Newbie with questions!

[Java]

Hello everyone,

I'm new here and have a couple questions. First let me say that I was diagnosed with mild OSA in 2008 with an AHI of 8. Due to severe sinus issues I cannot use a nasal mask, and the full face masks at the time gave me horrible claustrophobia and made me feel like I was suffocating. Because my sleep apnea was so mild. my doctor said I didn't need to use the CPAP. Fast forward to 2012 and now my AHI is 24 and my oxygen sat dropped to 53%. Now the CPAP seems to be a matter of life and death. Fortunately, I found the Quattro FX full face mask which doesn't give me claustrophobia because it doesn't' go up between my eyes and over my forehead. I have only been on CPAP for 4 days for my titration test, but I did keep the mask on and didn't seem to bothered by it.

So my first question is about the symptoms of OSA. Since 2003 I have been dizzy 24/7, weak, brain foggy fuzzy head, chronic fatigue, chronic pain (fibro?), and I have not slept more than 2-3 hours at a time. I wake up every 2-3 hours with a racing pounding heart and I have to pee. Seriously, in 9 years, the longest I have been able to sleep is 3 hours at a time. I do not wake up gasping for air or short of breath, that's why I never thought my problems could be sleep apnea. Do any of my symptoms sound like sleep apnea and if so, do they get better with CPAP?

My next question is can sleep apnea be cured? I am morbidly obese, but on a diet now. Has anyone ever been cured of OSA and been able to go off the CPAP? Does your body become dependent on CPAP?

I can't list my equipment yet, because I just did the test to get my machine. When I get it, I will let you all know what it is.
I am using the Quattro FX Full face mask (It's a size medium and I think I need a small). Does anyone know if the Quattro FX full face mask for her is any different than the Quattro FX full face mask besides the pink color?

Thanks for the help, I am so glad I found this forum!

[Goofproof]

Congrats for suriving despite poor and non-treatment since 2003, Sleep Apnea can be cured, just don't treat it correctly, you will die, and be cured of everything. Losing weight is a good thing but for most it won't stay off, or cure your sleep apnea, it may lower your needed treatment pressure. It's important to get a machine that has good software and records full useful data. You may have felt like you were suffocating because they had a ramp set on your machine of the treatment pressure was set too low. both those are the providers fault.

Dormally you don't wake up gasping for air, but heart racing and weakness are a sign, having to get up in the night also. Before XPAP I was up 2 to 3 times, now never, but the same may not apply to you as I had a quad before XPAP and now only have 40% heart function, so I don't run normal at anything anymore. Welcome to our group of crazies. Jim

[kteague]

Hello and welcome. Yeah, so much of what you describe does sound like signs and symptoms of sleep apnea. After your treatment is in place and you've adjusted and have some time to recuperate from the years of non treatment, you'll know if there are any residual symptoms to be further investigated. A lot in your future remains to be seen, including how much impact weight loss will have on your OSA. What you can know is that treating your OSA will halt the assault on your body and brain, and it is reasonable for you to expect your life to improve with treatment accompanied by your renewed healthy efforts.

[kteague]

Hello and welcome. Yeah, so much of what you describe does sound like signs and symptoms of sleep apnea. After your treatment is in place and you've adjusted and have some time to recuperate from the years of non treatment, you'll know if there are any residual symptoms to be further investigated. A lot in your future remains to be seen, including how much impact weight loss will have on your OSA. What you can know is that treating your OSA will halt the assault on your body and brain, and it is reasonable for you to expect your life to improve with treatment accompanied by your renewed healthy efforts.

[archangle]

GoofProof is overly pessimistic, but the odds of a cure, other than CPAP are bad.

Some people do get cured of apnea by losing weight, by having surgery, using dental devices, etc.

Unfortunately, the success rates are low and there are other problems.

Most people who decide to lose weight don't lose it or don't keep it off. Some people still have apnea after weight loss. Start your CPAP, then lose the weight and then hope you lose the apnea, but don't count on it. If you still have apnea, at least you'll be thinner and healthier.

Surgery has a low success rate. Surgeons also call it "success" if it doesn't cure your apnea, but makes it less severe. You may still need CPAP even if you have "successful" surgery. Or you may find you need it again in a few years. Some of the surgery has bad, lifelong problems, especially UPPP.

CPAP works for the vast majority of cases if you use it. Unfortunately, a fair number of people won't do the CPAP and suffer the consequences. Along with their loved ones.

I do hope they find a better therapy someday. Nothing they've found yet comes anywhere close.

[Pugsy]

Do any of my symptoms sound like sleep apnea and if so, do they get better with CPAP?

Yes...and for sure this one.

I wake up every 2-3 hours with a racing pounding heart and I have to pee.

Nocturia is a commonly seen problem with OSA and with proper treatment it usually will go away totally if that is the only reason for the nocturia (there can be other reasons unrelated to OSA).
In my case I was waking up about every hour to pee and had a full bladder each time.
With proper treatment now I never have to pee during the night and often even in the morning when I do get up the bathroom isn't the first stop I make in the morning.

An apnea event creates stress on the body and the heart and a stress hormone that I can't ever remember how to spell is produced. It goes to the kidneys and the hormone turns the kidneys on into over drive....and when kidneys work hard they produce urine. That's an over simplified explanation as to what happens.

For me my first indications of effective cpap therapy were the elimination of the the hourly pee breaks and the killer headaches that I woke up with each morning that were related to drops in oxygen levels from the apnea events. Those were pretty immediate cessations....the other stuff like general energy levels and stuff...much slower to show improvement.
Those 2 eliminations alone were worth it to me.

[retrodave15]

My next question is can sleep apnea be cured? I am morbidly obese, but on a diet now. Has anyone ever been cured of OSA and been able to go off the CPAP? Does your body become dependent on CPAP?

Welcome to the group - I am 6' tall and weigh about 200 pounds - I am overweight but only by about 20 pounds. I have OSA, so it is not always a weight issue, but an anatomy issue. I have very narrow sinuses due to years of allergy issues. Am I dependent on my CPAP - hell yes, because I now feel better than have in years, except for my neck issues.

My wife is in the process for gastric bypass. The doctor said that she "MAY" be able to get off her CPAP, but this would have to be confirmed by a new sleep study. Loosing weight is not a bad thing, it is the best thing that you can do for yourself, but it is not a guarantee that you will loose the CPAP.

[Sloop]

My next question is can sleep apnea be cured? I am morbidly obese, but on a diet now. Has anyone ever been cured of OSA and been able to go off the CPAP? Does your body become dependent on CPAP?

Absolutely

I did it after one year on CPAP (about 20 years ago) and during that time I exercised and dieted and lost 65 lbs. Went from severe OSA (over 200 apneas per night) down to normal (if I remember right -- zero apneas). Went off CPAP for about 5 years and I was fine. But after that, due to knee issues, I regained all the lost weight and ... WALA, back on CPAP.

I find that being 20 years older, the weight doesn't come off near as easily. I also have trouble doing a spartan diet again. I DO however still walk 3 miles a day.

I don't know your age, but my suggestion to you (since you ARE dieting) is to begin a serious walking program. Doesn't matter how little distance you can walk to begin with (I started with a 100 yards -- that is all I could manage, I was in such bad shape) -- the key thing is to:

1. Do it daily -- make it a top priority in your life
2. Increase the distance each day -- doesn't have to be much, but it is important to keep increasing. No matter where you begin, you will find that in 3 months you will have gotten your distance up to 3-4 miles per day. Also after 3 months, YOU WILL BE A WALKER. You will feel tons better. You will have dropped a number of pounds, you'll have more energy, you'll get the benefit (FOR HOURS AFTERWARD) of endorphins -- all of this will be a HUGE boost to keep it going. Your family will begin to think you are obsessed -- let them think it.

Then, after a year or so -- and IF you have lost considerable weight -- go get another sleep study done. I can almost guarantee you that if you haven't eliminated your OSA, you will have greatly reduced it. You see, the walking not only helps drop the pounds but it also is a GREAT benefit to your entire respiratory system -- it gets it in shape.

[Wonderbeastlett]

I was in the same situation. I have mild OSA with a total AHI of 6.4. The sleep center said I didn't need a cpap and I was negative because my numbers were so low. I knew that wasn't correct because of the way I felt and both sides of my family have severe OSA. After I talked to the doctor and told him my history he said he would have a second doctor look at my results. The second doctor called a third and then finally they all agreed I had OSA. Your symptoms sound just about right.

The thing to look at right now is getting better with treatment. You need to start your cpap and then after about a month start changing your exercise habits. You will not do any good if you're still too tired to work out so get started on treatment and then go for losing weight. The weight coming off will really make you feel better but will not cure OSA. It might help but if losing weight was a complete cure all of us wouldn't be here. There are tons of factors to consider like the severity of your OSA and the reason you have OSA (narrow throat, large tongue, small jaw etc.) Losing weight won't make your tongue smaller and not block your throat! So, just take it one step at a time and if losing the weight helps then that's great if it doesn't you will just feel a whole lot better.

[Sloop]

The weight coming off will really make you feel better but will not cure OSA. It might help but if losing weight was a complete cure all of us wouldn't be here. There are tons of factors to consider like the severity of your OSA and the reason you have OSA (narrow throat, large tongue, small jaw etc.) Losing weight won't make your tongue smaller and not block your throat! So, just take it one step at a time and if losing the weight helps then that's great if it doesn't you will just feel a whole lot better.

Sorry, but you are lumping everyone into one category. (I.e., a wee bit too absolute.) Therefore, I must disagree -- at least for some of us. Losing a LOT of weight, plus rigorous exercise CAN IN FACT "cure" this disease. But what is the definition of "cure" in this case? The cure means you must remain at your new low weight and keep exercising. If a person does that - can OSA return? Possibly, but I wouldn't necessarily say "probably". After all, the older we get, the more difficult it is to ward off any and everything.

[Java]

Wow what a great group of people! Thank you everyone for your answers, advice and support!

Unfortunately, the Sleep Clinic nurse called me, and they need me to re-do the CPAP titration test because I had more than 40% leaks. It didn't feel like it was leaking to me.. It never made that "leaking" sound. So I will go pick up another CPAP test machine and try again! I just so badly want my real machine to arrive so I can "bond" with it and start sleeping. In the meantime... (shhh..this is our secret) I've pulled my old REMstar Pro M Series with C-Flex out of the closet (from 2008) and use it every night. I know the settings are not right, but I think it's better than nothing and it keeps me getting used to the mask.

[Java Time]

Do any of my symptoms sound like sleep apnea and if so, do they get better with CPAP?

I am 11 months into CPAP. I was also frequently waking up to go to the bathroom, frequently enough that I went in and got tested for diabetes, which I didn't have. The CPAP dramatically reduced my waking during the night to use the restroom. Some nights now I don't wake up until morning.

Pre-CPAP I was bad enough that I did wake up feeling like I was suffocating a couple of times a week. I was to the point that I was actually afraid to go to sleep, so maybe I was a little worse off than you are, but I think your oxygen levels are worse than mine tested. I think I was at 85%.

For me I was at 70 events per hour pre-CPAP (70AHI), I rarely slept deeply. When I would "dream", it was like normal, rational waking thoughts, not really even daydreaming. I just don't think I was falling into a deep enough sleep most of the time. This led to many frustrating nights where I felt like I was "at work" all night long going over the events of my day whenever I "slept". This problem has virtually disappeared for me since I've been on CPAP.

As to the fatigue, I am better, but not cured.

I've talked to various doctors and they've mentioned there are a lot of "chicken and egg" issues associated with CPAP. For instance I have low testosterone, but it is not clear whether that happened first or the sleep apnea, but there is a high connection between these two items. Same relationship with several other conditions that may cause fatigue.

My ENT said many people have multiple issues. I had to go on CPAP, watch my allergies, had sinus surgery, and went on Omeprazole due to acid reflux. All of these things contributed to my personal sleep issues.

I have lost 10% of my body weight this past year and would encourage you to continue with your weight loss efforts.
-Did it change my CPAP? No.
-Do I feel better and less tired doing simple things like climbing stairs? Yes, I feel MUCH better!!! The walking as suggested above is also really helpful. Keep those lungs in good shape by staying active.

Welcome and good luck. It isn't always easy, but you will start feeling better over time.

[Roch369]

My sleep doctor finds in his practice that 2/3 of his barriatric patients dont need the cpap machine when they lose a drastic amount of weight. That is very encouraging to me. Will I be one of the 2/3? hope so... at least for now it is giving me hope to exericse and eat right.
Being post-menopausal now, it is hard to lose weight (not that it was ever easy!)