New, confused and not sure what way is up.

[FarmerJill]

Saw this website in this months Diabetic Living mag....I have had Sleep Apnea for well over a year now and FINALLY got a machine. I am a 50 yr old woman, an insulin dependent Diabetic and for the past year a very sick person. Won't bore you with the laundry list of specialists I have been to or the list of tests and procedures I have endured.....but after my dentist insisted that I get fitted for a mouth piece and do another sleep study I now have this "wonderful" machine. It's a ResMed with the Heated Humidifier and I use nose pillows (mask) instead of the mouth/nose mask. I have had it for one week and already have had some problems and been in touch with the Sleep Center to discuss. I used to sleep with oxygen at night since my pulse hung out in the 50's and dipped as low as 38 and they swore this machine was all I need now. For the past 3 days/nights I have extreme gas/bloating and pain in my upper stomach.....When I am sleeping my heart feels like it wants to leap out of my chest and after I reported this to the Sleep Center they told me it's natural and I'll get used to it.
According to the internist, I have extreme sleep depravation to the point my metabolism has shut down and my body thinks it's in starvation mode. I have gained close to 30 lbs in the past year. My joint/muscles hurt so much that I can barely move at times....I run low grade fevers alot....I have headaches daily...I have become depressed, I now have high blood pressure and my sugar levels are just crazy. The Pulmonolgist thinks I don't exercise and I over eat....I own a Wii Fit and I use it daily for 30 minutes. I am going to yet another specialist next week and at this point all I want to do is scream and cry. Does this sound like "normal" events in the life of someone who has Sleep Apnea? I have been trying to do research and it all is starting to jumble together.

Thanks, Jill

[tattooyu]

From untreated apnea, I can relate to the weight gain, depression, body aches and headaches for sure. I didn't have low-grade fevers, but I FELT like I did; temp was always under 99.0. I just hit my year anniversary today. At one week, I sounded a lot like you. At one month, I sounded somewhat like you. The real difference (for me) came at about month 3-5. Everyone is different. Your Mileage May Vary!

Keep at it. We're here to help you. It will take some time, there may be tears or pulling of the hair, but do yourself a favor and DON'T GIVE UP on it. You will be able to look back and thank yourself.

Have you had your blood tested for antibodies for any autoimmune disorders? Low-grade fevers are common with those (as are body aches and such). However, I'd be interested in knowing if CPAP will help with any of those symptoms as it did with me. I think my internal thermostat was all screwed up. Also, make sure to register (it's free) and list your equipment in your profile. To see how to do that, look at the link below.

https://www.cpaptalk.com/viewtopic.php?f=1&t=46821

[BleepingBeauty]

Hi, Jill, and welcome to the forum. There's a lot to learn about this therapy, and you can do that here.

Many of the problems you're experiencing are normal (for anyone who's sleep-deprived and/or just beginning xPAP therapy). But it will get better as you learn more and get used to this therapy.

The gas you're experiencing is called aerophagia, and it's been discussed here many times. You can use the search function above to read up on what others have done to alleviate that painful problem. I can't speak to issues re: diabetes, but many of your other symptoms are common in people with OSA (weight gain, achy joints, headaches, depression). Chances are that once you start getting effective therapy, you'll feel worlds better than you do right now.

We know how difficult this is in the beginning, but try to adopt a good attitude towards using the machine, keep telling yourself that this can give you back your life (literally), and keep using it. Ask as many questions as you need/want to here, and keep that goal of effective therapy in mind. It DOES get better, so hang in there.

It will help us to help you if you could fill in your Profile (User Control Panel, top left of the page), listing your specific equipment (the exact name of the machine, humidifier, mask, etc.) from the drop-down menus, and noting other important details (like your pressure setting or pressure range) in the Comments section. That information will be included in each post you make here, so others will know what you're dealing with and can better tailor their advice.

Welcome aboard, Jill. You're in the right place. Best of luck going forward.

[pb5927317]

Saw this website in this months Diabetic Living mag....I have had Sleep Apnea for well over a year now and FINALLY got a machine. I am a 50 yr old woman, an insulin dependent Diabetic and for the past year a very sick person. Won't bore you with the laundry list of specialists I have been to or the list of tests and procedures I have endured.....but after my dentist insisted that I get fitted for a mouth piece and do another sleep study I now have this "wonderful" machine. It's a ResMed with the Heated Humidifier and I use nose pillows (mask) instead of the mouth/nose mask. I have had it for one week and already have had some problems and been in touch with the Sleep Center to discuss. I used to sleep with oxygen at night since my pulse hung out in the 50's and dipped as low as 38 and they swore this machine was all I need now. For the past 3 days/nights I have extreme gas/bloating and pain in my upper stomach.....When I am sleeping my heart feels like it wants to leap out of my chest and after I reported this to the Sleep Center they told me it's natural and I'll get used to it.
According to the internist, I have extreme sleep depravation to the point my metabolism has shut down and my body thinks it's in starvation mode. I have gained close to 30 lbs in the past year. My joint/muscles hurt so much that I can barely move at times....I run low grade fevers alot....I have headaches daily...I have become depressed, I now have high blood pressure and my sugar levels are just crazy. The Pulmonolgist thinks I don't exercise and I over eat....I own a Wii Fit and I use it daily for 30 minutes. I am going to yet another specialist next week and at this point all I want to do is scream and cry. Does this sound like "normal" events in the life of someone who has Sleep Apnea? I have been trying to do research and it all is starting to jumble together.

Thanks, Jill

My weight has been very hard to control as well, I am hoping the CPAP helps resolve that issue. I have been on it for two weeks now. I also always used to check my temp cause I thought I had a fever. Now I feel cold all the time, the doc told me today your circadian rhythms take awhile to regulate....

[JohnBFisher]

... Saw this website in this months Diabetic Living mag....I have had Sleep Apnea for well over a year now and FINALLY got a machine. I am a 50 yr old woman, an insulin dependent Diabetic and for the past year a very sick person. Won't bore you with the laundry list of specialists I have been to or the list of tests and procedures I have endured ...

I wish I could tell you I did not understand, but I fear that I know all too well how you feel.

So, first, let me welcome you to the forum. Coming here is a good way to gain control of your situation.

Next, let me tackle the doctor who essentially says "It's your fault" (from your post "...The Pulmonolgist thinks I don't exercise and I over eat..."). You will find I do a lot of research. It helps me challenge doctors when they decide to blame the patient.

Studies show that sleep disordered breathing - in and of itself - leads to further weight gain. See the following URL:

http://171.66.122.149/cgi/reprint/165/5/677

In that summary, they concluded:

In summary, sleep-disordered breathing is prevalent in healthy, overweight and mildly obese men and is associated with increased risk for glucose intolerance and insulin resistance. Moreover, we found that the impairment in glucose homeostasis is related to the intermittent hypoxemia that is associated with sleep-disordered breathing. Impaired glucose tolerance and worsening insulin resistance can lead to further weight gain, exacerbating the severity of disordered breathing during sleep. Given that untreated sleep-disordered breathing can directly and indirectly impact cardiovascular disease risk, early identification of sleep-disordered breathing should be considered in mildly obese individuals, particularly in those who complain of sleep-related symptoms. Because as little as 10 to 15% weight loss can reduce or eliminate sleep-disordered breathing (60), low levels of weight reduction may curtail the cardiovascular risk associated with sleep-disordered breathing even in minimally overweight individuals.

So, poor sleep due to sleep apnea leads to further weight gain.

It is possible to loose weight. But it is VERY, VERY important to get the sleep apnea under control to be successful in the weight loss. As you sleep more, your metabolism will increase, your body will start to not try to conserve energy as much and you will find that a minimal amount of exercise is easier.

The aches and pains will decrease as you get better sleep. Much of that is due to poor deep sleep (the Slow Wave Sleep - aka SWS or Stage 3/4 of Non-REM sleep). Essentially this is a period when the body does a lot of repair work. There are numerous studies that show sleep deprivation increases our sensitivity to pain. That is one of the reasons sleep deprivation is used to torture.

Getting your blood sugar under control will also help you sleep better. And unfortunately, I can tell you from my own experience that with poor sleep my blood sugar control goes haywire. It's a pretty normal reaction to a high degree of stress.

But you have a LONG way to go. You reached a point where you were very sick. It will probably take several months before the clouds start to lift. Please be patient. Come here when you face problems.

The gas and bloating may be allieviated with either Exhalation Pressure Relief (if your machine has it). Or you might need to move toward a BiLevel Positive Airway Pressure machine (a BiPAP from Respironics or a VPAP from ResMed). You should discuss this with your sleep specialist. There are some tricks people here use to help combat that issue. Search for "Aerophagia":

search.php?keywords=aerophagia

Some of it is normal. And many people often feel uncomfortable with the deep breathing they can now do all night long. Some of it does just take time. But there are options. So, don't feel as if you are "stuck".

... I am going to yet another specialist next week and at this point all I want to do is scream and cry. Does this sound like "normal" events in the life of someone who has Sleep Apnea? ...

Not everyone reaches such a depth. But yes. Many of us do understand how you feel. We understand far too well. I was diagnosed with obstructive sleep apnea about 20 years ago. I have since developed a neurological problem that led to central sleep apnea. Over the years that grew worse. Unfortunately, I did not push to have it managed correctly. Untreated apnea (regardless of the type) led to Type 2 Diabetes, severe obesity, barely controlled hypertension, reduced kidney function, and ... Sigh! I do understand. You are not alone.

... I have been trying to do research and it all is starting to jumble together. ...

Yes. It does. Take it one day at a time. Set small goals. For the first week, just try to make your sleep as effective as possible. Then after that, start walking a little bit each day. During the third week, get a pedometer and just start to see how much you walk. Then during the fourth week, try to reach 1,000 steps per day. Or if you are already there, try to double it. You will eventially want to reach 10,000 steps per day.

But don't be in a hurry. Take your time. Go to the library and borrow some audio books (on CD). Or purchase some for an MP3 player. When you are walking take time to listen to the stories. Don't worry about walking. Don't worry about your health. You have our permission to just "get away" into the story.

Before you know it (in six months or a year) you will find you are loosing weight. You are feeling better. Your blood sugar will be under better control. That will help your pains and sleep. You will find you sleep better. That will help your pain and blood sugar.

The key is to go enjoy something else. Don't worry about where you are now. It can and will get better for you. It will take time. It took time to get where you are right now. But it will improve.

Hope that helps.

[sleeplessinaz]

Hi FarmerJill----Listen to John Fisher --he does know what he is talking about!! I can't tell you how bad being sleep deprived feels then that just compounds your health problems. He is right --we have all been there with you!! HANG IN THERE--it will get better---keep up the CPAP machine!!! It is the start of your journey into feeling normal again.

Welcome to the forum!!!

Carrie

[Muse-Inc]

Welcome aboard, fellow hosehead! Great info and folks here.

...used to sleep with oxygen at night since my pulse hung out in the 50's and dipped as low as 38 and they swore this machine was all I need now...

That seems rather optimistic of them. Those are pretty low numbers.

...When I am sleeping my heart feels like it wants to leap out of my chest and after I reported this to the Sleep Center they told me it's natural and I'll get used to it.
Not normal, it's the body's reaction to oxygen starvation...the brain panics & produces chemicals that make the heart race and blood pressure to skyrocket and breathing to accelerate to what feels like panting...scary as he$$ to wake up like that.

...According to the internist, I have extreme sleep depravation to the point my metabolism has shut down and my body thinks it's in starvation mode. I have gained close to 30 lbs in the past year...

Common in untreated apnea. I gained 50#s one yr, I date the start of my apnea to just before that yr.

...headaches daily

Common imbalance of CO2 and oxygen that occurs in untreated apnea. Might try deep breathing exercises when you get up to normal the blood gases.

...become depressed

Common in untreated apnea as are rapid mood swings and hyper-irritability. One member says she used to action like a bats-shi# crazy lunatic...I just say I was a first class bitc# to me and everyone else. Oh, and crying jags are common too, esp if your vitamin D levels are extremely low as so many of us have experienced.

...now have high blood pressure and my sugar levels are just crazy

My sleep doc on seeing my labs said untreated apnea makes a chemical stew of the blood with everything badly deranged from normal. My blood pressure had been low all my life; at diagnosis, it was 210/110...doc would have admitted me to the hospital from his office 'cept it had been 200/70 when I accidentally OD'd on thyroid med -- he put me on a diuretic and lisinopril then switched to Cozaar (angiotension receptor blocker, one of the best kinds of drugs for hypertension caused by oxygen starvation that we apneics experience every night until we get treated). Now, my BP averages 128-34/65-70 on just the lowest dose of diuretic. Blood sugar may stablize to normal after treatment; onthe other hand, it might now as studies show that untreated apnea for 5 yrs results in a diagnosis of diabetes in some huge percentage...bummer, time will tell what will happen to yours.

...own a Wii Fit and I use it daily for 30 minutes

WOW!!! I didn't have the energy to exercise until I had about 9 months of CPAP therapy; I was exhausted, then plain old tired for a very long time using my equipment before that improved. But, hey, I quit pee-ing 8-10 times a night on night 1 of CPAP therapy (body dumping liquid to reduce the skyhigh BP) so I had some immediate benefits of CPAP therapy.

... at this point all I want to do is scream and cry. Does this sound like "normal" events in the life of someone who has Sleep Apnea?
Yup, most assuredly, these are all common to untreated apena. I never had the air bloating, so I'll leave it to others who have experienced that and found resolutions.

Welcome again, we've done it & got the tee-shirt...ask questions or for help & someone will likely have experienced it and have answers/suggestions.

[FarmerJill]

THANK YOU.......THANK YOU......THANK YOU!!!!!
All of your advice has been wonderful!!!! I decided to get a bit forceful today and INSIST that the Doc and the Sleep Center help me today. I met with a tech who spent a very long time listening and helping. It seems that the Durable Med place had the CPAP set wrong. I have a vocal cord dysfunction and they did not read the script correctly. So tonight, I start once again. After reading all the replies left for me, it gave me the courage to insist on having it fixed today and not waiting until friday when the doc was in.
Hats off to you all for providing me with support and info!

I wouldn't say I have so much energy (it takes me an hour or longer to complete my 30 minutes of exercise daily) but I am looking forward to the day I "get back to normal"......It's not like I was this skinny little thing who was an exercise freak......but I was active and I miss that.

Jill.

[riveredge1]

Hey farmer Jill--i started end of nov and i was a lump of lard--beached whale-roadkill-what ever you call it but i hardly moved around--my butt fits my puter chair perfectly--i have always been a large lady but a very active one and i look back about 5 years ago when a winter went by and i could not remember it--seems i didnt leave the bed--forced myself to try and do the things i use to love and got so i hated them and that was beginning of depression-not caring what i ate-and then influenza B-that kicked my butt----------and also woke me up to something bad going on---short story is i am on the mend and thanks to this board- going to be a new person again at 61----my sleep study place doesnt follow up so this board has become my doctor and a mighty fine one-there is a light at tunnels end--my 02 dropped to 60% and i about ripped screen off window to breath--now i am suckin air like a vacuum and i am active and dont even realize it--it will come------

[Fred D]

Good for you. It is a wonderful thing to feel you have support and know you have people who can relate to the way you feel.
That is what this place is all about. Knowledge and support.... So don't ever feel alone; we are here.

Fred