Need Input (updated last nights chart)

[macewa]

Hi all,

Happy to report that last night I had one of my best nights numbers wise. AHI of 1.18 and when looking at the report, most of the activity was during the first hour when I was awake and fighting discomfot. After that hour my report only shows 1 Hypopena, 1 Obstructive, 1 Central and 5 Flow Limits. I'm not sure what the flow limits are about unless those were due to my almost arousals from pain (see below).

My problems were:
(1) I wear a silk head scarf peasant style (doubled material) under the mask to keep my hair from breaking off. I have lost a lot of hair from the straps rubbing and pulling against it. This causes my head to itch like crazy when I first put it on and try to go to sleep. Any suggestions?
(2) Then I have to pull the mask straps very tight to stop leaks. My head is extremely sensitive (always has been) and I had several partial arousals due to pain from the straps on my head. I am currently taking a med to help me with this and I'm sure it helps but obviously not all the time Any suggestions?
(3) I am starting to feel the heat and that makes my mask (total face mask) stuffy. I doubt there is anything I can do about that. Using the humidifier on low setting does help that some. But hot summer is coming and due to my allergies, I cannot run my swamp cooler (cooling devise not as good as air conditioning). I do have a window unit in my living room, but who wants to have all of the equipment in their living room (BiPAP and oxygen concentrator).

I had upped my number to EPAP 14.5 and experienced the horrible nose problem I had back in September when my numbers were much higher and on straight BiPAP. I reduced it back down to EPAP 14 and my nose is better this morning and so are my numbers.

Hopefully my numbers 23/14 on auto BiPAP are going to work for me. I just have to realize I might have a bad night. But what worries me now is that the discomfort factor on a scale of 1 to 10 with 10 be worst is a 15. I really had to struggle last night to stay with the mask on. I talked myself into not taking it off and finallly fell asleep.

All suggestions welcomed. Thanks in advance.

[xenablue]

A silk scarf would be way to slippery for me to keep everything in place, and protect my hair.

I use a PapCap, which is 100% cotton. You can use it just as a skull cap or with the velcroed strap for a chinstrap (I've done both). Yes, it flattens your hair, but it protects my hair, stops my headgear from attacking my hair, keeps everything in place so less leaks and mask movement.

cheers,
xena

[robysue]

macewa,

Are you at the start of your first summer season with the mask? Or did you get through last summer OK with the mask?

Last summer here in Buffalo (where we hardly have "heat" by anybody's standards but a native Buffalonian's) I had to bite the bullet and face the fact that I'd need to run the AC on any night that threatened to be warm and/or humid. I hate AC. And I really mean I loathe it. Pre-CPAP it would have to be super hot at night before I'd consider turning it on. But I was so clearly uncomfortable in even mildly warm, humid weather that hubby insisted that I get over my reluctance to turn on the AC. And he bought me a new central AC unit to boot. (Which, in this transplanted Southerner/Midwesterner's is totally unwarranted in a typical Buffalo summer, but hey, sleeping with a bunch of plasticy-silicon stuff on your face trumps whether the AC is really warranted by the weather.)

I bring this up as a way to suggest the obvious, but not necessarily most affordable or appropriate solution: If you can afford it, give some serious thought to upgrading your cooling equipment so that you can sleep in the long NM summers.

[macewa]

This will be my first summer. As far as resolving this to my liking, I can't - money is a real problem.

I do have a window unit in the living room, but that means I have to move both my BiPap and Oxygen Concentrator into the living room area, open up the sofa bed and it's just a freaking problem.

I will do that I'm sure, but if really upsets me that to deal with this sleep apnea I have to do so many things that are not to my liking, i.e. having to wear something to try and keep my hair from breaking off, meaning I wear even more stuff to bed. Now having to move to my living room and who wants all this "you know what" in their living room and my living room is not that large.

This OA has totally taken over my life. I guess no matter what, I really will never get my life back. I so totally understand why people walk away from this. I wish I could say that things are better 7 months into this, but it's not. I just seem to get worse. One thing seems to get solved and another or two pop up. My charts are better, but now I'm losing my hair and look like crap, have pain during the night, still not much energy, and now having to move out of my comfortable bed to the uncomfortable sofa bed.

I'm still on Ritalin so I don't fall asleep during the day and now take pain meds at night and I had surgery on my deviated septum in hopes it would help. No one I know in "real" life has these problems with their apnea. I know people are going to say I'm whining and it's better than being dead; but I hate it now and I didn't in the beginning. I was so optistimistic and eagar to do what was needed. You know, it's bad enough to have to wear all this freaking stuff, but all the other just adds insult to injury.

Thanks for your response. I do appreciate it.

macewa,

Are you at the start of your first summer season with the mask? Or did you get through last summer OK with the mask?

Last summer here in Buffalo (where we hardly have "heat" by anybody's standards but a native Buffalonian's) I had to bite the bullet and face the fact that I'd need to run the AC on any night that threatened to be warm and/or humid. I hate AC. And I really mean I loathe it. Pre-CPAP it would have to be super hot at night before I'd consider turning it on. But I was so clearly uncomfortable in even mildly warm, humid weather that hubby insisted that I get over my reluctance to turn on the AC. And he bought me a new central AC unit to boot. (Which, in this transplanted Southerner/Midwesterner's is totally unwarranted in a typical Buffalo summer, but hey, sleeping with a bunch of plasticy-silicon stuff on your face trumps whether the AC is really warranted by the weather.)

I bring this up as a way to suggest the obvious, but not necessarily most affordable or appropriate solution: If you can afford it, give some serious thought to upgrading your cooling equipment so that you can sleep in the long NM summers.

[Beth T.]

Could you move your window unit to your bedroom or look for one on sale for your bedroom? I'm sorry you're going through all this

[BlackSpinner]

Silk is both hot,slippery and doesn't breathe - that is why they used it to make parachutes.

Go to a wig store and check out their wig caps. Or find a lacey knit cap. Even cutting off the leg off a pair of lycra tights and tieing a knot in it will work.

If you are a knitter you could make a smaller, shorter version of this

[macewa]

Oh Beth, I wish I could, but my bedroom window when it's open is more vertical and the living room window is horizontal. Plus I have no one to help me. Also, my bedroom even though my house is just one story, is over my basement and is isn't on ground level. No way I could do that or fix something to block the part of the window that is open. I can't afford to pay anyone to do it either. So, the living room is where the small airconditioner is and it's costly because the living room goes into the dining room (no door I can close) and air escpaes into that room and the kitchen. What I failed to mention in my other post too, is that this is a very old house and there aren't a lot of electrical outlets. Even now, I have my oxygen concentrator plugged into a kitchen outlet. Nothing in this freaking house is easy and now with all this stuff it's worse. I usually try not to use the air conditioner because of cost, but I know now, that won't be an option.

Could you move your window unit to your bedroom or look for one on sale for your bedroom? I'm sorry you're going through all this

[macewa]

Wig store is not an option. I live in a town that is somewhat removed from everything.

I have knit caps but don't you think that would be hot? Hot is starting to be an issue here. Starting in July we have monsoon season and they say this year is supposed to be bad - so that means heat and humidity.

I'll try the lycra tights leg tonight and see how that goes. You don't think it will be hot and slippery too? The thing with the silk scarf was that it also acted as a mask liner and helped stop leaks.

The way my hair looks makes or breaks the way I look and right now, it is awful! (really, I'm not exaggerating) It's so thin and straggley. I know it's vain, but I'm really not ready to look like an old woman (even if I am and my hair has always been the best feature I have). This has been difficult enough without having to deal with this too.

I am so conflicted as I look forward to going to bed so I can see if my numbers are staying low (next morning) and then I also dread going to bed because I know my hair is suffering and that I will have pain.

Thanks for the suggestions.

Silk is both hot,slippery and doesn't breathe - that is why they used it to make parachutes.

Go to a wig store and check out their wig caps. Or find a lacey knit cap. Even cutting off the leg off a pair of lycra tights and tieing a knot in it will work.

If you are a knitter you could make a smaller, shorter version of this

[macewa]

I will also look this up. depends on what they cost. I start every month about $200 in the hole - makes life interesting.

A silk scarf would be way to slippery for me to keep everything in place, and protect my hair.

I use a PapCap, which is 100% cotton. You can use it just as a skull cap or with the velcroed strap for a chinstrap (I've done both). Yes, it flattens your hair, but it protects my hair, stops my headgear from attacking my hair, keeps everything in place so less leaks and mask movement.

cheers,
xena

[BlackSpinner]

I have knit caps but don't you think that would be hot? Hot is starting to be an issue here. Starting in July we have monsoon season and they say this year is supposed to be bad - so that means heat and humidity.

I'll try the lycra tights leg tonight and see how that goes. You don't think it will be hot and slippery too? The thing with the silk scarf was that it also acted as a mask liner and helped stop leaks.

It depends what they are knit from. If you can knit, knit very loose.
The lycra - it depends on the fibre and the knit.
The thing with fine smooth silk is that it really doesn't breathe.
If you have an old tshirt, maybe you could turn that into a hat and mask liner.

[DrPepper00]

Here in Washington, we hardly ever need a/c so I didn't want to permantly block my window. I bought a portable a/c that vents out the window. It can be installed in a slider window and the vent is easily removed when an open window is preferred. Click on more views under the picture to see how the vent fits in the window. I know it is expensive, but it will give you an idea of what is available.

http://www.homedepot.com/webapp/wcs/sto ... &ci_gpa=pe

[robysue]

I will do that I'm sure, but if really upsets me that to deal with this sleep apnea I have to do so many things that are not to my liking, i.e. having to wear something to try and keep my hair from breaking off, meaning I wear even more stuff to bed. Now having to move to my living room and who wants all this "you know what" in their living room and my living room is not that large.

This OA has totally taken over my life. I guess no matter what, I really will never get my life back. I so totally understand why people walk away from this. I wish I could say that things are better 7 months into this, but it's not. I just seem to get worse. One thing seems to get solved and another or two pop up.

Although I never had to face the problem you've got with broken hair, everything else you've said here could easily have been written by me in May or June 2011 when I was 8-9 months into therapy. But things finally started to turn around for good in late June. There was still a lot of two steps forward, one step back progress during last summer and even into the fall. But once I could finally say I was feeling better with CPAP on some days every single week than I'd felt pre-CPAP, I finally was able to start the hard work of taking my life back from the OSA/PAP + Migraines + TMJ taking over my life.

So---if you can come up with some workable solutions for getting through the summer, I think you'll find that things will eventually start to get better.

My charts are better, but now I'm losing my hair and look like crap, have pain during the night, still not much energy, and now having to move out of my comfortable bed to the uncomfortable sofa bed.

I'd be reluctant to move out of the comfortable bed until the heat really does become unbearable. A silly sounding, but seriously offered idea: Maybe you could put ice cubes in the humidifier and use it on passover mode so the ice doesn't melt too fast?

I'm still on Ritalin so I don't fall asleep during the day and now take pain meds at night and I had surgery on my deviated septum in hopes it would help. No one I know in "real" life has these problems with their apnea. I know people are going to say I'm whining and it's better than being dead; but I hate it now and I didn't in the beginning. I was so optistimistic and eagar to do what was needed. You know, it's bad enough to have to wear all this freaking stuff, but all the other just adds insult to injury.

Again, I understand how much you hate the whole CPAP thing now. My own hatred re-emerged over Easter weekend for reasons that are not completely clear. It had been several months since I'd had that much dislike of the whole CPAP thing (along with my osteoporosis diagnosis). And sometimes you need to whine. And there's no need to apologize for it.

The thing is, you'll continue doing what you need to do simply because you have to. And we'll continue to be here to help you get through the tough stretches ahead as you figure out how to deal with everything + the heat and humidity.

[Mary Z]

I wear a Kufi cap. It's a crocheted cap that just fits on the crown of your head. Google them. Amazon has them and they are not expensive or hot. it's good to have two as they stretch and have to be washed and dried to get their shape back. It sounds like you are still going through the stages of grief in dealing with a chronic illness that seriously impacts your life. Maybe some therapy with a local Community Services Board might help. Please don't be offended, you've had so many problems.

[macewa]

I do therapy and have for quite some time. My whole life has been nothing but trauma with no time to grieve anything. So grieving this is nothing compared to what I've had to deal with in the past. To get my life back I don't care if I have to be hooked up to a machine. But I do care if everynight is filled with pain. I would much prefer not to have my entire face encased in plastic, but if that is the type of mask I have to wear for comfort, then I do it. BUT I still don't have any freaking comfort.

I found a knited cap that a friend of mine made me and I haven't used. I tried it last night and it I still had to add something else to it to cover where the bands are causing my major hair loss. So today I washed it and stretched it out so it will cover my entire head. We will see. The impact of using this was that I had more leaks. Wearing the doubled over silk scarf helped stop my leaks.

Actually I had a horrid night. Maybe I didn't fully wake up but for the first time I was hearing loud nose from the air pressure and to me that means I am leaking somewhere. I have NEVER had a problem falling asleep but lately it is a chore, even with the med the doctor gave me to help with the discomfort and pain during the night. The pill also makes you sleepy. Not me the past couple of nights. Also, my numbers were not as good this morning. AHI was 6.89 with my OA at 3.37 compared to 0.29 the night before and my CAs were 2.64 compared to 0.44 the night before. Go figure.

During the day I'm dealing with that nose burn issue but it doesn't bother me at night when I use the humidifier. But perhaps it is skewing my numbers?

Thanks for your response.

ON ANOTHER NOTE OT: I thought I was seeing smoke outside and went to check on it and it wasn't smoke -- it was a white out from tiny snowflakes. It's snowing but of course not sticking. Very windy. I suspect this is some of the weather moving on that will cause problems for others in other states. Just seeing the snow though, brings a smile to my face. With the winds it is good to be getting some precip as we have had 2 fires break out over the past week. The snow wetness will be helpful.

I wear a Kufi cap. It's a crocheted cap that just fits on the crown of your head. Google them. Amazon has them and they are not expensive or hot. it's good to have two as they stretch and have to be washed and dried to get their shape back. It sounds like you are still going through the stages of grief in dealing with a chronic illness that seriously impacts your life. Maybe some therapy with a local Community Services Board might help. Please don't be offended, you've had so many problems.

[BlackSpinner]

When I use my quatro mask, I make a liner out of old well washed cotton panties so that nothing touches my face. It also helps with the sweatiness.
It means my current liner has pretty little flowers on it.