My Situation - FIRST NIGHT ON MY OWN

JohnBFisher wrote:

rested gal wrote:

Madalot wrote: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.

Thanks, John & Rested Gal. Good information to have. I asked my pulmo about this and I can't remember exactly what she said, but she seemed unconcerned about the movements being only in REM sleep. I am waiting to hear back from my neurologist and will ask him specifically about RBD and if that changes how he feels about all of this. One thing I DO know is that Mirapex isn't changing anything.

The limb movements don't bother me other than the fact that half of them result in arousals. I apparently don't move enough to disturb my husband, so I really wouldn't care if not for the arousals.

robysue wrote:Madalot,

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

Thank you. Let's hope this journey goes more quickly than the first one.

Congratulations!!!

Hope it really works out like they're saying it will.

This is great news. Now to figure out what combination works best.

I set up the vent with Dual Prescriptions, leaving the Primary in S/T AVAPS at the regular settings. I set up the Secondary as BIPAP S/T, 14/6, with all the other settings the same as the Primary. Rested Gal, I went up to 14 for IPAP because I need a certain amount of inhale pressure to ease my breathing and 14 seems about right. I used my pulse ox monitor to make sure everything was okay.

It wasn't bad. I woke up a few times, but it didn't SEEM as though I woke up as often. I have a bit of headache this morning, but I think we're supposed to be getting rain so it may be from that. My overnight pulse ox report shows NO desaturations and my lowest 02 level was 92%. There seemed to be a period around 1am where I tried to desat a bit, but seemed to hold my own to prevent a real desaturation.

I don't want to get my hopes up, but this wasn't too bad. I'll see how I feel today and if seems like I'm okay, I'll try these settings again tonight and see how it goes.

I'm still open for input & suggestions on any changes that anyone feels may be helpful.

Wouldn't it be an absolute riot if your first night "on your own" w/your medical professionals' blessings you were able to come up w/something that works BETTER than anything they've been able to come up w/so far???? I would so love the irony of that! So I"m cautiously optimistic here, Maddie. (((hugs))) Fingers crossed, prayers being whispered.

Slinky wrote:Wouldn't it be an absolute riot if your first night "on your own" w/your medical professionals' blessings you were able to come up w/something that works BETTER than anything they've been able to come up w/so far???? I would so love the irony of that! So I"m cautiously optimistic here, Maddie. (((hugs))) Fingers crossed, prayers being whispered.

It would be a hoot, that's for sure. I'm cautiously optimistic, too. Don't want to get too excited or hopeful, but at least if something doesn't feel right at any given time, I CAN just change it to make it better. I think I may have to do some tweaking, but last night was positive for the most part.

Thanks for the good wishes.

Madalot wrote:

Slinky wrote:Wouldn't it be an absolute riot if your first night "on your own" w/your medical professionals' blessings you were able to come up w/something that works BETTER than anything they've been able to come up w/so far???? I would so love the irony of that! So I"m cautiously optimistic here, Maddie. (((hugs))) Fingers crossed, prayers being whispered.

It would be a hoot, that's for sure. I'm cautiously optimistic, too. Don't want to get too excited or hopeful, but at least if something doesn't feel right at any given time, I CAN just change it to make it better. I think I may have to do some tweaking, but last night was positive for the most part.

Thanks for the good wishes.

First thread I read this morning, and I'm enjoying my coffee even more now. Your new direction sounds very promising, Maddie! And hey, even though your situation is more complicated than most here, we all need to tweak our therapy; at least you're now in a position where you can do it yourself, without having to wait for anyone else's approval. I hope you feel better throughout the day than you normally do.

Rock on, woman!

BleepingBeauty wrote:

Madalot wrote:

Slinky wrote:Wouldn't it be an absolute riot if your first night "on your own" w/your medical professionals' blessings you were able to come up w/something that works BETTER than anything they've been able to come up w/so far???? I would so love the irony of that! So I"m cautiously optimistic here, Maddie. (((hugs))) Fingers crossed, prayers being whispered.

It would be a hoot, that's for sure. I'm cautiously optimistic, too. Don't want to get too excited or hopeful, but at least if something doesn't feel right at any given time, I CAN just change it to make it better. I think I may have to do some tweaking, but last night was positive for the most part.

Thanks for the good wishes.

First thread I read this morning, and I'm enjoying my coffee even more now. Your new direction sounds very promising, Maddie! And hey, even though your situation is more complicated than most here, we all need to tweak our therapy; at least you're now in a position where you can do it yourself, without having to wait for anyone else's approval. I hope you feel better throughout the day than you normally do.

Rock on, woman!

Thank You! I didn't feel too great when I woke up, but I don't feel any worse now than I usually do, so I consider that a good thing.

I'm very happy knowing that I can "tweak" my therapy (even nightly if necessary) to get as much comfort as possible out of this. It IS liberating.

Madalot wrote:The limb movements don't bother me other than the fact that half of them result in arousals.

It's more likely the other way around... arousals (and the subsequent recovery breaths) causing the limb movements. Or more precisely, respiratory events (apnea/hypopnea) causing an arousal that is accompanied by a limb movement.

REM is when most apneas hit most people. When an arousal happens to get you breathing again, the physical effort to start taking breaths again could cause the body to jerk... like a leg twitch or leg movement during the recovery breaths you'd be taking immediately after the arousal. The arousal and resumption of breathing could cause the "limb movement."

rested gal wrote:

Madalot wrote:The limb movements don't bother me other than the fact that half of them result in arousals.

It's more likely the other way around... arousals (and the subsequent recovery breaths) causing the limb movements. Or more precisely, respiratory events (apnea/hypopnea) causing an arousal that is accompanied by a limb movement.

REM is when most apneas hit most people. When an arousal happens to get you breathing again, the physical effort to start taking breaths again could cause the body to jerk... like a leg twitch or leg movement during the recovery breaths you'd be taking immediately after the arousal. The arousal and resumption of breathing could cause the "limb movement."

Very well could be. It's difficult for me to know (or completely understand) since nobody seemed interested in the limb movements after my last study. They focused on supine sleep and didn't address the limb movements until I mentioned them.

But I really do NOT know if apneas/hypopneas are causing the movements or the other way around.

Madalot wrote: Very well could be. It's difficult for me to know (or completely understand) since nobody seemed interested in the limb movements after my last study. They focused on supine sleep and didn't address the limb movements until I mentioned them.

It may be that you had clear enough evidence of sleep breathing problems that limb movement isn't interesting yet. I think limb movements are mostly a sleep concern because they wake you up, at least partially. They may be thinking that until they get you breathing well all night long, worrying about limb movements is less important.

I think that many of the limb movement treatments have large potential for side effects as well, so they may want to take care of more serious problems first.

archangle wrote:

Madalot wrote: Very well could be. It's difficult for me to know (or completely understand) since nobody seemed interested in the limb movements after my last study. They focused on supine sleep and didn't address the limb movements until I mentioned them.

It may be that you had clear enough evidence of sleep breathing problems that limb movement isn't interesting yet. I think limb movements are mostly a sleep concern because they wake you up, at least partially. They may be thinking that until they get you breathing well all night long, worrying about limb movements is less important.

I think that many of the limb movement treatments have large potential for side effects as well, so they may want to take care of more serious problems first.

Actually, I had very few breathing difficulties during the last sleep study. Granted, it was on bipap s/t using AVAPS, so it's not surprising really that I had few respiratory events (none as long as I was on my side). The purpose of the study (or so I thought) was to try to figure out why I wake up so much and that's what got us considering the limb movements.