please help I am so desperate

This is klong but if you read it and advise you will be helping a woman told she has a heart of gold and nice by hundreds who helped so many in her life and who rarely receives help and really, badly needs it now. I feel at the end of my rope and I beg for your help. I have noone to advise me.

I have been diagnosed with sleep apnea at least 15 years, but believe I had it many years before that. I have struggled with severe clinical depression well over 20 years and for 15 years was suicidal every day. Although I feel most of that was from the 14 antidepressants I was on as all suicidal ideation stopped as soon as it got out of my system when I stopped all medical drugs several years ago. My depression continues though.

I have many symptoms of untreated sleep apnea although I faithfully where my c-papa. Once they lowered the pressure from 16 to 4 as I have delayed sleep phase syndrome (I also was told I kick my legs and probably also have that)..when I did not sleep hardly at all at the sleep study as they did at night when I am wide awake (I usually sleep sometime between 8 am and noon which is giving me little sunlight and ruining my life..unable to fix over 30 years though I tried many times, \

Anyway, I barely slept during that last ago sleep study and they lowered the pressure drastically. I kept insisting it wasn't right and finally after three years of trying convinced do to give me a daytime sleep study where they told me for 3 years I was getting essentially no rem sleep and very little stage 3 and 4 restorative sleep. They raised the pressure to 16 (machine only went to 15), but I still think it is to low as I was told I snore with it on and I am totally exhausted at all times..and never feel refreshed when I awake. I still have all the symptoms of untreated sleep apnea except morning headaches which I only have if I am stranded somewhere without the machine so it is fixing that apparently.

My machine just broke and I got a new one (I had not been to sleep doctor in 5 years). This machine said every time "high leak"..I kept pulling it tighter and tighter but the message still came. The machine also was shutting off continually (defective but the message came on even when awake) making me wonder for the first time in the mask was leaking in my sleep and blunting the treatment effect. The technician said the machine will compensate if there are leaks but someone at the sleep study I just did said this is untrue.

I got a new machine and it did not give messages (technician said this way I wont worry as I called him kind of hysterical thinking for over 15 years the darn thing is leaking and I didn't realize it and thinking how I almost killed myself and suffered so much from all the symptoms. I decided to turn pressure up gradually as I was so desperate to feel better.

I went to 20 the highest it goes, but notice no difference still exhausted, etc. I now think I am a mouth breather as I notice if I am drifting off, mouth goes slack and air leaks out through lips. Chin strap makes no difference..I even tried taping my jaw with duct tape but even if jaw tight, mouth air puffs out the sides.

I have had severe memory decline just severe and although I was a 3.9 summa c-um laud graduate about 15 years ago , I now have difficulty learning. I am highly emotional and my mom keeps criticizing me saying what's wrong with me --noone cries that much and is so emotional. (I have had 15 years without one day without a problem and suffered many more problems and serious ones than normal and that is influencing me too. I am at my rope's end.

I also just found out there is a correlation with sleep apnea and ADD which I feel I have. I suffer great anxiety and panic attacks, rage and irritability, moderately high blood pressure, leg cramps, excessive worry, beginning diabetes and told I have metabolic disorder which I just read is correlated with sleep apnea too, I don't want to get diabetes and end up on dialysis as my mom is dying and went way downhill since started and has been through he... I am very obese. I believe all these things are due to getting no sleep in 25 years the more I learn about sleep apnea..

I think the pressure is not high enough and I am mouth breathing. I did a sleep study last week and go to the doctor to get results this week, I was told by a man in the hall (but not doing the sleep study, the mask was leaking and I was adjusting it in my sleep, because he could hear it (from the room doing the testing) but I think he didn't see it and assumed it was the mask leaking but it was really the air escaping from my mouth,

The technician told me she would not raise it even to check if I had perfect sleep..the guy who took over her shift after she left checked even though they are not allowed to tell us anything and did say she tried 20 and also a bi-pap (earlier I asked her what do they do if 20 isn't high enough and she said they go to a bi-pap (like 21/26 or something).

Because she had said that she would not go higher if sleep was perfect at lower, I am assuming maybe I needed a higher pressure than q6 but I have no idea what he will set it at once I see doctor. The technician for supplies told me when I asked if it is too high that one will not be able to stand it (it will hurt chest)..I noticed nothing like that when I went to 20 on my own, but the sleep lab guy said if it is too high, it can cause you to stop breathing (cause sleep apnea)..

I am on a very low, poverty income due to disability (other problems) and only have $125 a month after bills so very poor. Insurance I am on covers one mask a year..not sure if they cover all kinds of masks. Something like for glasses they only cover the cheapest but think if it's about 150 or so it's OK..

The machine technicians said they will exchange the new mask I just got a week ago (I use the profile light by respironics--gel but it is the only one that fit and it is too big...really. My nostrils are long ovals not rounded and the area between nose and lips is small and I feel it is kind of pinching off the amount of air I get as it I pull it too low, it leaks due to sitting over mouth kind of. so maybe I am not getting enough air and thus mouth breath..not sure. Plus I used two hoses hooked together to keep machine away from my hear and I just read if hose is too long, the pressure can be reduced.

At the sleep clinic, they said I new mask recently came out that is more petite for smaller faces called fisher paykel 406 flexfit and that is what they used for the study. The man in the morning brought the nose pillow one in and I tried a minute (I have never used a nose pillow as the air going up my nose at higher pressure bothered me. It was the resmed swift. He said it doesn't leak as much and helps people more.

My sister is going to buy me one and the medical supply company may exchange so I could get two mask. I came to a few forums for the first time due to these problems and heard people (especially ones on nose pillows rather than nose mask say they had to tape mouth shut. I tried it but became kind of claustrophobic or maybe a better word is scared and labored and uncomfortable and finally took off. I tried a smaller piece of tape but air still puffed out sides so it did not help. I was thinking I would try again not using until I wake up to use bathroom (get up 3-17 times a night to pee) and maybe I would not be as freaking out with the tape and eventually get used to it but I kind of doubt I will.

I just heard for the first time about full face masks as my respiratory therapist only brings a few masks and never mentions..I have been on same mask several years so that makes it easy or him I guess. I also heard about the total face mask by respironics which I am seriously considering but I heard it leaks by temple. A few people solved it with putting tubing or padding there but I didn't understand what they were saying. I feel this might solve my mouth breathing and give me full pressure but some said it pressures of 14 caved their mouth in like a lemon and pushed in their lips.

Because I will never get a chance for some time to get right mask if these don't work I desperately need to make the right choice on the two best masks for me.

So I have small face (despite obesity I guess), small area between nose and lips, long thin nostrils that don;'t give me maximum air, mouth breathing and leaking, obsessive compulsive as far as things driving me crazy as far as lack of comfort, very high pressures. I have a permanent dent in my forehead from a previous mask that kept giving me water blisters and now have a big permanent dent marring my looks..the gel does not do that and I don't want a repeat. I am desperate to make the right choice.

It is also hard to tell when you try them on for a minute how they will be when using all night. Although I will not act on it, I am starting to feel like killing myself again if I can't solve this and wishing maybe I'd die but knowing me I won't act on it but all the misery is not something I want to go through again.

I feel utterly alone, desperate, and hopeless. Please help me and tell me which mask I would be best with. Would the total thing be a bad choice. I read they mostly sell it to bedridden patients who sleep on their back and some say it leaks and other say it is good but may only last 3 months as the plastic by nose breaks off and I can not get another for a year. What are the full face masks like..are they uncomfortable?? which ones are good and why or bad and why, Thank you for reading this and advice and if you think of any questions to ask my sleep doctor I will see him later this week.

Jane

Janie,

I had the same issue with high pressure and my mouth dropping open as I fell asleep. The answer for me was the REMStar Auto C-Flex CPAP machine which automatically selects the correct minimum pressure to counter your OSA plus when you exhale the pressure is released to a lower level. I had a battle with breathing through my nose against the pressure but when the pressure drops on exhale it's so much easier and the pressure is taken off my mouth for exhaling. Upon inhaling the pressure returns. Your insurance has a responsibilty to resolve your compliancy issues. Speak to your doctor about forcing them to pay for the automatic machine. If he writes a prescription for it they need to comply. I hope this helps.

SleeplessInLasVegas

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, auto

Jane,
I am so sorry to hear that in all this time you have not been able to get your treatment optimized so you can feel better. You must feel totally depleted if you have been struggling with poor sleep so many years. Others on this forum have experienced this and understand how horrible you feel. I'm one of them, and I want to encourage you to believe that you can and will get your treatment straightened out and regain your life.

My first recommendation is that you not self treat until you can be sure to do so in ways that will help and not harm you. Your degree of sleep deprivation can affect cognitive abilities, and your desperation level could lead you to make desperation moves.

If mouth breathing or large mask leaks are a problem, increasing your pressure is not the answer. That will only make the escaping air escape at a higher rate. And higher pressures can actually cause leaks. Not to mention, the higher the pressure, the greater the risk of causing central apneas. I'm sure others will chime in with advice about mouth breathing, it hasn't been an issue of mine. And hose length - someone will know that also.

I certainly don't understand your provider ever turning your pressure down to 4, or was that supposed to be 14?

Methodically address your issues. Have you asked your provider how to address mouth breathing aside from chin straps? Tell whatever doc is treating you, "My cpap therapy is not working. We need to figure out why and how to fix it. I am at the point where this has to happen, and nothing short of effective therapy is enough."

You will gain much useful information on this web site from some very helpful people who understand what you are going through. If you register and list your equipment and even study results, you will be able to get more targeted help.

Lastly, if you have other interruptions to your sleep stages such as movement disorders, you will feel better with cpap treatment, but not good until your sleep disruptions from these movements are addressed. Gotta treat the whole sleep picture.

I know it's hard to think of tackling all this when you are already exhausted. Keep your eyes on the prize.

Kathy

Jane,
You've received excellent advice!
Although you are extremely tired and depressed, I hope you can work on losing weight; that will also help in your cpap therapy.
I strongly endorse an APAP with C-Flex!
Chin straps did not work for me either.
There are tapes on the market that are easy on the skin. Taping has made a difference for me, as I am a mouth-breather, and cannot wear a full-face mask. I find that, for me, they provide a larger surface for leaks.

Have you tried either the Comfort Lite 2 Simple Cushion (easy on the face, and comfortable for me, anyway), or the Activa, which rarely leaks on me. I am a side-sleeper.

Your sleep deprivation is most likely the agonist of your depression, not to diminish any other causes, but it "keeps it in the forefront".
Do you have PLMD (Periodic Limb Movement Disorder)? Legs &/or arms suddenly jerking and waking you? There are medications for that, Mirapex being one. Talk to your doctor about that issue; it certainly can interfere with my sleep if I don't take my meds within the proper time frame.

I'm not one to give this advice, but ANY kind of exercise is most beneficial to general well-being and sleep.

As suggested, be emphatic with your doctor(s) about your treatment, and let them know what's not working.

I know you don't really want to go through with the suicide, but can understand it fully. I think we would welcome going to a place where there is no longer pain - emotional or physical. The permanence of it stops us from fulfilling that urge, in addition to wanting to know what 'tomorrow brings'; that shows that we have some faith in our abilities that seem to be latent at the moment.
Know that there are others who DO care about you - whether or not you realize it or know them.

Although I couldn't add much to the previous posters' comments, I did want to let you know that you are not alone. Most of my support has come from the kindness of people on this forum, for some have had similar experiences, or the empathy to "understand", and care enough to provide an "open door" for support of any kind. I am happy for you that you have found this unique place!

Keep us posted on your progress. And remember it may not necessarily be a short road to success; few things are.

kteague wrote:I know it's hard to think of tackling all this when you are already exhausted. Keep your eyes on the prize.

That is advice that I will also keep in mind!

Kathleen

(I removed this because 'somehow' it was a duplicate of the above post by me. Hmmmm .

I can relate fully with you, my hopes are with you and NO you are not alone now. You have come to the right place for help and advice to treat your OSA. The people here are tops and have helped me and many others that have been where you are now. The more info you provide about the sleep study and your machine, the better and faster the forums here will be able to help you.

The right mask is key and your already working on that end so you doing good work there, stick with it and you will find something that works for you. I also got to the point of suicide, I have a nice big scar on my wrist to remind me daily of it. I too have done the anti-depressant run with the hospital stays and I can honestly say that for me, now that I have been helped by the people here to get it right, the Pap therapy has helped me feel better then all the years of the meds and Doctors I saw weekly ever did.

I am NOT BY ANYMEANS telling you to stop taking your meds or seeing your Doctors. I am saying though with getting this Pap therapy right you will get to a point where you WILL FEEL BETTER. Work with your doctors and this forum and you will see there is hope and a future you can look forward too.

Wow! I can't believe (although I DO believe you) that your provider didn't tell you about the full face masks!!! The one that I really like is the ComfortFull 2. I wear the small size as I have "petite" features. Once I got used to having this over my mouth and nose, it didn't bother me at all. Now I only use it when my nose is stuffed up. But.. I am able to side sleep with it on.

BTW, I was VERY claustrophobic the first few nights using the full face mask. VERY. Once I got my first full night's sleep though, it was like a switch went off in my brain and I was just fine with it.

I'm guessing that if duct tape won't keep your mouth shut at night (or keep the air IN), then most likely a chin strap won't either.

Kimberly

My sister weighted 340 pounds. She had many of the same problems
which you describe. The Doctor put her on Synthroid. She made up
her mind she couldn't tolerate her life anymore so she started walking.
Every morning, she walked 5 steps farther than the morning before.
Every night, she walked 10 steps farther than the evening before.
Now, it is 2 years later. She has done nothing but walk, walk, and walk.
Farther and farther and farther. I don't even recognize her as my
sister. She now weighs 135 pounds and she doesn't take her diabetes,
high blood pressure, depression, or cholesterol medicine anymore.
No one believes her. They think she had some major surgery, but
she is so poor, all she could afford was walking. Each time, a little
farther. No more CPAP for her. Somehow she just made up her
mind to change her life. A couple of steps at a time.

KimberlyinMN wrote:Wow! I can't believe (although I DO believe you) that your provider didn't tell you about the full face masks!!! The one that I really like is the ComfortFull 2. I wear the small size as I have "petite" features. Once I got used to having this over my mouth and nose, it didn't bother me at all. Now I only use it when my nose is stuffed up. But.. I am able to side sleep with it on.

BTW, I was VERY claustrophobic the first few nights using the full face mask. VERY. Once I got my first full night's sleep though, it was like a switch went off in my brain and I was just fine with it.

I'm guessing that if duct tape won't keep your mouth shut at night (or keep the air IN), then most likely a chin strap won't either.

Kimberly

I'm with you, KimberlyinMN! That sounds like it should be the first order of business. As far as the pressure, WOW! A Remstar APAP and software sure are needed, but probably would be hard to come by.

Be sure to register and fill in your profile, you for sure have had a bad ride, I hope the people here can get you on a better track, don't give up, it can be better. Jim

Dear sleepyjanie,

Could you copy the post you wrote and email it to someone at your sleep doctor's office? Ask them to have the doctor read it before you go for the visit this week. Just in case, take another copy when you visit the doctor and make sure he has read it.

There are many people on this forum who want to help you, but additionally you need some in-person professional help. There are many good people in this world and I hope you can find one to help you. I will be praying that you find someone.

Your case is not unusual. Like you, I was completely broken down by undiagnosed apnea and have rebuilt my life due to a good cpap therapy.

Please keep us updated.

rooster

meister wrote:My sister weighted 340 pounds. She had many of the same problems which you describe. They think she had some major surgery, but she is so poor, all she could afford was walking. Each time, a little farther. No more CPAP for her. Somehow she just made up her
mind to change her life. A couple of steps at a time.

Thank you, meister! And thank your sister for her inspiration, and congratulations of her fortitude and success.

Although I'm not overweight, I KNOW it is imperative to my overall health (mental and physical) to exercise, and I am going to do the same as your sister - walk, walk, walk.

I know that I will have more energy, be better able to fight depression, and also prepare my body for the strength it will need in years to come.

Thanks for the "kick in the butt" - something I needed.

p.s. I'm currently on a team of caregivers to a 71-year-young lady who has had Parkinson's Disorder for 6 years. She has speech and walking problems. I was amazed at her strength! She gets up from a sitting position using nothing but her legs, even after hours of sitting. I asked her if she'd exercised a lot, and she replied that she walked 2 miles daily for 20 years. I might add the she has all of the physical attributes of an 18-year-old.

Yours is indeed a complex, but very common one today.

You did not mention your weight or home environment.
You may not be helping yourself by discontinuing meds on your own.

You do not appear to be using an apap and if so, all the pressure changes are purely guesswork.
Few here have experience at your pressure levels, but this does not prevent good advice including your inability to find the perfect mask.
You appear to be high anxiety and do not seem to have a good support system around you.
You need SOMEONE to help you get through the day and I do not mean a person who agrees with you and enables bad thought and health habits.
You may need a kick to change whatever needs changing because it is evidently not working.
You may be unable to adopt a more positive outlook for defeated reasons.
Your outlook and attitude could certainly benefit from a mental health professional.

The exercise- walking- sounds like a good idea and I wish I would take that advice.
Your suicidal ideations are of great concern.
You need to do SOMETHING different. And NOW.

tomjax- in 2nd day without a smoke.

tomjax wrote:.......
You need to do SOMETHING different. And NOW.

tomjax- in 2nd day without a smoke.

tomjax: Well, you have taken your own advice, and I commend you on it!
Keep up the good work!

Jane, The agony you are suffering, both mental and physical, comes through loud and clear in the post and my heart aches at the thought of all you have gone through. It truly makes my 'sufferings' seem somewhat trivial!!.

I agree with all the advice that has been given here, but would like to add a couple of things. First of all, you need to know that getting better with sleep apnea therapy can take some time. As many have said on this forum, you have years of sleep depravation to 'make up' and that does not happen overnight. It doesn't take forever, but it may be weeks, even a few months before you will notice a difference. For some few it is more instantaneous, but for most it is a gradual improvement until one day we realize "Hey, I feel better!"

Another thing I want to mention has to do with oxygen. If you are considerably overweight, and in view of the other health problems you mentioned, it may be that your blood oxygen saturation is too low. I was diagnosed with COPD (chronic obstructive pulmonary disease) several months before my sleep apnea diagnosis. My pulmonologist put me on oxygen when sleeping. We naturally breathe much more shallowly when sleeping and if the lungs are damaged for any reason, they may not be able to provide enough oxygen to the body. Any saturation level below 89% is considered too low and, untreated, can cause many of the same symptoms as sleep apnea. What I'm trying to say is that you may need supplemental oxygen along with xPAP therapy. I had several of your symptoms before going on oxygen and I felt considerably better with just the oxygen even before starting the XPAP therapy several months later.

I've never used a full face mask, but it sure sounds to me like that is what you need. A lot of people on this forum seem to like the Fisher Paykel 431 and the newer 432.

Oh, and one other thing -- some weight gain can be attributed to sleep apnea and the brain not getting enough oxygen -- there's some kind of chemical change that affects the 'need' to eat all the time. I've lost 40 lbs and the only changes I've made are the APAP therapy with supplemental oxygen and changing from regular Coke to Zero Coke. I've been unable to do much exercise due to bone spurs in my feet and a back problem. I've had surgery for the bone spurs and am trying to get the back problems identified so, if possible, it can be corrected. Then I plan to aggressively hit the treadmill.

With all sincerity, I wish you some good luck. You certainly need some. Keep looking until you get a really good doctor who can help you with all this. You may be poor, but this country should be able to provide proper medical care for you. Please do not hesitate to post again to let us know how you are doing or if there are specific things we can help you with.

I am starting to feel like killing myself again if I can't solve this and wishing maybe I'd die but knowing me I won't act on it but all the misery is not something I want to go through again.

Jane

All of this suicidal talk is very alarming, have you sought out professional help? The C-Pap troubles mask problems etc. can be fixed and are some of the issues most of us here on this forum struggle with each day, but thinking about killing oneself is quite serious.

Hope you can get help before its too late!!!!

Dale