First Follow-up w/doc @ 2 months

[Suzjohnson]

Had such a great appt. with sleep doc yesterday! He liked the Sleepyhead program and was pleased I was tracking the progress of therapy. He even kept a couple of my charts. He was not pleased to see all the obstructive and central events when I have a bad night and agreed that I was having episodes of periodic breathing. Bummer! So, the immediate plan is to increase the upper pressure to 12 from 10.60 and leave the lower pressure at 6.60 and try to use EPR at 1 rather than 2, then see what happens. If things go to heck in a handbasket, change back to previous settings. He said I probably will need to do another sleep study using a bi-level or ASV machine when I return from Nebraska near the end of July but is hoping to get my obstructive events down to a reasonable level without increasing the centrals too much before I leave town on 7/10. He also suggested that the UARS that showed up in my original study might be rearing it's ugly head and be part of the reason for my continued great sleepiness. So until I get back in town, he suggested I give Nuvigil a try and gave me some samples. I'm sorry to have to leave and delay the sleep study but I need to help my disabled son after neck surgery. I hope the Nuvigil works without giving me other issues because it will be hard to be helpful if I need to take a nap every couple of hours. So, that's it for now. Over & out.

Suz

[ChicagoGranny]

I hope Nuvigil helps. Do be aware that there is no "Off" button. Nuvigil may still be in your system at night and interfere with sleep. Just something to be on the lookout for.

Good luck.

[-tim]

EPR is good for getting used to the machines. It decreases effectiveness over the long run for most people. It also means your 10.6 is a 10.6+3 or 10.6-3 if it was set at 3.

Check your data.. if its often approaching 12, then maybe that isn't high enough.

Can you explain why 6.6 as a low? Why not 6.4 or 6.8?

[Suzjohnson]

EPR is good for getting used to the machines. It decreases effectiveness over the long run for most people. It also means your 10.6 is a 10.6+3 or 10.6-3 if it was set at 3.

Check your data.. if its often approaching 12, then maybe that isn't high enough.

Can you explain why 6.6 as a low? Why not 6.4 or 6.8?

Hi tim! I spent some time with EPR set on 3, then after a few weeks moved it to 2. My goal has been to get to 1 all along. I know it's do-able because I can still remember when I thought I couldn't live with 2 and now it's nothing. I check my data every morning. When my pressure was set at 10, it maxed out frequently so my move to 10.6 was because I wanted to make small, incremental changes and look to see if I was still maxing out. My next choice would be to set it at 11 but the doc accelerated my plan. 6.6 is as close as I could get to half way between 6 and 7. Right now, tim, it's a balancing act and I will be paying close attention. Thanks for your input!

ChicagoGranny, Hi! Yes, after reading most of the posts in this forum regarding Provigil and Nuvigil, I decided to err on the side of caution as I know I don't process meds quickly, so I cut a tablet in half this morning. So far, I'm only experiencing a bit of a headache, dry mouth relieved with chewing gum and a vague sense of being under the influence of... something. Think I'll skip driving today so the only concern left is if I will be able to go to sleep tonight. I'll download a good book just in case. Thanks for the good wishes!

Suz

[jwerley]

Hi Suz........Good to hear that you had your follow-up....Your doc sounds like he knows what he is doing and it is good that he approves your being involved in your therapy...I am not sure about mine, as he is new to me. Have a good trip...I know that it will probably be difficult...but rewarding at the same time! I hope yours son's surgery goes well....Take your computer and keep us informed.....(if you can)

Take care......
Janice

[Suzjohnson]

Hi Suz........Good to hear that you had your follow-up....Your doc sounds like he knows what he is doing and it is good that he approves your being involved in your therapy...I am not sure about mine, as he is new to me. Have a good trip...I know that it will probably be difficult...but rewarding at the same time! I hope yours son's surgery goes well....Take your computer and keep us informed.....(if you can)

Take care......
Janice

Hi Janice,
Thank you so much for your good wishes for my son. The risks are high but not doing surgery is no longer an option. Yes, I'll be taking my little laptop to keep up with SleepyHead data and can use wifi at my daughter's home for the internet so I won't be far away.

It's hard to get a feel for a new doc. I have such a built-in bias against them anyhow. A few more visits for you to build confidence in him, or tell him so long. I'm so glad your confidence in yourself is growing as you make decisions about your own therapy because it will give you the courage to challenge his/her opinions, which can lead to some very interesting discussions, as I discovered yesterday.

How are things going for you? Haven't heard from you lately and have been thinking about you.

Hugs,
Suzanne

[BostonGal]

I have a funny (well maybe not that funny) story about 6.6. I knew what the answer would be before she wrote it. I started with a minimum of 6 and decided it was too low...still felt like I was suffocating. So I asked my PCP to write a prescription to change it to 6.5 (half way). well, I wanted to do the change by the book and have the dme change it (they could remote into the machine). well after multiple calls to both places to finally get the prescription in the right place...still no change. So I call the DME. We cant do fractions it has to be whole numbers. well, ok, you could have told me that 2 weeks ago, but I'll start the whole process again. So in the meantime, the DME changes it to 6.6. OK, that was nice but then I decide, yeah, I rather go to 7, 6.6 is still not enough. So I started the circus over again...waited for the dme to take action and after another 2 weeks said **** it and changed it myself. So I might end up in CPAP jail...but at least I can breathe...and there is a prescription on record for the pressure it's on now.

So thank you all...I would have never figured that I could do that without this forum!

[Suzjohnson]

BostonGal, it really is a funny story! I can just picture your frustration. I guess anything that behooves us to defy certain unreasonable conventions and act for our own welfare is a good thing. Ya did good!!

Suz

[jweeks]

He also suggested that the UARS that showed up in my original study might be rearing it's ugly head and be part of the reason for my continued great sleepiness.

Suz,

UARS has been my most recent challenge. In reading about it, it seems like it still isn't well understood by the medical community. I experimented with various settings on the two machines that I have, and I came to the conclusion that auto-adjusting machines are not able to detect and react to UARS events. I ultimately ended up trying a number of fixed pressure settings until I came up with a level where I wake up feeling good. The reason that auto doesn't work is that if you are not having an obstructive, hypo, or central event, the auto algorithm will lower the pressure below what you need to treat the RERA breathing that makes up UARS. My experimenting wasn't overly scientific, but my doctor agreed that I probably got dialed in as well as what a hospital sleep study could have done (many non-hospital sleep clinics cannot diagnose UARS).

It is a good sign that your doctor is aware of what UARS is...that is often half the battle. Good luck, and please post updates on how things are going.

-john-

[Suzjohnson]

[quote="jweeks"
UARS has been my most recent challenge. In reading about it, it seems like it still isn't well understood by the medical community. I experimented with various settings on the two machines that I have, and I came to the conclusion that auto-adjusting machines are not able to detect and react to UARS events. I ultimately ended up trying a number of fixed pressure settings until I came up with a level where I wake up feeling good. The reason that auto doesn't work is that if you are not having an obstructive, hypo, or central event, the auto algorithm will lower the pressure below what you need to treat the RERA breathing that makes up UARS. My experimenting wasn't overly scientific, but my doctor agreed that I probably got dialed in as well as what a hospital sleep study could have done (many non-hospital sleep clinics cannot diagnose UARS).
It is a good sign that your doctor is aware of what UARS is...that is often half the battle. Good luck, and please post updates on how things are going.
-john-[/quote]

Hi John!
Interesting you should write about this as I've given it a lot of thought since Wednesday. I'm happy to hear you have dialed in some settings that are doing you good. I'm not even certain it's one of my current issues but looking at everything to date, it's difficult not to come to the conclusion that UARS isn't at least a possibility. It had a significant presence in the original sleep study but was almost non-existent in the titration study so, obviously, the wise ones concluded that with CPAP it wasn't going to be an issue. But then, I've been basically titrating myself for the past two months and several things have popped up that weren't of note in the hospital version. The more I think about it, the more I am convinced that the lab sleep study is only good for indicating trends and a few things to look out for as well as guesstimating an initial pressure setting. Things can look very different after you sleep in your own bed awhile and grow accustomed to the whole process. Ah, I digress. As I suspected would occur, the machine was chasing events but even when it got to 12, a number of obstructives snuck in and I didn't see much issue with centrals. So, I was thinking about trying a set pressure of 12 and see what happens. There was only one central during a high pressure period but desats remained a problem so thinking all that extra air might do some good. Does this sound like a totally loony idea?

Suz