yesterday. She thinks the BiPAP will work better. She just said maybe I will be able to sleep so my epileptic events will be less. I think from what I understood it will help my pressure changing issue? I honesty can't figure out why she thinks it will work better :/ I still can't figure out how to load sleepyhead pictures. I very rarely have access to the computer. I check it when I have a chance, but, I don't have the ability to do it often :/

[lilly747]

I've been doing so bad with the CPAP! Every time the pressure changes it wakes me. I'm getting much less sleep now than ever before so, it's increasing my epilepsy horribly I also hate all the masks touching my face, so I kinda hate to invest so much more money when I may not be able to do this one either

I still can't figure out how to load sleepyhead pictures. I very rarely have access to the computer. I check it when I have a chance, but, I don't have the ability to do it often :/

It makes it very hard to suggest anything with your limited access to a computer and inability to post Sleephead graphs. Am I wrong in assuming that you are not able to download Sleephead and look at your data due to limited computer access?

With that said, do you know how to change different settings on your CPAP Machine, and do you have the Clinician's manual? If not, would you be able to even download it onto something, i.e. external hard drive?

You said it was the changing pressure that bothered you. Can you try a fixed pressure or ask your doctor if you could try a fixed pressure?

Sorry you're having so many problems....keep coming back.....don't give up

[FairwayGirl]

I'm able to upload data to sleepyhead and I check it usually around once a week, sometime every other week. I average 2-2.5 (sometimes less!) but, I have no idea how to upload the pictures on here :/ My issue with a fixed pressure is that I can't stand the 8 or 9 that works best. I have it from 5.5-8 right now, but wake up constantly. Part of the issues are the pressure changes, another problem is the mask touching my face:( there isn't anything I can do about that either this whole thing has been very frustrating :/ I think I will just not use the machine again until after my BiPAP titration test :/ I also started a new sleeping med, Silensor? Except it's the generic version which is 10mg instead of 2-3...I was extremely groggy today, so I hope that gets better! I just didn't know if anyone had much experience in being swapped to BiPAP from CPAP a month-2 months into treatment...or is that weird!?!

[Julie]

Go to Imgur.com and download your pix there (follow their instructions re how) and size them as well as possible... leave out the calendar on the upper left (that will make sense when you do it). When you have 1-2 days' worth done, leave a link to them in this thread and we'll take a look... if you need more help, be specific about what that is.

As far as Cpap vs Apap, your machine should have be able to switch from auto to Cpap mode... take a look at the manual and at the machine itself (the features). You need to make that switch deliberately, it can't happen otherwise as e.g. just another function in the auto menu.

[FairwayGirl]

I know how to change the mode, I just can't stand the pressure where it needs to be :/ and my main issue for trying to figure out the igor site is time. I don't ever have a chance to use the computer, and I rarely have enough energy to move once I get home from work. I feel so much worse since starting CPAP there are days my arms won't even work I knocked a bunch of things off the counter trying to show my daughter what I needed her to hand me it's really bad when a person with brain cancer asks me what's wrong with me because I look beyond exahusted I'm that bad. I do wish I had taken pictures every day to see how much worse I am now than when I started

[robysue]

I met back with my new sleep doctor, and she thinks I will have to switch to a BiPAP machine.

Been there, done that, and have the BiPAP to prove it.

A variation of this post was written by me almost 5 1/2 years ago. (See BiPAP? Met with the sleep doc's PA and didn't expect this)

Like you, at the time CPAP felt like torture. And I felt worse every day. And I felt 100 times worse on CPAP than I'd felt just before CPAP. I was in and out of the sleep doc's office meeting with a PA frequently on "semi-emergency" meetings and there were lots of phone calls between the PA and me or my hubby because I was doing so horribly on CPAP. And yet I was shocked when the PA suggested that at I should do a third titration study and switch to BiPAP just 8 weeks after I started CPAP.

But in the end, I'm glad I did. It still took time for me to fully adjust and start sleeping well with the BiPAP, but at least the BiPAP didn't trigger the instant aerophagia issues. And it took just enough of an edge off the physical overstimulation that was making me severely uncomfortable for me to be willing to start working with the PA on fighting the insomnia with a well designed cognitive behavior plan.

I'm just so frustrated I don't want to loose the money ($200!!) for the rental I have now, just to have to spend even more money on a new machine :/ has anyone done this before!?!

In my case the DME took back the CPAP and applied the rental money that I'd already paid to the new BiPAP. They also did not charge me for a new humidifier unit even though I went from a Resmed S9 AutoSet to a PR System One BiPAP Auto and the old humidifier (which was fully paid for) did not fit the new machine. Yes, my monthly payments for the remaining rental period went up quite a bit because the cost of the machine was about twice as much. But as I said, I didn't loose any of the money that I'd already paid out.

You should contact the DME and let them know that the sleep doc wants to switch you to BiPAP and ask them what their policy is if that happens during the rental period.

I'm so confused and frustrated! I will also have to do a 3rd sleep study (BiPAP titration) and I just did 2 a month and a half ago my insurance doesn't have a deductible to meet, it's a straight percentage, and co payment .

Bummer on that insurance. I was lucky, all I had to pay were $20 copays for my sleep studies back then.

I just want to know if anyone knows if this will actually help me, is it worth it? CPAP is like torture right now and I feel worse every day. I wish I had thought to take daily pictures since starting...I look so tired and horrible because I'm feeling worse every day my epilepsy has gotten out of control the sleep doctor wants to tell me to quit using its but also doesn't want to tell me that...she seems as lost as I feel!

The question of whether switching to BiPAP from CPAP is going to help or not depends strongly on what your specific problems with CPAP are.

I know it's hard, but you need to be able to articulate what makes the CPAP torture. Do you have actual physical discomfort? If so, can you articulate what is uncomfortable when you are using the CPAP? Or is the problem mainly that you can't get to sleep or stay asleep long enough to get some rest?

And the epilepsy is an important twist that I did not have to deal with. Does the doc who treats your epilepsy know what's going on? Do you have any ideas on why the epilespy is out of control? Is it just that you are unable to get the sleep you need? Or is it something else entirely?

[robysue]

I know how to change the mode, I just can't stand the pressure where it needs to be :/

It could be that with BiPAP you might find the pressure easier to bear. For some people the EPAP can be lower than the titrated CPAP pressure and that can help.

And even if there's not much of a pressure change, some people the way a BiPAP transitions between IPAP and EPAP makes it easier to breathe in a normal fashion, even if they were using exhalation relief on their CPAP/APAP.

When I was on CPAP and APAP, I had pressure settings that are considered quite low around here. My APAP range was 4-8 (with EPR = 3) and yet I still had a hard time tolerating the pressure: It was not natural to exhale---it felt as though the machine was trying to encourage me to inhale before I was done exhaling. And I was dealing with serious bloating in my stomach on most days. (On the worst days/nights I'd wake up in pain with a rock hard stomach.)

I started out with fixed BiPAP settings of IPAP = 8, EPAP = 6, and that was essentially mimicking my APAP when it was at the high end of its pressure range. And yet the BiPAP felt better. As in I didn't feel like the machine was rushing me to start inhaling when I was not done exhaling. And the bloating was less, although it was still there. Eventually the PA decided to let me try BiPAP Auto (my DME set me up with a BiPAP Auto to start with), and we settled on the range that I still use: Min EPAP = 4, max IPAP = 8. With these settings I don't have any problems with sensory overload issues except if I'm very uptight and stressed out anyway. I don't have the serious aerophagia problems that I dealt with on an ongoing bases.

it's really bad when a person with brain cancer asks me what's wrong with me because I look beyond exahusted I'm that bad. I do wish I had taken pictures every day to see how much worse I am now than when I started

Yes, I understand. For the first 3 months I was on CPAP/APAP, I looked like the walking dead. People in my department kept telling me I looked awful and asking me what was wrong and whether there was anything they could do to help. It did get better after starting BiPAP and the CBT for insomnia.

[FairwayGirl]

Oh my gosh!! You are the answer I'm looking for!! You sound exactly like what I am going through!! The air blowing on me is one of the biggest issues I have. So is the noise. I have misophonia, many noises REALLY bother me. Some make me throw up (like the sound of a penny spinning, or someone eating!!) the other big issue I have is the mask touching my face. It makes me wake up over and over...I usually yell and try to pull it off, so I keep my husband awake too but, the biggest problem I have is no restful sleep. I wake up constantly, and the no sleep is what makes my epilepsy so much worse (a LOT of epilepsy is triggered by being tired! My 8yo son is triggered by it as well, he inherited epilepsy from me ) I called my neurologist as soon as I was told I needed the CPAP, and have kept her very much in the loop during this whole process. I have taken a couple sleep meds, so far they don't help. I can fall asleep (with the melatonin) but I wake constantly (that and the extreme sleepiness is why I went to the sleep doctor to begin with!) but, it's actually worse since starting CPAP. I have kept with it, because I really cannot continue living this way. My neuro wants me to stop working and get disability!! I'm 35, that's crazy!! I only started working 1.5 years ago (I was off with my kids before that, and worked before I had the kids!) but, I've gone down hill so quickly since working she is very worried about me not working is not an option, though!