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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
8/2/13 3:11 P

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Sorry, for missing your post.

I am glad you made it to the doctors in time to embrace this life saving machine. My number was 60 in an hour and even though I fought the mask all night long, I still woke healthier and more alert than I ever had even as a skinny teen. I hope despite the fight with the mask you are noticing an immediate improvement in energy.

When you post again, start a new thread to alert our other members you have joined the team. I look forward to hearing how your first night went. Best of Luck.



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54JIMMY's Photo 54JIMMY SparkPoints: (17,228)
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7/31/13 2:37 P

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I was diagnosed at the beginning of this month with severe OSA. I didn't realize how bad it was until yesterday when I picked up my CPAP machine. From the numbers presented at my follow-up I had 111 apneas in an hour. I was told that 35 was severe and I am three times severe. Since I got home late last night I didn't have time to set up the machine so I will start tonight. I am kind of excited to be on the road to recovery but a little apprehensive on how I will adjust to wearing the mask and the continuous air.
I am sure that I will be referring to the expertise of the team to help me along the way especially during this transformation period. So thanks in advance for all of your advice.

"If all your friends were named Cliff would you jump off of them?" Hugh Neutron

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
7/29/13 6:20 P

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Call the advice nurse immediately. This might not be related to the cpap. I am concerned about your heart.

Please post and let us know how you are doing.

The only time I experienced the breath shortness was after the two major apnea events. One hospitalized me for four days. Can you check your machine to see if you had a prolonged apnea event?

Take it easy until you talk to a medical professional. Maybe take an aspirin too. You aren't getting enough oxygen somewhere.

Edited by: GRAMMACATHY at: 7/29/2013 (18:23)

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GIANNI26's Photo GIANNI26 SparkPoints: (3,227)
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7/29/13 11:20 A

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Some one please help... tell me i"m not crazy...well at least tell me if you have heard about or had this problem. I feel so short of breath today I feel like its hard to breath never ever had this before the cpap machine what do I do.

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
5/28/13 1:58 A

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Yes, the nasal pillows are rough at a lower pressure too. Anyway, I had dried out sinuses and a headache from them.

I understand why you can't use a nasal mask. Leaking is fairly common. Most people tighten their masks too tight trying to stop the leaking and create other problems. A looser mask will leak when you move and then stop when you are still. Loose is better. I roll over and reset my mask on my face and hardly wake to do that anymore. It has become a reflex.



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TRACYDUKA's Photo TRACYDUKA Posts: 951
5/27/13 10:38 A

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I have cysts in my upper lip from a surgery that blocked some salivary glands and the doctor thinks that a nasal mask might irritate it because of the pressure from the mask. I also asked about possibly getting the pillows because that's what my Mom uses, but he said that at that high a pressure, it would be painful. :( I asked him about the leaks, he said according to my sd card, the leaks apparently weren't too bad because it cut my events down so much. He said that most all masks leak a little, it's just a matter of finding one that doesn't leak as bad that is also comfortable.


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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
5/24/13 12:29 A

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Welcome to the team. I am glad the cpap has been a miracle for you too. Two stops a minute is a lot. 18 is really high pressure. Don't be afraid to try other types of masks. I have a full face mask for allergies and colds, but much prefer my nasal mask. A good nights sleep is like a miracle.



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TRACYDUKA's Photo TRACYDUKA Posts: 951
5/23/13 9:01 P

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I am newly diagnosed with sleep apnea. But I wasn't surprised with the diagnosis. My gramma had it, my Mom has it, my son even had it until they removed his adenoids (he's 4). I felt narcoleptic, I would drop asleep anytime I sat down, and I was told I snored something fierce. Though I'd sleep a solid 8 hours a night and felt like it was good sleep. I had my study done and found out I had 120 events per HOUR. 30 events was labeled severe. Good thing was, I never STOPPED breathing, I just FOUGHT to breathe. I have a smart machine. It was set on auto-adjust at first, then at the 6 week visit he set it to my usual spot (18), and I can hit a ramp button so it doesn't take my breath away at first. I have a full mask and honestly, I don't like it. It's constantly leaking somewhere, making a pooty noise and waking me up. However, I feel a sight better during the day for having used it. At my 6 week visit, my events went from 2/minute to 1 every other hour. WHOOHOO! I'll take it! Since having my cpap machine, I've lost 10lbs. Sleeping has been my ONLY change. (well that and having energy so I can do more.)

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
9/16/12 4:34 A

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Welcome to the team. I am so sorry I am late in responding. Just finally getting caught up with the spark mail. We have had a few inquiries about dental appliances over the years. It will be nice having you here with actual experience. I have mixed apnea. I also forget to breath sometimes, so I need the cpap.

I think I will start a new thread with your question about the dental appliance to see if we can get a little more attention to this topic. Thanks for the idea.



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TORTISE110's Photo TORTISE110 Posts: 4,117
9/11/12 5:57 A

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Hi. I just joined and was glad to find a group dealing with apnea. I used cpap for several months and got results, but am trying a dental appliance now. I hope it will be more portable. I have had to adjust it a few times--special dentist--and so far it seems to be working. Anyone else using a dental appliance?

In any case I love sleeping well and think it has contributed to my weight loss on Spark. Happy to be here and looking forward to getting to know this team!

Toni
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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
9/8/12 12:35 A

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Here is the poem, but this is the rough draft. I can't seem to find the finished version. I know I edited out the snake and added a different verse. Oh well. At least you will get an idea how to have fun with the cpap. The child I wrote it for went to the sleep study, but they decided to remove his tonsils and adenoids and see if that helped before putting him on a cpap. He did have a cousin who was encouraging him. I haven't heard back from his mother, so am assuming he did not have to go on the cpap.

*****

I went to the hospital and what did I see
A doctor with stethoscope looking at me.

A probe on my head, a probe on my wrist
A probe on my leg and a probe on my chest

I’m wired and taped and covered in goo.
How do they expect me to sleep with this too.

The room has a mirror and a very big bed
I’m suppose to lay down with this stuff on my head.

The lights are turned down and I can’t hear a sound
Hopefully, sleep will soon come around.

I toss and I turn and I kick at the sheet
While Mom sits beside me in her very own seat.

She smiles and sings a soft lullaby,
Next thing I know the night has gone by.

They say I’m not breathing during the night
The cpap machine will make that all right.

There’s a mask for my face and a hose for the air
A tank for some water and the machine if I dare.

I don’t want to try it. It scares me you see
My cousin says “silly, there’s lots you can be.

The little brave elephant shows lots of spunk
When the mask and the hose are used for a trunk.

He raises his hose nose and lets our a roar
But that isn’t all, there is so much more.

Slithering snake from the hose I can make
To glide in the water of the bathtub lake.

Aviator scarf and aviator mask
When flying my plane is not much to ask

Listen in one end and talk in the other
It’s fun to make noises at one another

Black robes and helmet and add a light saber
Talking through mask makes me sound like Darth Vader

But the fireman suit is the very best thing
Mom made it for me to sleep in and dream

The humming machine on my night stand sits.
Around the cpap the fire engine fits.

The blue lights are on . I’m ready to roll
The hose is draped carefully over a pole.

The mask fits snuggly on top of my face
I’m ready for dreamland and my fireman’s race.



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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
9/8/12 12:22 A

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www.resmed.com/us/assets/documents/p
ro
duct/s8_elite/user_guide/338116_s8-eR>lite_user-guide_amer_eng.pdf
Here is your product manual and I can't find anything about an AHI readout. When you go to the doctors, have your card read and ask them to show you if it is possible to check your AHI on the digital read out.

I have never tried the masks with the foam cushions. I believe Merri has one similar to yours. I bet you get a better seal and less kitty whiskers on your face. (lines and creases)

Hang in there. I highly recommend meditation to put yourself back to sleep. www.youtube.com/watch?v=NmA-dWdaI5k&
li
st=FLNXi5mwPsLeLJWlTHmAq4Ag&index=6&R>feature=plpp_video
Shut your eyes. It is the waves or harmonics in the music that is soothing. Just keep it turned down really low. Make the positive affirmation one of relaxation and restful sleep for another couple of hours.



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NOREGRET2010's Photo NOREGRET2010 SparkPoints: (46,124)
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9/7/12 7:25 A

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the link is VERY helpful, thank you! I see the one I use - Flex Fit 470 - would only be $57 through that site, wow!

made an appointment with my sleep doc - September 19th.

Machine is a Resmed Elite S8 (http://www.resmed.com/us/products/s8_elit
e/s8-elite.html?nc=patients). I have looked at it a bit, there is not a lot in the menu and I didn't see apnea events listed - just hours used, etc.

Last night, I again made it from around 10 pm to 3 am. Haven't been able to go back to sleep since. I have some longstanding insomnia issues on top of the apnea - I can get to sleep but then I wake up in the middle of the night for an hour or two. Interestingly, that had sort of stopped when I wasn't using the CPAP...I could get 5-6 hours "sleep" without waking. I say "sleep" because I was definitely having apnea events and snoring my head off.

I'm committed that this is a long-term project. Getting used to the CPAP and resolving my sleep issues (and sleep debt, because I am quite sure there is one) is going to take time. Thanks SO MUCH for your encouragement along the way!

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
9/7/12 3:09 A

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Sorry about the old mask. What type of mask and machine do you have?
www.cpap.com/productpage/comfortgel-
ma
sk-phillips-respironics.html
I like this website. It gives you an idea of what is available out there and how much it costs. The mask I clicked on is my mask. It has been my go to mask although I do want to try a cloth mask too. Notice the price. You might check with your provider to see if they offer discounts when you don't have insurance coverage.

Boy, I don't see my machine anywhere. I was going to try to describe how to read the readout. Let me know what your machine is. Then, I can do a little research. www.cpap.com/cpap-machines/cpap-mach
in
e.php




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NOREGRET2010's Photo NOREGRET2010 SparkPoints: (46,124)
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9/6/12 11:00 A

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Just called insurance. Must clear deductibe, 1500 before they will chip in 70% of the mask.

Am I frustrated? Yes.

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GOLDDUSTTWIN's Photo GOLDDUSTTWIN SparkPoints: (77,761)
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9/6/12 10:53 A

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I am confused...your mask is 6 years old? Mine get replaced every 6 months? How can they not replace it? Also if it should tear within the 6 months it is replaced at no charge...I would ask more questions and talk to your Doctor about it not working for you and how old it is! Good Luck and let us know how this works for you! emoticon

´¨¨)) -:¦:-
¸.•´ .•´¨¨))May you have Butterfly Mornings and Wildflower Afternoons!
((¸¸.•´ .•´ -:¦:-
-:¦:- ((¸¸.•´* Dusty



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NOREGRET2010's Photo NOREGRET2010 SparkPoints: (46,124)
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9/6/12 8:48 A

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Wow, GRAMMACATHY, thank you SO much for the information and concern!

The first night was good. Slept like a rock, didn't move. Six hours on the machine.

Last night, not so much. About 3.5 to 4 hours on the machine.

1) It took me a long time to go to sleep - at least 45 minutes. I had put on the CPAP at 10 pm, trying to begin a habit for good sleep hygiene. I could not settle down tho (probably due to the second issue below).
2) I realized the air was really COLD about midnight, in fact I think that woke me up. Apparently I'd forgotten to turn on the heater/humidifier. Fixed that, in a few minutes the air was warmer and I could go back to sleep. i don't recall turning it off, but may have done so when I finished using it in the morning.
3) Around 3 a.m, I ripped the mask off. I don't remember much but feeling irritated. Partner said I'd been moving around before that, tossing and turning a little.

Mask: Mask will likely need to be replaced and I know it. However, my insurance won't pay till I've reached my deductible, which I haven't (I know this from calling last time I was on a CPAP kick). However, I'm going to try to call again and see where I am. The hose/tube is in excellent shape, the mask appears okay, but it's 6 years old and I'm aware it probably is not in the best of shape simply due to age. I also realize thinking about it this a.m., I think I had the mask too tight as well.

Settings: I have no idea. :( They set it up for me to hit start and go. Never mentioned anything about adjusting etc. I went to one followup appointment where he looked at my results and lectured me on compliance and unfortunately, rather than taking it to heart, I allowed it to encourage me to be even MORE non-compliant. Sigh. I did look online at info on the machine, and I'm going to look more at the info that came with the machine as well to better understand how it works, etc.

I sort of had a plan I would use it consistently for two weeks and get an appointment so they could look at what's going on, see if it needs adjustment, etc. I know I need an appointment soon, I need the mask, etc. However, money is an issue (isn't it always?).

That said, it's my life and my sanity at stake here. Thinking the last couple days how I am always tired. Always. I have to have a nap almost every day, because I am exhausted.

My very first thought when I woke up this a.m., tired and groggy was "damn it I'm not doing that anymore, I hate that thing!"

But I'm over myself, LOL. When I thought about all the reasons I need it, I know I'm not giving up.

Thanks for your time and concern, and all the help. I appreciate it!

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GRAMMACATHY's Photo GRAMMACATHY Posts: 19,216
9/6/12 1:26 A

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Howdy Neighbor, I live in St. Helens, north of Portland. I have a brother in law in La Pine and a niece in Sisters. Small world.

Compliance was easy for me as I had immediate overnight results. Getting used to the machine took six months to a year.

Some things need to be adapted and changed, but think of it like wearing glasses, contact lens, high heeled shoes underwire undergarments etc. The benefits outweigh the discomfort as long as each of those things fits correctly.

So, it has been a few years. Do you have a good fit with your cpap? Do you have a memory card or a digital read out? Has your weight changed? Is your mask still viable?

If you have a digital read out and a memory card, check your readout nightly for a couple of weeks for your AHI score. After two weeks take the memory card into your tech or supplier. They generally read them for free. Make sure your AHI is in normal range. You can also get a read out on your compliance.

My AHI was 60 in an hour, now it is .8 I don't know how the machine calculates that. But I guess I had half an apnea event or maybe I had three events over an 8 hour period.

This link says normal AHI is under 5. That seems like a lot to me. Duration is important too.
www.entandallergy.com/nad/media/pdfs
/J
OHN_DOEpsg-PRINT.pdf



Lanky Lefty is my go to internet tech. He has some great info on getting good fits on masks and strategies for working though adjustment issues. If you are looking for something specific, just ask and I can find you a link to it. The sight is big.
freecpapadvice.com/

Let me know how last night went for you. How many hours were you able to keep the mask on? What were the issues that made it uncomfortable?

Best of luck with this. Sleep apnea almost killed me. I spent four days in the hospital. You do not want to do that.



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NOREGRET2010's Photo NOREGRET2010 SparkPoints: (46,124)
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9/5/12 12:21 P

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I'm Lisa, from Bend, Oregon.

yep....my sleep study was ...um....in oh, 2006? Maybe 2007? I got my diagnosis of sleep apnea and subsequently a CPAP....and then failed in complaince.

Failed in a big way. Hated the darn thing, it was a hassle, blah blah blah. Used it sparingly and sporadically.

And...every time I went to my family doc and complained, "i don't feel good! I'm tired all the time! I can't lose weight!!" he said, "how's your CPAP compliance?"

Needless to say, I didn't wanna hear it.

Mostly, I just took it with me when we were going places where we'd be sharing space with others so I didn't snore and drive everyone crazy.

Last night, I made up my mind....I'm going to be compliant. PERIOD. Dragged it out, wiped it all off, set it up and USED IT.

Joined this team so I could reinforce my compliance with associating with others who are being compliant!!

So, here I am. Ready to take my apnea seriously.

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