My Situation - FIRST NIGHT ON MY OWN

[Guest]

Your doctors don't seem to have much interest in working on the problem. YOU are unwilling to experiment with changing the settings on your machine. You may be out of luck until one of those attitudes vanishes. Which attitude is easier to change, yours or the doctors'?

I think we're finally there:

And since none of my medical team seems to want that job, I guess I'm drafted.

Well done. I'm glad you are taking charge of your health, and I think you have a much better chance of solving the problem now.

[rested gal]

Since you're experimenting ...

On a regular BiPAP machine, your breathing was not consistently triggering the switch between IPAP/EPAP.

With the machine you're using now, perhaps it would. If your current machine can operate in plain bilevel spontaneous mode, I'd probably give that a try during one of your recliner naps -- with these settings: IPAP 11, EPAP 6.

[Madalot]

Since you're experimenting ...

On a regular BiPAP machine, your breathing was not consistently triggering the switch between IPAP/EPAP.

With the machine you're using now, perhaps it would. If your current machine can operate in plain bilevel spontaneous mode, I'd probably give that a try during one of your recliner naps -- with these settings: IPAP 11, EPAP 6.

Turning AVAPS off would put it in basic bipap s/t mode. No problem there.

I can also re-adjust the sensitivity settings now that I know how to.

Question: Is IPAP of 11 high enough? When on my side, I seem to need a basic IPAP of around 14-15, jumping to 17+ when I get to sleep.

[LoQ]

Question: Is IPAP of 11 high enough? When on my side, I seem to need a basic IPAP of around 14-15, jumping to 17+ when I get to sleep.

Well, I would have the question of whether 17+ is absolutely necessary to save your life, or just to achieve perfect breathing. If I were you, I would be more in a quest for quality of life, which means restful sleep. Definitely you need to use your oximeter to see what happens, but I'm betting that nothing terrible is going to happen if you lower the IPAP, though you may not clear all events as effectively as you would with higher pressures.

You might even consider turning up the oxygen a bit to compensate. Supplemental oxygen cannot completely compensate, because if you actually stop breathing, you can't get more oxygen in, but the air that is already in your lungs will have more oxygen than it would if you didn't receive supplemental oxygen. Therefore, it might be helpful to raise the level a bit.

My AHI is between 2 and 3 most days. I could get it lower than that, but my quality of life would indeed suck more at a lower AHI because of the consequences of the kinds of changes I would have to make to get there.

For what it's worth, my oxygen levels went well below 90% for long periods of time each night, probably for decades, and I'm still here and doing relatively well. It's clearly a very bad thing, but it's also true that dipping below 90% doesn't always kill you.

[snuginarug]

There are "too many cooks in my kitchen" and somebody needs to be "head chef." And since none of my medical team seems to want that job, I guess I'm drafted. I need to get into "bitch mode" to do the job -- and I'm working on it.

While I commend you for taking on the job no one else seems to want to do, it really does make me mad. Doctors return calls to other doctors more quickly than calls from patients. Doctors listen more closely to other doctors than patients. Doctors are more willing to think outside the box when it is another doctor coming up with the suggestion. Not having a single doctor coordinating your care makes this so so so much harder, as you do not get the same deference and attention that would be given another doctor. Therefore you have to go into "bitch mode." All this makes me mad on your behalf. I really admire that you are willing to do what no one else will step up to the plate and do. Keep pursuing your goal of quality of life. You're worth it.

Well, I would have the question of whether 17+ is absolutely necessary to save your life, or just to achieve perfect breathing. If I were you, I would be more in a quest for quality of life, which means restful sleep.

This is an interesting thought. You want to not feel like shit, not score an "A" on your breathing report card.

[rested gal]

Well, I would have the question of whether 17+ is absolutely necessary to save your life, or just to achieve perfect breathing. If I were you, I would be more in a quest for quality of life, which means restful sleep.

This is an interesting thought. You want to not feel like shit, not score an "A" on your breathing report card.

Exactly. Good point made by both LoQ and snug.
Love the way snug put it!! That's so right!

Since you're experimenting ...

On a regular BiPAP machine, your breathing was not consistently triggering the switch between IPAP/EPAP.

With the machine you're using now, perhaps it would. If your current machine can operate in plain bilevel spontaneous mode, I'd probably give that a try during one of your recliner naps -- with these settings: IPAP 11, EPAP 6.

Turning AVAPS off would put it in basic bipap s/t mode. No problem there.

I can also re-adjust the sensitivity settings now that I know how to.

Question: Is IPAP of 11 high enough? When on my side, I seem to need a basic IPAP of around 14-15, jumping to 17+ when I get to sleep.

I'd still first try " bilevel IPAP 11, EPAP 6 " for a nap in the recliner. That might give you an idea if lowering the IPAP (as drastically as I would) helps at all. You can always keep tweaking as the naps (and nights in bed) go on. That's just where I'd start...at a rather extreme lower point than the free-rein very high IPAP swings they've had you using for so long.

If big pressure swings up to a high IPAP have been the main culprit (probably not the only culprit...there's always "pain" to consider) in disturbing your sleep, drastically reducing the IPAP might provide a clue. Or...might not. There could be so many changing factors going on, that trying to zero in on one aspect of your therapy at a time may not produce an "AHA, so THAT's what's doing it." But for pressure experiments, that's where I'd start -- at this point if it were me.

[rested gal]

I'm still working on all of this, from numerous angles. I need to make a decision about Mirapex (whether to keep taking it, increase the dosage or give up on it)

I'm still struck by how the Limb Movements they noted in both your studies almost always happened only in REM. Not in any other stages of your sleep where, as far as I know...and I'm not a doctor... true "PLMD" (periodic limb movement disorder) would be expected to be seen.

Those limb movements you had almost exclusively during REM are probably not indicative of true PLMD at all, imho. Plain old "Limb Movements" accompanying the respiratory arousals you were having during REM would be my guess about those movements. Not "PLMD" (a separate sleep disorder of its own) at all.

I'd not be trying to treat what likely is not there in the first place. In other words I'd not use Mirapex, or any med, in an attempt to treat "PLMD" that I don't believe is really even there in your case. I wouldn't want any extra meds that are not absolutely necessary added to the mix. But I'm no doctor.

[Madalot]

Question: Is IPAP of 11 high enough? When on my side, I seem to need a basic IPAP of around 14-15, jumping to 17+ when I get to sleep.

Well, I would have the question of whether 17+ is absolutely necessary to save your life, or just to achieve perfect breathing. If I were you, I would be more in a quest for quality of life, which means restful sleep. Definitely you need to use your oximeter to see what happens, but I'm betting that nothing terrible is going to happen if you lower the IPAP, though you may not clear all events as effectively as you would with higher pressures.

Excellent point, LoQ. Not a viewpoint I had considered, but certainly am now. Thank you.

There are "too many cooks in my kitchen" and somebody needs to be "head chef." And since none of my medical team seems to want that job, I guess I'm drafted. I need to get into "bitch mode" to do the job -- and I'm working on it.

While I commend you for taking on the job no one else seems to want to do, it really does make me mad. Doctors return calls to other doctors more quickly than calls from patients. Doctors listen more closely to other doctors than patients. Doctors are more willing to think outside the box when it is another doctor coming up with the suggestion. Not having a single doctor coordinating your care makes this so so so much harder, as you do not get the same deference and attention that would be given another doctor. Therefore you have to go into "bitch mode." All this makes me mad on your behalf. I really admire that you are willing to do what no one else will step up to the plate and do. Keep pursuing your goal of quality of life. You're worth it.

Well, I would have the question of whether 17+ is absolutely necessary to save your life, or just to achieve perfect breathing. If I were you, I would be more in a quest for quality of life, which means restful sleep.

This is an interesting thought. You want to not feel like shit, not score an "A" on your breathing report card.

Another excellent point, Snug. I may have to quote you to my "people" when they get on me about making changes without permission. Nice "one-liner" to make my point.

I'd still first try " bilevel IPAP 11, EPAP 6 " for a nap in the recliner. That might give you an idea if lowering the IPAP (as drastically as I would) helps at all. You can always keep tweaking as the naps (and nights in bed) go on. That's just where I'd start...at a rather extreme lower point than the free-rein very high IPAP swings they've had you using for so long.

If big pressure swings up to a high IPAP have been the main culprit (probably not the only culprit...there's always "pain" to consider) in disturbing your sleep, drastically reducing the IPAP might provide a clue. Or...might not. There could be so many changing factors going on, that trying to zero in on one aspect of your therapy at a time may not produce an "AHA, so THAT's what's doing it." But for pressure experiments, that's where I'd start -- at this point if it were me.

A "machine nap" never happened yesterday, but after a horrendous night last night, I AM exhausted and will probably go down this afternoon, so I'll be sure to get hooked up and will give those settings a try. Thanks.

I'm still struck by how the Limb Movements they noted in both your studies almost always happened only in REM. Not in any other stages of your sleep where, as far as I know...and I'm not a doctor... true "PLMD" (periodic limb movement disorder) would be expected to be seen.

Those limb movements you had almost exclusively during REM are probably not indicative of true PLMD at all, imho. Plain old "Limb Movements" accompanying the respiratory arousals you were having during REM would be my guess about those movements. Not "PLMD" (a separate sleep disorder of its own) at all.

I'd not be trying to treat what likely is not there in the first place. In other words I'd not use Mirapex, or any med, in an attempt to treat "PLMD" that I don't believe is really even there in your case. I wouldn't want any extra meds that are not absolutely necessary added to the mix. But I'm no doctor.

I agree with this. I have been trying desperately to get a hold of my doctor to discuss the Mirapex because I'm thinking just like you -- whatever leg movements I have, even if they cause arousals, are not something Mirapex is going to fix. And the LAST thing I need is another medication in my system, especially one that isn't doing anything.

[Madalot]

Well, well, well...

I am now the OWNER of my respiratory equipment. That's a done deal. Still a little puzzled by it, but it is what it is. And since I own it, nobody is going to tell me I can't change the settings (I can be bitchy that way). The DME said they don't have a problem with it, but asked if there was any way my doc would write an order allowing me to self titrate. Surprisingly, she said she felt I have a good understanding of this and thought it would be fine, wrote an order to that effect and emailed it to me within 15 minutes of my asking for it.

So now, I can change the settings (within guidelines doc specified but those guidelines are very liberal) and everybody's butt is covered (except mine, but that's okay). So, if change something and hurt myself, everybody else has been cleared of any liability.

Being able to monitor my treatment is another issue, but I am working on that as well and *may* be able to get that handled "in-house (my house)" if things work out.

So, I plan on trying Rested Gal's suggestions the next time I get hooked up and we'll go from there.

I think what I will do is set up Primary & Secondary settings on the vent. Primary will be my current settings so I can easily switch back to them when necessary and Secondary settings will be whatever I happen to set up at the time...

I am now officially in charge of my own treatment & therapy. Maybe we need a little prayer now...

"Lord, please don't let me screw up." --

[Lori Dawn]

Oh, Maddie!

I AM SO HAPPY ABOUT THIS! You are in control of your OWN treatment! You ARE PERFECTLY CAPABLE of making these decisions!

See, "For where two or three are gathered together in my name, there am I in the midst of them. " Matthew 18:20
And I know there have been MANY MORE THAN TWO OR THREE people praying for you, INCLUDING ME! Prayers DO GET answered, even if you don't see a way when the prayers go up!

I am so completely excited for you about this new turn of events! I continue to PRAY! Believe WITH US that you WILL find a solution to give you back your quality of life!

I'm so tickled for you, I can't even stand it!

Lori "QF" Dawn

[jbn3boys]

Excellent news, Maddie! I'm glad you have your doctor's blessing (and guidelines) to do your own work on this!

If Rested Gal's solution doesn't work, another thing I would try is to lower the upper limit of your IPAP. If you are having issues at 17-19, then lower the upper limit to 17 (or even 16). Maybe if you don't get up that high, you will sleep better. The machine may not respond to ALL events, but like others have said, you are not going for an "A" on this test!

By the way, WHICH machine do you actually own? The one that is still "in the shop"? Any idea when that one might be coming back to you?

[Madalot]

I AM SO HAPPY ABOUT THIS! You are in control of your OWN treatment! You ARE PERFECTLY CAPABLE of making these decisions!

I am happy about it too. I still intend to be careful, but at least now I have "permission" to modify my treatment/therapy as I see fit and can experiment. Caution is still required, but...it's good.

If Rested Gal's solution doesn't work, another thing I would try is to lower the upper limit of your IPAP. If you are having issues at 17-19, then lower the upper limit to 17 (or even 16). Maybe if you don't get up that high, you will sleep better. The machine may not respond to ALL events, but like others have said, you are not going for an "A" on this test!

I was leaning towards this as well, lowering the maximum IPAP. Depending on the changes I test, I will be sure to wear my pulse ox monitor to make sure I'm not causing any serious issues.

By the way, WHICH machine do you actually own? The one that is still "in the shop"? Any idea when that one might be coming back to you?

I own my original machine, which is in the shop. I have requested that unit back since it will be upgraded to current status with both software and hardware. I am hoping that maybe, just maybe, some of my issues may be resolved with current hardware & software. I spoke to the DME about it this morning and they don't have an estimated return date, but promised to stay on top of it.

[jbn3boys]

By the way, WHICH machine do you actually own? The one that is still "in the shop"? Any idea when that one might be coming back to you?

I own my original machine, which is in the shop. ... I spoke to the DME about it this morning and they don't have an estimated return date, but promised to stay on top of it.

Gotta love that...no idea! We sure hate waiting, even when it's technically YOU that is waiting, and not us!

[JohnBFisher]

I'm still working on all of this, from numerous angles. I need to make a decision about Mirapex (whether to keep taking it, increase the dosage or give up on it)

I'm still struck by how the Limb Movements they noted in both your studies almost always happened only in REM. Not in any other stages of your sleep where, as far as I know...and I'm not a doctor... true "PLMD" (periodic limb movement disorder) would be expected to be seen.

Those limb movements you had almost exclusively during REM are probably not indicative of true PLMD at all, imho. Plain old "Limb Movements" accompanying the respiratory arousals you were having during REM would be my guess about those movements. Not "PLMD" (a separate sleep disorder of its own) at all.

I'd not be trying to treat what likely is not there in the first place. In other words I'd not use Mirapex, or any med, in an attempt to treat "PLMD" that I don't believe is really even there in your case. I wouldn't want any extra meds that are not absolutely necessary added to the mix. But I'm no doctor.

Madalot, actually the movements during REM state are a sign of REM Behavior Disorder (RBD). It might indicate problems with the control system that normally will disengage your muscles during REM sleep. There are medications that can address this. IF they interfere with your sleep then some medications can help. However, if you remain in REM and the movements are not so violent that you will hurt yourself or your husband, then it may not warrant any action. Both conditions appear to be true. Of course, this is just a layman's thought on this. You might want to discuss this with your doctors.

[robysue]

Madalot,

Wishing you the best as you start this new chapter in your journey towards finding a good night's sleep.