My Situation - FIRST NIGHT ON MY OWN

[Madalot]

As most of you know, my situation is not ideal in that I'm using the vent and it treats my issues, but I wake up 4-10 times per night and suffer from excessive daytime fatigue.

I have NOT given up the idea that jnk posed about trying a Resmed machine, but right now, I've been told I can't go that route. I have an appointment next week with my doctor and will ask her if she would be willing to write an order for a trial on a Resmed machine. If she writes it, they'll do it.

In the interim, an idea popped into my. Even though my doc agreed to try medication for leg movements, I am NOT convinced they are the culprit and even if they are, I think PAIN is a more likely cause.

ALMOST every time I wake up and check the machine, the pressure has increased from my minimum IPAP of 14 to between 17-18. Leaks do not seem to be a problem during these pressure increases. I am going on the theory that the increasing pressure is causing my awakenings.

What if I increased my min IPAP to 17? Even though it almost always drops back down to 14 when I wake up, it seems that I'm always going to need an IPAP of around 17 and that change from 14-17 wakes me up.

Thoughts?

[mars]

Hi Kathy

Experimenting is the name of the game, until we find something that works for us.

You have had more experience than most, and know how best to keep yourself safe, whilst trying to get a better result.

Good luck Kathy

cheers

Mars

[robysue]

Maddie,

If you have no trouble sleeping at IPAP = 17 and can get to sleep with the IPAP that high, then bumping the IPAP up to see if that minimizes or eliminates some of the excess number o wakes at night is a very reasonable idea. There are people who are quite sensitive to pressure changes and maybe you are one of them. So near as I can see, it can't hurt to try your idea at least for a night or two. If it works, you're one step closer to getting the quality of sleep you need and deserve. If it doesn't, you can switch back to the current settings and be no worse for the experiment.

Best of luck

[msradar65]

Is there a way to address the pain issues? If you think that pain really is the problem....maybe if you can address the pain issues you will sleep better.

Another suggestion...Vit D deficiency magnifies pain. Have you had your levels checked?

[Madalot]

Experimenting is the name of the game, until we find something that works for us.

You have had more experience than most, and know how best to keep yourself safe, whilst trying to get a better result.

Maybe so, but I figured I would ask for input in case there's something I am missing.

If you have no trouble sleeping at IPAP = 17 and can get to sleep with the IPAP that high, then bumping the IPAP up to see if that minimizes or eliminates some of the excess number o wakes at night is a very reasonable idea. There are people who are quite sensitive to pressure changes and maybe you are one of them. So near as I can see, it can't hurt to try your idea at least for a night or two. If it works, you're one step closer to getting the quality of sleep you need and deserve. If it doesn't, you can switch back to the current settings and be no worse for the experiment.

Thank you. This is what I was thinking as well that giving it a try couldn't hurt - or at least I hope not. I am a bit concerned about inducing centrals, but that may not be anything to be that concerned about on my equipment.

Is there a way to address the pain issues? If you think that pain really is the problem....maybe if you can address the pain issues you will sleep better.

Another suggestion...Vit D deficiency magnifies pain. Have you had your levels checked?

I take medication for the pain now. I changed the time I take the pain medication (I take it later so that it will last longer into the night) and that seems to have helped some.

My pain increases with increased activity. The other day, I went in/out of the house 3 times and climbed in and out of my SUV twice (something I haven't done in a long time). My leg pain was excruciating for two days after that.

I haven't had my vit d levels checked. I would need to run that by my pcp the next time I see him. I take calcium + Vit D now, but if my levels are low, it may not be enough.

[snuginarug]

That sounds logical to me... Can it hurt anything to try? If not, go for it. If it can't hurt and might help, it is a win-win situation.

Good luck on the experiment, if you go through with it.

((( hugs )))

[msradar65]

Madalot,
I was speaking with my doctor and he says everyone is Vit D deficient these days. I take 50,000 units of D twice a week..and I take 2000 units daily on top of that. i am still very low...but no longer critical low.

My doc has told me I will need Vit D for the rest of my life. It made a huge difference in pain, swelling and energy. I just wished I could get it the level up closer to normal.

[Madalot]

Even though I wasn't going to wait for a response from her, I did email my doctor asking permission to do this. Her response was "you can give it a try." I think she's to the point, too, where anything reasonable is okay with her.

So, I'm bumping Min IPAP to 17. If I get a nap in today, I'll do it then, if not, I'll test drive it tonight.

My EPAP is still at 6. Any thoughts about increasing that? I'm not sure on that one...

[HoseCrusher]

The cautious side of me thinks you may want to consider approaching this in steps. How about moving it from 14 to 15.5?

[Madalot]

The cautious side of me thinks you may want to consider approaching this in steps. How about moving it from 14 to 15.5?

I see what you're saying, but every time I wake up, the pressure is at least 17 (sometimes higher). My thinking is that setting it at 17 may stop all these sudden increases, thus stopping my awakenings (hopefully).

I was at min IPAP 16 for a while and was okay with it. I hope that 17 won't be that bad.

The bright side is that on the Trilogy, changing the settings is very easy and the new cart set up makes it so I can reach over and do it without getting out of bed. If 17 proves to be too much, adjusting it down won't be a big problem.

[jbn3boys]

I think increasing your IPAP is an excellent idea. As long as you can get to sleep with that pressure, and tolerate it for a little while, I'm guessing it will really help, especially if the change in pressure is what is waking you up.

As for the EPAP, in most cases I know, the EPAP is set quite close to the IPAP. I guess I don't understand why yours is set so far apart, so I'm not sure what to tell you about that one. My IPAP and EPAP are only 3 apart. (IPAP 16, EPAP 13). It seems like it would be a "softer" transition between inhale and exhale if the numbers are closer together. Conversely, it seems like it would be a drastic change if the numbers were really far apart. But like I said, I guess I don't know why yours were so far apart to begin with, so maybe I don't know what I'm talking about.

As for the Vitamin D, I really don't think it could hurt to take it, as long as you don't overdo it. Personally, I take 2,000 units twice a day. ( I do live in the north, and we have had a long, cold, dark winter...I may switch to once a day if we finally ever get summer!) The other benefit of Vitamin D is that is also helps increase mood. From some of your posts, it seems like that might be a good side effect of taking it!

[Madalot]

As for the EPAP, in most cases I know, the EPAP is set quite close to the IPAP. I guess I don't understand why yours is set so far apart, so I'm not sure what to tell you about that one. My IPAP and EPAP are only 3 apart. (IPAP 16, EPAP 13). It seems like it would be a "softer" transition between inhale and exhale if the numbers are closer together. Conversely, it seems like it would be a drastic change if the numbers were really far apart.

When I was on straight CPAP (with an IPAP of 13), they determined that I was unable to exhale against that high of a pressure -- I'm guessing from my diaphragm muscle weakness. They set the EPAP at 6 with bi-level and have left it there.

During my sleep study, they DID increase my IPAP and EPAP and I seemed to do okay on it. I'd have to look, but I THINK they had my EPAP at about 9 or 10.

[jbn3boys]

[quote="Madalot"

When I was on straight CPAP (with an IPAP of 13), they determined that I was unable to exhale against that high of a pressure -- I'm guessing from my diaphragm muscle weakness. They set the EPAP at 6 with bi-level and have left it there.

During my sleep study, they DID increase my IPAP and EPAP and I seemed to do okay on it. I'd have to look, but I THINK they had my EPAP at about 9 or 10.[/quote]

I guess I'm just afraid if you are going from IPAP of 16 or 17, and an EPAP of 6, that the change will feel like it's "pulsating" or "slamming" from one to the other. Just something to think about, I guess. If you raise the IPAP, and feel that pulsating, then maybe instead of lowering the IPAP, you could try raising the EPAP, to keep the two numbers closer together. But, if you can't exhale, then don't do that!

[Madalot]

I guess I'm just afraid if you are going from IPAP of 16 or 17, and an EPAP of 6, that the change will feel like it's "pulsating" or "slamming" from one to the other. Just something to think about, I guess. If you raise the IPAP, and feel that pulsating, then maybe instead of lowering the IPAP, you could try raising the EPAP, to keep the two numbers closer together. But, if you can't exhale, then don't do that!

I think...I will check my sleep study documentation and see how high they raised the EPAP and adjust it the same IF it seems necessary.

Thank you!

Tonight should prove interesting...

[Madalot]

I just looked at my documentation -- when supine, they made the following adjustments (IPAP was set from 14-23 so they left that):

EPAP 12
Rate 9
Volume 440

Interesting settings...may have to give these a whirl too.