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URSYL153's Photo URSYL153 Posts: 295
6/18/09 4:11 P

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I'm still doing as well as I can with the Hybrid. I like being able to breathe through my mouth or nose, as the congestion allows.

I was even able to keep it on while falling asleep crying (dear friends had to move away.) last night. Never could've done that with the old nasal pillows or nasal mask.

"What will you do once you know?" ~Inuit wisdom


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5/20/09 8:51 A

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I was using the mask and went to the nose pillows I like them . I stop using it becaue I keep on moving and during the night knock them out.. last night I sleep 8 hours and not a problem

DEE Southern New Jersey

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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (0)
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5/20/09 12:29 A

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Yesterday, I was thinking about getting the Respronics gel mask. I called my provider today, asking him if he could get it. He advised that everyone that he had sold, had brought them back because people complained about the gel being so thin, it wrinkled. He suggested others that I will consider. I will let you know when I choose. My mask leaked last night. I cleaned it but I guess the insert needs replacement. I am due a new mask June 15. How are the rest of you doing? Keep us all posted.

Edited by: BRAVEONE92 at: 5/20/2009 (22:16)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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5/18/09 1:03 A

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Mine only see setting to breathe

DEE Southern New Jersey

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God is Good all the time. All the time GOD is good.

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
5/17/09 11:51 P

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Me too Dee, and I have had the cpap for several years. There is always new technology and new solutions to old problems.

I have a respironics cpap too, It is only a year old, and it eases off the pressure when I exhale, but it does not measure apnea events and automatically adjust pressure like the newer machines. I two have had two sinus surgeries. One more month and I should be past allergy season. I like the saline solutions and use Astelin as needed.

Cathy
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5/17/09 11:18 P

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thanks guys I am always learning something new here

DEE Southern New Jersey

SP Class of Oct 12-18 2008.
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (0)
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5/17/09 7:52 P

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REMstar Plus by Respronics. I have C-flex, can see the setting, how many hours sleep nightly, & monthly. Otherwise I don't get a report. This is the only machine I have owned. What kind do you own? I used to use nasal pillows. I loved those. I used a chin strap to keep my mouth closed but it was stretchy and I would breathe through my mouth anyway. So after more than a year later, I went to a full mask. I have allergies & sinus (had two nose surgeries) but still have a stuffy nose at times. I use lots of saline spray, that helps and sinus rinse.
I definitely want to change my mask, I don't like the one I have. I looked at one on line that looks good. It is Respironics Comfortgel. (full face)

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
5/17/09 12:40 A

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Barb, What kind of machine did they give you? I wish I had gotten one of those automatic adjusting ones. I know that depending on the state of my sinuses I need more or less air. Does you machine have a read out?

Cathy
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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (0)
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5/16/09 10:23 P

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GRAMMACATHY

I am planning on calling my doctor Monday to schedule another sleep study. I waited awhile to see if I might stop breathing again while sleeping with the CPAP. I haven't so far. But I wasn't sure if it was that incident or the toxicity of vitamin D. I quit taking the vitamin. But I seem to feel strong one day and weak the next. I was weak this entire day. Hopefully, I will find out which one is causing me to feel so bad.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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5/15/09 11:27 P

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ok will keep you in my prayers Braveone.. Hugs hope you have a good weekend

DEE Southern New Jersey

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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
5/15/09 11:20 P

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Barb,
You did let your sleep doctor know about the incident I hope. The first time it happened to me I spent four days in the hospital and they diagnosed me with sleep apnea then. It took two months to recover. The second time with Buddy, I recovered fairly quickly and they cranked my machine up. Stay vigilent. After all it is our health and frankly I want to live to 90. I am glad you have an appointment on the 27th. Be sure to keep us posted.

Cathy
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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (0)
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5/15/09 10:51 P

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Thank you Dee for your concern. I am doing well now but I sure was sick and weak for about 6-7 days. I am not sure that my CPAP was the reason, it could have been something else. I have a lot of tests scheduled at the hospital on May 27. Maybe I will find something out then. I will try to remember to let you know.

Edited by: BRAVEONE92 at: 5/15/2009 (22:52)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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5/12/09 10:56 P

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BraveOne Please keep me posted about your health and will be praying for you. I am new to the cpap machine and yes I am going crazy, only got mine after I had emergency surgrey open ..

DEE Southern New Jersey

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Losing Weight & Disabled
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Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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5/12/09 9:17 P

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GRAMMACATHY I think I had an episode similar to yours when Buddy got on your chest. I have a pressure setting of 12. It previously was on 8. I was staying sleepy & had gained weight, so the doctor sent me for another sleep study. Even though I slept with the CPAP, my oxygen went down consistently all night, in the 70's. They put pressure up to 12. Since then I have lost 10 pounds and I don't have a lot more to lose. But about 10 mornings ago I woke up and wasn't breathing. I quickly took off the mask to get my breath. For two days I was real dizzy & weak. I am doing well now.

Edited by: BRAVEONE92 at: 5/14/2009 (21:23)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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4/8/09 10:42 P

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thank you will try that

DEE Southern New Jersey

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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
4/8/09 10:40 P

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With back pain I find myself flipping like a turkey on a rotisserie. The sleep clinic tech set my machine for the apneas on my back. I never get completely on my stomache, but if I line several pillows up my side,I can make a pocket with a couple of pillows, so I can sleep with my face pointing more face down. Keep experimenting, it gets easier with time.

Cathy
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4/8/09 9:34 A

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my problem is I love to sleep on my belly, never the back and can on the sides. now with the machine and hose I cant go back on my belly. UGH thanks for the info

DEE Southern New Jersey

SP Class of Oct 12-18 2008.
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Grandpas & Grandmas Are Special

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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DTILLER1147's Photo DTILLER1147 SparkPoints: (0)
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4/8/09 8:14 A

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When you sleep on your back usually is when you will have your more Apneas events. That is why when you do the sleep lab they try to get you sleep some on your back when they think they have your pressure correct. It is like worse case position. If you are using your CPAP and is set right you should be able to sleep in any position. This is good advice for the untreated or yet to be diagnosed.

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MAMMABEAR-THIRY's Photo MAMMABEAR-THIRY Posts: 9,615
4/8/09 3:23 A

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I was reading these posts and read that several of you are back sleepers. I recently received a mailing from our local hospital that had an article in it about sleep apnea. I was surprised to read that people with sleep apnea shouldn't sleep on their backs. They suggest that you are a back sleeper you should attach a pocket to the back of your pj top and place a tennis ball in it to keep yuou from sleeping on your back.

This isn't a problem for me as I never have been able to sleep on my back but my husband is. He also has sleep apnea.

Thiry



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4/5/09 9:50 P

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thanks for the info

DEE Southern New Jersey

SP Class of Oct 12-18 2008.
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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SHARRONRNC's Photo SHARRONRNC Posts: 164
3/29/09 6:58 P

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Thank you, Cathy ! Sharron emoticon

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
3/29/09 5:47 P

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I wear Respironics comfort gel nasal mask in a petite. You can mold the comfort gel part using boiling water. The silicone outer cover provides an extra seal, so you don't have to velcro the mask down so tightly.

Also, I have been seeing some advertising for a fabric mask. That might be interesting to try.

Cathy
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SHARRONRNC's Photo SHARRONRNC Posts: 164
3/29/09 1:04 P

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Help ! How do you find a comfortable mask? I was on C-Pap and now I'm on Bi-Pap, which I love, but all the masks I try hurt my nose. I am told I have a very small nose. They have me wearing a petite size. Any recommendation would be appreciated ! Thanks, Sharron emoticon

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
1/10/09 7:37 P

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Hi Willo, There is research to support what you have said about the TV. I am a special ed teacher and am always coaching parents to shut the TV off at least an hour before they put their children to bed.

I like to read before bed too. Lately, I go up about 7:30 and read till 9:30. This is very much a luxury for me and I feel totally pampered.

Cathy
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WILLO1990 Posts: 3
1/10/09 6:49 A

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When I first started taking the Ambien I figured I would always have to take something to help me sleep. At that point I didn't care if that was the only way I was going to be able to sleep. But I just kept doing research when I had the time and found other way to help, and found a fairly simple one [who would have thought] that helps, I read a book or magazine instead of watching tv,which I have
done for years when going to bed. I go to sleep every night now on my own not as early of course but that's ok with me since I don't have to take anything. Thanks to this forum I found I'm not alone, for a few months I just had a pity party for myself. Even after reading a few posts I thought I would never post a message because everyone seem to have it all together and I felt like I needed therapy
[mental] Thanks to you all I know that I am not the only one who has and is struggling with this and that I just had to stay positive and keep on trying.


Edited by: WILLO1990 at: 1/10/2009 (06:50)
GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
1/6/09 9:51 P

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Ursyl is so right. The humor really helps. I had a friend I worked with that would leave her mask on and detach the hose at the cpap. She said she would prance around the house swinging the hose and humming the strip tease song. Her husband thought it was hilarious. So did we when she retold the story.

Cathy
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URSYL153's Photo URSYL153 Posts: 295
1/6/09 6:45 P

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That is difficult Willo. Has being off the Ambien made any difference?

I find when I have to skip more than one night, due to illness, it takes me a couple or so nights to work back up to getting in 5 hours with the mask on. My body de-acclimates That fast.

It's good that you're seeing the doc soon. Write down the questions you want to discuss and don't let him/her blow off any until you understand exactly what's what.

I don't know what to suggest on the mask front. I've had good success with both nasal pillows (with bandana chin strap to keep my mouth and lips closed) and the Hybrid.

You do have a humidifier, correct? That cuts down the drying effect of breathing into a headwind all night.

I was surprised when my doc's PA told me that 4-5 hours/night is considered to be compliant. I was concerned because there's no way with my habits and schedule to get 8 hours straight.

I struggle with aerophagia too, less now than at the start, and it can be less than fun. Good joke fodder if you're so inclined. Might as well get some chuckles out of the situation....

"What will you do once you know?" ~Inuit wisdom


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
1/6/09 12:36 A

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Willo,
I am glad you have the Dr. Appt. I kept taking my mask off for about six months and would slap it back on each time I woke up. I used a chin strap for awhile. It helped a little, because it would wake me when I tried to take the mask off.

Cathy
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DTILLER1147's Photo DTILLER1147 SparkPoints: (0)
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1/5/09 8:26 A

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Wow, these are some great personal stories. The Good the Bad and the Ugly. Willo, I do not know what to offer you other than discussing with your medical team. I hope there may be someone else on our team that can suggest something. I think if you could keep it on longer you would be reaping better benefits but I am sure you know that.

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WILLO1990 Posts: 3
1/4/09 9:25 P

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I wish I could say the same thing,everyone told me I would feel like a new person after getting on the bipap. My sleep specialist even told me the first couple of visits that I was in complaince leaving it
on at least 4-5 hours if not all night, that was really good for as high as my pressure was[25]. I have been on it for about 6 months or so and I am getting worse at keeping my mask on. In my defense I do not even know I am taking it off in the middle of the night. I record the number on my machine before going to sleep and then check it the next morning to see how long I have kept my mask on, its only staying on about 3 hours or less, I was taking Ambein and thought maybe that was why I wasn't realizing I was taking it off. I have actually been able to get off that and get to sleep Most of the time being able to stay asleep but mask is still coming off and I don't even know it until I wake up the next morning. Even though I did not feel like a new person when I was able to keep it on most of the night I do notice when I can't I am back to being exhausted, taking naps after work and not being able to function as MOM when I get home. I see my doctor [sleep specialist] this month but I don't know what can be done to keep me from taking the mask off when I don't even know I'm doing this. Has this happen to anyone else?

GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
1/3/09 10:48 P

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Hi Angie,
The same thing happened to me. I spent four days in the hospital getting a battery of tests including the angiogram(a very painful experience)to find out that I had clear arteries and the heart of a teenager. Thank goodness one of the doctors decided to check out apnea.

The CPAP gave me a new lease on life.

The longer you are on the machine the easier it gets to wear. You will wake less fidgeting with the hose and mask. With luck you will continue to see more and more benefits.

Cathy
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NEWMENEWLIFE07's Photo NEWMENEWLIFE07 Posts: 358
1/3/09 5:52 A

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Hi everyone. My name is Angie. I was just diagnosed with sleep apnea this fall. I had my first sleep study on October 17th. When they called to inform me that I would need a 2nd study, they said I stopped breating 11 times an hour for at least 10 seconds each time. My oxygen level dropped to 79%. My 2nd study was on halloween night where they had me sleep with a CPAP on so they could adjust the pressure until they got my oxygen up over 90% where it's supposed to be.

I woke up one day in April )shortly after my 35th b-day)thinking I was having a heart attack. My heart's perfectly fine. They were actually surprised at how "clear" my arteries and stuff are because of my weight. The heart specialist is actually the one that recommended the sleep study.

Anyway, I've had my CPAP since November 4th. I can't tell a huge difference yet when I use it, BUT, I can really tell when I don't use it. Before CPAP, I'd be so exausted after work that I literally couldn't function. I would come home from work and literally "nap" for up to three hours and not feel any relief, and then still go to sleep at my normal time. Now, I don't require that afternoon nap. Until recently, I hadn't woken up feeling "rested" since before high school, which was over 20 years ago.

I'm just thankful to finally have a diagnosis, and to know that there is help out there for me.

Angie

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DTILLER1147's Photo DTILLER1147 SparkPoints: (0)
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12/26/08 2:29 P

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I agree with Cathy, it may be time for a second opinion. I have heard of the surgery but usually they want you to be seen be a Dentist first to see if an orthodontic device may pull the jaw forward. I am not sure how comfortable that is. I will say your pressure is high and if that is not minimizing the apneas then you made need to do more drastic things.

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
12/22/08 11:45 P

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I think I would do some checking with other doctors. Preferably ENT's. I haven't heard of this surgery. I have heard of having the pallate tightened and window surgery to open the sinuses. Having your jaw broke seems terribly invasive.

It took me 6 months to finally accept the nuisance of the mask and hose. I also went through about five masks before finding one that sealed without leaving huge dents and lines.

I can't imaging the wind storm that your pressure must be creating. I am stuggling with aerophagia some days and I am only at 13. I find that if I eat correctly and exercise 30 minutes daily I have less sleep problems. I toss and turn less and keep my mouth shut so I don't have leaks, dry mouth and air in my belly.

If the doctor breaks your jaw, he would have to wire your mouth shut too wouldn't he? That would mean several weeks before you could eat, talk normally, work.... As I said, it just seems so invasive.

Cathy
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WILLO1990 Posts: 3
12/22/08 8:20 P

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I'm fairly new to all of this. I have been using my bipap for about 6 months, I have been told I have very severe sleep apnea. My pressure is @ 25. My doctor is wanting me to consider seeing a surgeon to
have my lower jaw broke and moved forward to open my
air way more. This really really scares me to think about having this done. I hate going to bed at night because I have to put the mask on, I have tried so many and cannot find one that will fit properly. I was told that most will leak some since my pressure is so high. I know most of you have said not to give up keep trying a mask til you find one that fits, but I am so tired of trying mask after mask and nothing is working. Has anyone have ANY suggestions or has anyone had or heard of anyone having this kind of surgery?? Thanks for any advice emoticon

GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
12/22/08 3:17 P

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For me....the CPAP is a life saver literally. I can't encourage people enough to stay vigilant with their sleep health. Keep trying to improve sleep habits through good eathing, good exercise, routine bedtimes and medical intervention.

Anyone use the Breathe Right strips? My husband loves them. I find they can be helpful on days my sinuses are plugged, but so is Astelin and saline spray.

Cathy
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SMALLERMELORIE's Photo SMALLERMELORIE SparkPoints: (371,187)
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12/22/08 10:57 A

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Thanks for the link. Information is always appreciated.

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12/22/08 8:43 A

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URSYL153, I do not think we all feel like CPAP use "fixes" us. The magnitude of differences between use Vs non-use is vast for me. However, I too have some days where I wake up tired or have some drowsiness. However, if it becomes consistent then you need to get back to your doctor. Sometimes, it is just equipment leakage but sometimes you may need to go back to the Lab. I Just did that a few months ago. I need LESS pressure yea for meeee... I have lost a lot of weight. I started out on 18 psi now they set me at 8 psi. Thank you SP!

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URSYL153's Photo URSYL153 Posts: 295
12/20/08 4:26 P

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I learned decades ago, long before SA was in my awareness, to not sleep on my back.

When I woke up from nightmares, I would be invariably on my back--no doubt not breathing properly or enough.

"What will you do once you know?" ~Inuit wisdom


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URSYL153's Photo URSYL153 Posts: 295
12/20/08 4:25 P

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Not to burst anyone's bubble, but even with regular nightly use for a good few hours, not everyone gets the wonderful results of being fully awake like the rest of the world from their CPAP, or in my case BiPAP therapy.

It's been 5 years now, and while I'm better off than I was, I still have daytime sleepiness. Even on days when I've gotten 7 hours on the machine, I will still feel the sleepiness.

For me, and whatever percentage of patients, that's just the way it is.
I will continue with the treatment of course, because it's made a small difference, and I want to see my grandchildren someday, but it's sure not the alertness and weightloss wonderland "as advertised" for me.

I may well end up on something like Provigil, which I am not happy about being on yet another med. Hope the insurance covers it.

"What will you do once you know?" ~Inuit wisdom


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
12/13/08 9:05 P

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Hi Terri,
For years I could not sleep on my back because it hurt so much. Now I can comfortably sleep on my back. I hope the cpap does as much for you as it has for me. Nothing like a good nights sleep to relax the muscle spasms.

Cathy
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TERRIPRL's Photo TERRIPRL Posts: 26
12/13/08 7:46 P

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I am seeing my doctor on Tuesday to get the results of my 2nd sleep study and to find out about getting my cpap. I get so excited when I read about others with SA who are being helped by their cpap! I too have back pain and memory problems and can't wait to see if it helps. emoticon

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
12/12/08 11:26 P

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I am a very visual person and I love the image of a big black Lab giving CPR.

I blame the forgetfulness on being over 50. I will have to try the SA excuse.

I think better and am more organized when I am getting adequate sleep. I have less back pain and feel more like exercising. I love the cpap.

As a child I lived in a papermill town that caused the sinuses to swell shut. The stink peeled paint off the cars. My dad was a two pack a day smoker and I was his permanent sidekick. I can also remember being sprayed with DDT by the airplanes doing their ariel spraying.

All those environmental insults added up to having the tonsils and adenoids removed and two sinus surgeries by age 24. Then I messed up what remained of my metabolism with a severe bout of pneumonia and started gaining about 20 pounds a year till here I am. I think these things contributed to the obstructive apnea.

The reason the doctor thinks I also have central apnea is because I forget to breathe when I am awake. However, I have noticed the stoppages decreased significantly since I got Buddy. I think that is because he makes me walk daily. I have not lost much weight in the last year, but I am much stronger and more active than I was a year ago.



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12/12/08 2:33 P

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Wow Cathy, that was a neat story, however if my dog thumped me in the chest it would be like CPR!! emoticon He is a big black Lab.

However, that is also a scary story too. I think you are the first person I have meet that had the central Apnea.

Is there anything else that you feel that may be different because of your DX?

I know several people do find out about SA by first thinking they have had a heart attack. The low o2 that we suffer can do a lot of damage to body and brain!
I always tell my wife that is the reason I forget everything!!

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
12/11/08 12:01 A

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This spring Buddy (my fur hero) woke me by jumping on my chest. He looked concerned, and I woke gasping for air. It was only a three or four day recovery at home this time, and the doctor cranked my machine up another three notches.

The first time I quit breathing for an extended time I ended up in the hospital for four days. They thought I had a heart attack, but then discovered I had just quit breathing. The heart was in excellent shape even though the apnea event had put a huge strain on it. The doctor said I probably had central sleep apnea in addition to the obstructive apnea. After getting the cpap I know that I had sleep apnea even as a skinny kid. The cpap is such a blessing.

Cathy
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DTILLER1147's Photo DTILLER1147 SparkPoints: (0)
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12/10/08 7:45 A

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Welcome back I am glad you posted! You peek my interest; how did your dog help out? Can you tell us that story??

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,958
12/9/08 10:19 P

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It has been awhile since I posted here. I agree the CPAP saved my life too. So did my dog last time my pressure needed turning up.

Cathy
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12/9/08 1:23 P

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Results may vary, but I feel my CPAP saved my life! I don't think I am over stating. If you get DX with SA then a CPAP will fix you right up, if you will us it. Some have immediate results and others it may take a week to get use to it and let your body recovery from sleep deprivation. Good Luck post regularly on your progress.

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TERRIPRL's Photo TERRIPRL Posts: 26
12/9/08 12:08 P

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Thanks, I look forward to checking this out. I get to see my doctor in one week for the results of my second sleep study. I an really hoping that getting a cpap machine will help me. I am so tired all the time. emoticon

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DTILLER1147's Photo DTILLER1147 SparkPoints: (0)
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12/9/08 9:23 A

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Hello, I how you all search out other resources to learn about SA. If you have some very technical questions about your equipment, I would encourage you to check out this link. Their are some really good advice on these boards too. Check out this link!

http://www.sleepapnea.org/index.html



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