Sleeping Position - Therapy Suggestions???

[Madalot]

Well, I figured it wouldn't last. And naturally, it didn't. Since my disease is progressive, this is expected I suppose.

For anybody that doesn't know me, I have a rare Muscular Dystrophy, causing diaphragm muscle weakness when I sleep. I most likely have OSA as well, making therapy tricky at best. I use a ventilator (Trilogy 100) with Bipap S/T settings, using AVAPS (Average Volume Assured Pressure Support).

I have been told no sleeping on my back, which hasn't been a problem since I am a side sleeper. My ventilator settings (AVAPS, IPAP 15-23, EPAP 9, RR 7, TV 400) work well on my side. Ventilator downloads show everything is good.

Over the last few weeks, I've been waking up 2-3 times a night (not this again!!!) in a lot of pain. I turn over and go back to sleep, but again wake up in pain a few hours later.

This morning, I flipped on my back to rest a minute and found the pain was significantly better, stayed there longer than planned and dozed off. This is a big "no no" for me, therapy wise.

My last sleep study (April 2011) -- the settings were all increased, even tidal volume, to compensate for back sleeping. We agreed that as long as I stayed off my back, the lower settings were better. The higher settings are almost TOO HIGH for side sleeping. I know they raised the EPAP to 12 and I shudder to think of that when trying to fall asleep.

If pain wise, I have to spend some time on my back -- any suggestions/ideas? I want to spend as much time as is tolerable on my sides, but fear I won't be able to avoid some back sleeping now.

I'd ask my sleep doctor, but I haven't met him yet so technically, I don't have a sleep doctor at this point. I don't see my pulmonologist again until October.

Any ideas?

[robysue]

Madalot,

No suggestions off the top of my head. But a question: What kind of pain? As in where does it hurt and any idea on what might be causing it? Because "what to do" may depend strong;ly on "what's causing the pain in the first place?"

[Madalot]

What kind of pain? As in where does it hurt and any idea on what might be causing it? Because "what to do" may depend strong;ly on "what's causing the pain in the first place?"

The pain is mostly muscular, but some areas (like my left thigh) is also nerve pain. Before therapy, I must have realized that I could breathe better on my left side and slept that way most of the time. The "theory" is that I badly irritated the nerves in that thigh that the pain is now constant.

I take gabapentin through the day (300mg twice a day, then 600mg at bedtime), 100mg tramadol at bedtime, and ibuprofen through the day. This keeps my pain level around 3-4, assuming I don't do too much to exacerbate my leg pain.

Apparently, laying in one position too long causes muscle/nerve pain that wakes me up, forcing me to move. Laying more on my right side is starting to show signs of the aggravation I've already got on my left side.

I'm also finding that I must be fisting my hands while sleeping and when I wake up, I can't straighten my fingers without horrible pain. I can probably solve that by wrist/hand braces that won't allow the fingers to bend, but I haven't gotten that far as of yet.

[imsleepynomore]

My heart goes out to you I understand pain waking you up and the need to turn frequently due to pain. I wonder if a different mattress would help that painfull leg , also ask your doctor if an increase in Gabapentin is in order it does take a while for it to build up but can help a lot with nerve pain and your dose is not too high at this time. Good luck, keep us informed

[SockPuppet]

I have been told no sleeping on my back

What is the reason for this?

[Gerald?]

Madalot

I take it "the falcon" isn't an option either?

[Gerald?]

Madalot

Have you thought about trying what Mars did and looking at using a cervical collar to help keep your airway open when on your back, or perhaps an adjustable pillow to do the same thing?
Here is the one Mars ended up with.

http://www.the-pillow.com.au/more/compl ... s_more.php

[Madalot]

My heart goes out to you I understand pain waking you up and the need to turn frequently due to pain. I wonder if a different mattress would help that painfull leg , also ask your doctor if an increase in Gabapentin is in order it does take a while for it to build up but can help a lot with nerve pain and your dose is not too high at this time. Good luck, keep us informed

We're stuck with our mattress at the moment. I did purchase a hospital-grade mat that helped at first. I have another new one and will probably put it on the bed to see if it helps. As far as my pain meds, I might increase the gabapentin (with my docs approval) but I need to get in touch with him first. I'm not overly fond of this, though, as I hate taking pain meds.

Have you thought about trying what Mars did and looking at using a cervical collar to help keep your airway open when on your back, or perhaps an adjustable pillow to do the same thing?
Here is the one Mars ended up with.

http://www.the-pillow.com.au/more/compl ... s_more.php

I know from experience that sleeping with a collar is hard for me. But it might be worth thinking about a wedge for back sleeping. I find I can't sleep on my side with a wedge.

My last sleep study indicated more apneas and problems on my back. To eliminate the apneas supine, they had to increase my settings significantly. Because I typically don't sleep on my back, they agreed to leave the lower settings as long as I slept on my side.

I'm concerned that waking up in pain will force me on my back.

I guess another option for me is to use the dual prescription on the ventilator, setting the secondary settings for supine sleep. The problem is my sitting up and changing the settings when the pain makes side sleeping difficult.

The other problem I have is that I really don't have a doctor, right now, to run this by. I will ask my RT about it (I have a email in to her) but she really can't authorize my doing this. Plus, all I can really do is look at the report from the last study and use the settings they used.

[MidnightOwl]

Hi Madalot,

Would elevating the head of the bed slightly help your breathing on your back without making the pain worse? That could be pretty cheap to test out - sticking blocks either under the legs of the bed or under the frame or mattress depending on your bed style.

Wishing you a quick solution to this latest.

Owl

[Madalot]

Madalot

I take it "the falcon" isn't an option either?

I missed this earlier. What is this???

Would elevating the head of the bed slightly help your breathing on your back without making the pain worse? That could be pretty cheap to test out - sticking blocks either under the legs of the bed or under the frame or mattress depending on your bed style.

Our current bed wouldn't allow this. If I were going to go this route, I believe I would have to invest in an adjustable bed of some type. Not an option financially at the moment, but something to consider down the road.

When I sleep on my side, I need to be as flat as possible. I was using a wedge for a while, but I simply cannot get comfortable on my side. An adjustable bed would be the best solution, allowing me to elevate the head *IF* I needed to turn on my side. I just do not see buying one in the cards anytime soon.

You all keep the thoughts and ideas coming! I appreciate all of them.

[jnk]

Madalot

I take it "the falcon" isn't an option either?

I missed this earlier. What is this??? . . .

wiki/index.php/Sleep_Positions

It may be possible to raise the head of the bed with some blocks your husband could make for you, like these:

http://www.giblock.com/

You may need to find a happy medium (somewhere between optimal therapy and maximum comfort) with EPAP if you will be spending some time on your back, with doc permission.

You may need to view the 2-3 awakenings as a good thing if it allows you to switch sides a few times a night.

Just random thoughts/observations from a fellow patient, because I know you run everything by a pro first.

[Madalot]

Madalot

I take it "the falcon" isn't an option either?

I missed this earlier. What is this??? . . .

wiki/index.php/Sleep_Positions

Thanks, Jeff!

I used to sleep like that a lot (my husband does it now frequently himself). I find that to be one of the most comfortable positions, although I never had my arms exactly as described.

With my muscular disease, that position is too hard to get in/out of. Shoot -- turning from side to side isn't easy for me either!

I wish I could sleep in "the falcon" position.

I'm leaning more and more towards having a "supine" setting on the ventilator for those nights when pain won't allow anything else. I'm concerned, however, that I will be too sleepy/lazy to bother switching the settings. I have the documentation from that study and the Tech/RT outlined exactly what he changed. I need to figure out HOW to get that authorized.

[jnk]

. . . I wish I could sleep in "the falcon" position. . . .

The trick, for you, may be to follow Dr. Falcon's suggestion to use a pillow to elevate slightly one side of your torso. That way it would be partially prone, partially side, in a sense. I understand that it may not work for you now, but some experimentation may help you to make sure either way. If going partially prone takes some stress off the muscles/nerves on your sides, that may be key to continuing to get some benefit from side sleeping a while longer.

It may work in combination with the blocks that I mentioned, and linked to, above. Or may not.

I hope you get many more suggestions here from others.

[Madalot]

. . . I wish I could sleep in "the falcon" position. . . .

The trick, for you, may be to follow Dr. Falcon's suggestion to use a pillow to elevate slightly one side of your torso. That way it would be partially prone, partially side, in a sense. I understand that it may not work for you now, but some experimentation may help you to make sure either way. If going partially prone takes some stress off the muscles/nerves on your sides, that may be key to continuing to get some benefit from side sleeping a while longer.

It may work in combination with the blocks that I mentioned, and linked to, above. Or may not.

I'm not sure my husband would be okay with the bed being elevated. I haven't had a chance to even tell him about this latest issue. I need to update him and tell him of the ideas. He would be able to tell me immediately *IF* raising our bed would be an option.

I'll let you know what he says after I speak to him, but that could be late tonight or tomorrow. I also expect to hear something from my RT today, as I hope to run this by her as well.

[Madalot]

My Respiratory Therapist just emailed me. She is going to discuss this in more detail with the RT Supervisor (great guy), but their initial thought is using the dual prescriptions on the Trilogy. They are also concerned, however, about my switching it in the middle of the night.

I have my regular RT visit next week, so we'll discuss it more then.

I think I WILL set the secondary settings to the ones used for supine sleep during my study. At least *IF* I find I must sleep on my back, I have it already set up the way they did and can use it.