Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Reenee

Re: Especially for newly diagnosed - Dealing with Change

Post by Reenee » Fri Sep 21, 2012 8:49 pm

Thank you for this lovely entry. It was beautiful, and well said. What I would like to know is does anyone ever question this? Does anyone ever wonder why so many people on Craigs list are selling their Cpap machines? Does anyone else ever question who is making all the money out of scaring everyone to death stating that if they did not use this machine they were going to have a heart attack or stroke? I have been struggling with this mess since April. I loved the references to Elizabeth Kubler Ross in your posting, but and this diagnosis is similar to a death, I have read a lot of Ross in the past year and a half since the death of my only son. I was put on anti depressants which I think led to the pushing me over the apnea abyss. Before I was diagnosed I did not think anything would ever bother me again, but this mess has. My mother is 92, and probably has sleep apnea. She is just starting to lose her memory in the past 6 months. She does not have high blood pressure, no heart attacks, no strokes, no cancer, no diabetes, she drove a car till 6 months ago. We are not thin, but not too far over the lowest bmi indicating obesity. (it is pretty low now, have other people checked this?) I have extreme trouble sleeping, wake up about 3 - 5 times each night to use the bathroom, and each time I get back into bed to try to get back to sleep I need to put that stupid cold nasty reptile that blows on my like a rabid cat. It takes forever to get back to sleep, and in the beginning I cried. I thought the promise of cpap was supposed to decrease bathroom trips in the night, (mine has increased since only being able to sleep on my back) help you to lose weight (not hardly despite exercise and low calorie diet) and help with daytime sleepiness and headaches. The only improvement I have found is a reduction in headaches. My ahi is 85. yeah, I know high, severe. You would think that I would be so dang happy now. I am almost as angry as I was when I was diagnosed in April. I have seen a couple of surgeons who both said that my tonsils are not big enough to bother removing. I saw a specialist last Wed who said that the reason why I have such bad sleep apnea is because I had several teeth removed when I was young and my mouth is small I guess and my airways are also small. He also said that after menopause women's throat muscles slack. Do any other women get angry that whenever they refer to women with sleep apnea they depict young pretty women with no mask on peacefully sleeping on a white pillow case?? I also had no diabetes, no high blood pressure, no sign of heart attack or stroke. I actually was so depressed that I resent that they told me that I had this stupid thing and wish that they would have let nature take it 's course. I am also a believer, but if God is our reward for living by his laws, why does everyone want to extend it? The two biggest reasons I use the machine are to not snore, and the idea of having a stroke and surviving does not sound like a good thing. I am sorry this is so cranky. I just can't get enough sleep. I know I sound very depressed, and probably am, but does anyone know of any anti depressants that don't exacerbate sleep apnea?? Or that don't have any side effects? Peace. I am hoping to have someone find the ironies that I have. Maybe some day I will get used to it, but it feels like a life sentence, and that I am being punished. I really hate it.

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Re: Especially for newly diagnosed - Dealing with Change

Post by 2kittymom » Sat Sep 22, 2012 10:21 am

Welcome to the forum, Renee. This is a great support source, with many caring people. I'm sure you will get lots of replies. First I'd like to say that you have a lot of painful issues right now. Adding the diagnosis of sleep apnea to it hasn't made it better for you, and you have a lot of anger. I can't imagine the pain of losing your son, and my deepest sympathies are with you. Then, watching the deterioration of your mom on top of that, you have had more than your share of stress.

The reason there are so many CPAP machines for sale, is often due to many people refusing to use them. It is hard to admit that we have a life-changing diagnosis that results in our being tethered to a hose every night, very likely for the rest of our lives. Many people just give up on their therapy. And, many people do have strokes, heart attacks, and other health disasters, due to untreated sleep apnea. Apneas cause a reduction in oxygen to our vital organs, which then causes the breakdown of those organs.

CPAP therapy has only been in existence since 1981. It's invention has saved tons of lives, and added quality to those lives. I am so thankful that I was diagnosed and am being treated. Before the diagnosis, all I knew was that I woke up too many times during the night, and I could "sleep" for 10 hours and still be very tired. Once I woke up suddenly, feeling like I couldn't breathe. That was scary. During my sleep study, my oxygen level went down to 70%. Untreated, I could have had a lot of damage to my vital organs. Once I was diagnosed and realized how bad my apnea was, it wasn't an issue of whether or not I was going to comply with the therapy. I knew that any night without the machine was a night that I was not breathing during a lot of the night. I have used the machine every night since I got it, which is now 65 nights straight. As for the "rabid cat" description of the masks, I tried at least 10 or more before I found my favorite. I now sleep with the Sleepweaver Advanced, which is a cloth mask. It is so lightweight that I hardly know I have it on. I chose the leopard print one. ( Silly, perhaps, but I look at it as adding a bit of style!)

As to your remark about God, and why we want to prolong our meeting him, I will just say that we all have our "jobs" on this earth, and we are to meet him when it's our time to meet Him. And, if all things are from God, and we know that He guides the hands of the physicians, then the CPAP therapy is also from Him.

I know you are depressed, and that you have reasons to be. However, I hope that you will begin to see some blessings around you. A couple of times in my lowest times of my life, I've gone to support groups. They did wonders for me. To be in a group of people who truly have gone through the same issues is a great healer. There are groups for parents who've lost children, and also groups for people who have relatives having memory loss. I encourage you to look for one or more.

Then I encourage you to use positive self-talk. Our thoughts can manifest what we receive. If we tell ourselves that we are unhappy, we will be unhappy. The subconscious mind takes your thoughts as truths. If you find yourself thinking thoughts that are bringing you down, get rid of those thoughts. Think something else. Look for things you can be grateful for, however small or contrite; a beautiful flower, sunrise, sunset, your home, friends, etc. And, lastly, in the words of my dear departed sister; "have something to look forward to." It doesn't have to be something big.

I wish you blessing and comfort in your life and on your journey into CPAP land. Many of us here are so glad we are.

Lori

Reenee

Re: Especially for newly diagnosed - Dealing with Change

Post by Reenee » Mon Sep 24, 2012 8:29 am

Thank you Lori,
your response was very thoughtful and thorough. I will take all of your advice, including the positive thoughts. I do try all of these things, but was having a particularly bad day, have just past the 2nd birthday of my son after his passing.

You are right about so many things, and truthfully, I knew all of these things, I go to groups, individual therapy, try to look at positive things, it is just that grief takes so much work. It does not leave you 24/7. Every time I wake it is back

torturing me, and I feel sometimes that the cpap is a torture device. I know sounds kinda crazy, but this is what my mind does. I am taking lots of vitamins and get lots of exercise, go to church, help my mom, volunteer, work in my garden, swim, ride my bike, read, sew, work 30 hrs, cook, clean.

I just wish I did not have the added burden of this. I know that I am not special, I just feel like it is insult to injury. I will keep trying. You are kind to respond. Maybe some day I will find peace. Reenee

LisaSleep

Re: Especially for newly diagnosed - Dealing with Change

Post by LisaSleep » Mon Sep 24, 2012 7:33 pm

The post of that story from the person who has exoquently placed a medical diagnosis inn a category of loss, is absolutely metaphoric, analytic and very introspective.. I must say I am a Mental Health Counselor working with patients in the field of sleep disorders and specifically sleep apneaand this was absolutely beautiful and well stated... I wish all of you the best that life with a new perspective has to offer... The air that you breathe, the sleep that you need will absolutely have the most significan and positive impact on youdr life... You will get through this and you will be so glad that you did... The treatment of a cpap is life altering and will help your body, brain and soul to become haromonious.. Be well.... LisaSleep

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Re: Especially for newly diagnosed - Dealing with Change

Post by Denial Dave » Sat Sep 29, 2012 5:16 am

Finally made it through my first night without feeling the need to rip off the mask.

I feel rested , but my lungs & chest feel like they ran a marathon.

How can I feel rested & exhausted at the same time??

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Dai220

Re: Especially for newly diagnosed - Dealing with Change

Post by Dai220 » Sat Sep 29, 2012 7:45 am

Hi been on CPAP machine for three weeks my AHI drop but has risen again what should it be or what should I be looking to acheive Not happy with mask anyone on the hybrid

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Re: Especially for newly diagnosed - Dealing with Change

Post by Pugsy » Sat Sep 29, 2012 8:07 am

Dai220 wrote:Hi been on CPAP machine for three weeks my AHI drop but has risen again what should it be or what should I be looking to acheive Not happy with mask anyone on the hybrid
This thread really isn't the place to ask for help. Your problems will get lost because this was mostly a "read" thread.
For specific help it would be better if you started a new thread in the main part of the forum for your specific problem.
That way all the members will get a chance to see it and offer their thoughts. Many of them have already read this thread and don't come back here.

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Re: Especially for newly diagnosed - Dealing with Change

Post by Angelika64 » Fri Oct 19, 2012 2:09 am

i m all new to this.I knew I had troubles with sleeping for the last five years.It was the daily battle fighting with my tri west health i surance, to get three sleep apnea tests scheduled and approved for payment.Now, I have the maschine since this Tuesday.My battle now is getting used to the small noise level from the machine and the out flow of air from the nose piece. i m a very ligeht sleeper and its driving me nuts.Its 2 am midnight.I m sitting in my bed, with all the gear on.I cant sleep.HELP!I want to give it a good chance..

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RogerSC
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Re: Especially for newly diagnosed - Dealing with Change

Post by RogerSC » Sat Oct 27, 2012 2:11 am

Angelika64 wrote:i m all new to this.I knew I had troubles with sleeping for the last five years.It was the daily battle fighting with my tri west health i surance, to get three sleep apnea tests scheduled and approved for payment.Now, I have the maschine since this Tuesday.My battle now is getting used to the small noise level from the machine and the out flow of air from the nose piece. i m a very ligeht sleeper and its driving me nuts.Its 2 am midnight.I m sitting in my bed, with all the gear on.I cant sleep.HELP!I want to give it a good chance..
Hey Angelika, a couple of suggestions. First off, I'd put this in the general forum so more people see it, and can suggest things that you can try. Also *smile*, I'm also a very light sleeper, so I used Ambien the first week to get used to sleeping with the machine and that worked for me. After that, I went cold turkey, and getting to sleep wasn't very hard, I had gotten pretty much used to it. The other thing is that I sleep with earplugs, have been for several years before CPAP. As a result, all I hear is my own breathing, I don't hear the machine at all.

The key is to keep trying, and try various things. Don't give up, please. If nothing else, after while you'll have to sleep, your body will demand it, if for no other reason *smile*.
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Bazeman
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Re: Especially for newly diagnosed - Dealing with Change

Post by Bazeman » Sun Dec 23, 2012 8:51 pm

Thanks, I am a new cpap user going on my 5th night. Its definitely not easy.
Bazeman

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JChester
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Re: Especially for newly diagnosed - Dealing with Change

Post by JChester » Wed Dec 26, 2012 10:16 pm

Thank you for such a well-written, thoroughly thought out, beautiful & insightful primer into the world of apnea & CPAP. (I printed a copy for my wife!)

As a B.S. Psychology, I appreciate your research & attention to detail, as well as your amazingly sympathetic approach to your fellow humans!
Acknowledging the theological differences in your perception of the ordeal & that of the reader is KEY to its universal acceptance & is greatly appreciated.

My path was somewhat different...

I'd long suspected, from reports from my wife & others, that I was probably SDB. But... I was SO RELIEVED to hear that, after my sleep study, I was a severe apnea case & that it may have been a contributing/primary factor in my Atrial Fibrillation, which had, in turn, caused my Congestive Heart Failure! (I'd already had "all of the above" behavioral stages you describe, from my CHF diagnosis & having been admitted for 6 days & 18 liters of fluid removal!)

I was SO happy to get my CPAP (2 weeks ago) because I KNEW that my wife & I would both FINALLY get a decent night's sleep (ACCOMPLISHED!) ...and that it will, hopefully, have a positive effect on my A-Fib.

So far... so GOOD! (TIP: Although the S9 is VERY quiet, we always run a box-fan in our bedroom, just for background noise. Always have. Neither of us can sleep in total silence.)

Thanks again for affirming what I've been hoping for!

I look forward to being both a learning & contributing member on this forum.

Cheers!

JC

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Re: Especially for newly diagnosed - Dealing with Change

Post by RestedRebel » Thu Jan 03, 2013 5:22 pm

Hi. I'm a new member to this board, having been recently diagnosed with moderate sleep apnea. When I had a recent colonoscopy, the anesthetist told me I had sleep apnea and to talk to my doctor about having a sleep study. My family doctor was extremely supportive and told me that he also suspected he was suffering from sleep apnea and was going to have to undergo a sleep study himself. I told him that I was concerned because my nose is always stuffed up and I was afraid I wouldn't be able to breathe through my nose. He told me this was one of the symptoms of sleep apnea and that changes and improvements have been made over the years, and that sleep apnea is the most underdiagnosed disorder around.

Because I suffer from anxiety, I took an anxiety pill both nights of my sleep study, which probably helped a lot although I did have trouble sleeping while being hooked up to all those monitors. I brought home my machine on December 26 and took anxiety pills for the first week until I got used to the machine. I had a little trouble sleeping the first night but my head felt clear-headed in the morning. During the course of the week, I learned I can sleep on my side or stomach with my head turned to the side, as I have a nasal pillow which allows me quite a bit of freedom of movement. Since the first day, my nasal passages have been clear and I can breathe all night and all day (I used to mouth breathe.) My machine also has a humidifier, and my nose feels so good in the morning as opposed to before I was put on my CPAP machine. I've maintained a positive attitude and not having a dry, irritated nose in the morning, makes my machine something I look forward to using. Feeling more rested is another benefit. The third benefit is that I'm happy, and no longer depressed. You see, I had been tired all the time even though I slept long hours which means that the quality of my sleep had been bad. To see life in a happy and positive way as opposed to be being too tired to do anything or look forward to anything is a huge improvement.

The question I have for the community is how often others clean the hoses to their machines. I don't want to get any kind of infection, but is it really necessary to clean the tube each and every week?

It's a relief to know why I was depressed, to know that I can get off my anti-depressants, and to know that my blood pressure meds will be able to be reduced after being treated for my disorder. I've also been unable to lose weight and had gained some, so it's wonderful to know that the weight loss should occur as well. I could fall asleep just sitting in a chair and reading, so it's nice to know why that was happening and to know that I can do something about that.

I checked my AHI score after a week of using my machine, and the number reads 0.9. Can anyone tell me what this number means? Thanks. I look forward to participating and sharing my ideas and viewpoints with the community.

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Re: Especially for newly diagnosed - Dealing with Change

Post by HoseCrusher » Fri Jan 04, 2013 12:28 pm

Isn't it wonderful when a treatment works well...

It sounds like you are off to a good start. Now all you need to do is keep using your machine every night.

You should clean your equipment based upon your immune system.

Those with a strong immune system seldom (if ever) clean their hoses. Those with a weaker immune system find periodic cleaning helps eliminate one possible source of infection.

Those who have grandchildren that like to play fighter pilot and mask up using grandpa's mask, clean after every visit...

During your sleep study your body functions were monitored. These included air flow, pulse rate, blood oxygen levels, heart function, brain function, and body movement. The data from this monitoring provides the information needed to diagnose sleeping problems.

xPAP machines monitor air flow. They make an effort to provide feedback on disruptions in air flow and report that as an apnea hypopnea index (AHI). This gives us a number to keep track of. The closer to 0 it is, the better our sleep should have been. The problem is that it is only 1 indicator. The machine doesn't know what caused the interruption in air flow.

If the cat jumps on you in the middle of the night, this interruption of air flow has nothing to do with a sleep disorder...

In general, the AHI reported by the machine is useful. If you see it as being stable, things are good. If suddenly you see it increasing, it is time to take a look at what is going on and try to gather as much information as you can and with the help of your doctor figure out how to eliminate the problem.

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Re: Especially for newly diagnosed - Dealing with Change

Post by RestedRebel » Sun Jan 06, 2013 1:22 pm

I have continued to use my machine every night, and last night was the best night of sleep I have had in ages. Years. I woke up feeling fresh and energetic, and of course, as with the first night and each subsequent night, my nose and throat have been clear upon waking in the morning. Even on the telephone people can tell that my voice has cleared up. My AHI for last night was .6 and my overall AHI is 1, so I would say this machine is doing me a world of good. I clean my nose pillow mask every night before I go to bed and clean out the water reservoir. I'll have to change my filter on Thursday because it will have been two weeks since I first started using it.

I'm using a
F&P Icon™ Auto CPAP with Humidifier and ThermoSmart™ Tube, and it seems to be perfect for meeting my needs. I don't see any examples of my nose pillow mask on-line, but it is also a F & P with just a nasal mask and a band to hold it on and it seems to keep a tight seal.

I am totally pleased with my CPAP experience thus far, feel so much better, and look forward to feeling a lot better as I continue to use my machine.

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Re: Especially for newly diagnosed - Dealing with Change

Post by madmoe » Tue Jan 08, 2013 8:05 am

I guess I'm on the other end of this spectrum. I was diagnosed in September 2012, had an AHI of 61. My airflow is set to 18 currently. The Sleep Study people said 25 but my Respiratory person suggested 18 to start with and see where it goes. I have always been a side sleeper, but found when I use my mask on my side, I swallow so much air that the pain in my gut wakes me up. This means I sleep on my back, which is also taking getting used to. I have tried many different masks. I tried the nose mask and pillows, but found that I always felt like I was suffocating, could not get enough air.

I found that my jaw kept dropping open so far that it would go outside the mask, so I started using a chin strap to keep it more closed.

I've woken up during the night with my mask leaking bad enough to have to shut down the machine, adjust the mask, and restart. The second time that happens in the night I usually leave it off out of frustration.

I have yet to be able to sleep all night hooked up to this thing. I know I need it, but thus far have not been having a good experience....

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