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Jeannie McClelland

Sleep Apnea and CPAP

11 posts in this topic

Have you all checked out the new page on Sleep Disorders and Scleroderma? Wow, once again the International Scleroderma Network has come through for me right when I needed it. I would have sworn I could not possibly have sleep apnea. I don't snore, talk in my sleep, wake up with a gasp, or have most of the other symptoms. This past 7 months or so, I have had worsening wakefulness and wild dreams when I did manage to fall asleep, so I gave in and agreed to a sleep study, although I really didn't want to. Yep, sleep apnea. I'm just over the border from mild to moderate, but that's enough to prevent me from getting enough REM cycle sleep. :yawn:

 

So, of course, the sleep center prescribed CPAP (continuous positive air pressure) and I was presented with a choice of masks that left me in a major panic attack (claustrophobia going on here). Thanks to a really great doctor who is a 'fellow' in the sleep center and who has an awful lot of patience and empathy, plus some research and some rooting around in cupboards (honestly), I've now got a thing that looks very much my normal O2 cannula, but with thicker tubing. I've managed 3 hours on it each of the last two nights and am shooting for at least 4 hours tonight! Rock on, maybe a good solid 8 hours of sleep soon!!

 

It would still have been tough to talk myself into using the CPAP, if it weren't for the info on the Sleep Disorders and Scleroderma page and what a friend's mom (who has pretty severe pulmonary hypertension) told me last week. She also has moderate sleep apnea and using the CPAP has brought her mean pulmonary artery pressure down to high normal. Who'd have thought?

 

So I guess my message is: if your doctor recommends a sleep study or you think you might have sleep apnea, it's worth checking out. One more good thing we can do for ourselves.

 

Oh yeah, the other thing is that the handsome hubby and I now have matching CPAP machines! The one downside is that there isn't a lot of room on the bedside tables for the usual clutter. Or is that a good thing? :blush:

 

Sleep well, everyone!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I love the image of you and your husband with matching CPAPs, now that's togetherness!! :happy1-by-lisa-volz: :girly1-by-lisa-volz:

 

My pulmonologist recommended a sleep study last Spring, I blew her off. No way I have sleep apnea, I have no problem sleeping, I can fall asleep at a long red traffic light! She insisted I should have one done, I told her I'd consider it, then left the office and didn't give it another thought..Then my rheumatologist told me this month, after I complained again about excessive fatigue, that I should have a sleep study too, said sleep apnea is also associated with high blood pressure, which he newly diagnosed me with. Like you, Jeannie, I don't snore, wake up with gasp, etc, but I do immediately start dreaming as soon as I fall asleep and always wake up in the middle of a dream, 5 or 6 times a night.

 

So I spent Halloween night in an awesome sleep study costume complete with wires, electrodes, tubes in my nose and breathing straps on my chest and stomach! (They should have at least given me some trick-or-treat candy!) As usual, I fell asleep almost as soon as the lights were turned off, dreamt the night away and left thinking what a waste of insurance money. But now they've called and want me to come in for a follow up visit, wouldn't give me the results over the phone, I guess that means it was abnormal, I'll find out on the 17th and will let you all know...

 

All I know is my husband is already putting up with being randomly struck with my hand splints during the night <_< ...wonder what he'll say if I need the CPAP too!!

 

Trying to hang in there,

red

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Some couples will do just anything to be the same, do you have a pink one and hubby a blue one? I bet you're both a sight to see! :lol:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hmmm, I wonder if the 'masks' are available in colors? I could color-coordinate with my jammies!

 

Himself wears a thing that has a nose shaped rubbery piece (and the hose connects with that) and it's held in place by a web of elastic straps. Remember the old Farscape telly series? Think the villain 'Scorpie'! :lol: I'm so glad he got his first by several years - he doesn't dare laugh at me~ Well, not if he hopes for any more hot dinners!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Jeannie

 

That's a very interesting study on Sleep Apnea. It must be wonderful to be able to get a reasonable nights sleep at last with your co-ordinated masks. :)

 

I've had 'Restless Legs Syndrome' but never associated it with Scleroderma before reading that study. Unfortunately our sleep patterns are frequently disturbed by 35 kilos of solid labrador dog, who despite having a comfy bed of his own, very much likes to share ours!! ;) :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Well, as it happens, I suspect that I may have sleep apnea as I often wake with a gasp and kind of feel as though I have forgotten to breathe.

Also I have slept badly for years.

 

However as I have very recently embarked on a lovely relationship I don't think I am quite ready to introduce the masked look yet. Something else to look forward to!

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Hey friends, looks like you are finally joining the C-Pap group. I went from the Bi-Pap to the C-Pap to N O Pap machine. I have successfully graduated and hopefully won't have to go back on it for awhile, if ever. Everything in my test results now are pretty good. So long, fare well, I hope I never see it, a g a I n.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Vanessa...hey, all you need to do is introduce any medical equipment (CPAP, oxygen, cane, seeing eye dog, whatever) as being the most incredibly sexy thing ever, and with that attitude, your guy (and everyone else) will happily conclude you are right. Seriously!

 

Last week my husband was having cataract surgery. With his dim eyesight beforehand, I kept telling him that when he was able to see again, he'd see that his wife was, indeed, very beautiful!

 

Low and behold, he got out of surgery, beheld my countenance, and exclaimed how beautiful I was.

 

Attitude, girl, it's all in the attitude!

 

:happy-day:

 

Thank goodness, or otherwise, most of us would have sunk the romance ship a long time ago. :o


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Jeannie, red, Vanessa, Joelf, Amanda and Shelley,

 

I'm rolling on the floor in hilarious mirth ....and I can't get up, (I'll have you know!)

 

What a wonderful exchange here...I LOVE it :emoticon-hug:

 

But seriously though, Ladies...wouldn't you think that by now...they would have "Designer" CPAPs"?!

...I'm just sayin'... :rolleyes:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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