New Here..Have Some Questions

Pardon me as this post is quite long!

I am NEW and thankful to find this group as I am havinga hard time getting used to my mask with the CPAP and I keep getting told by the company that provided the equipment to give it time. I have very bad anxiety now on top of my medically diagnosed major depressive mood disorder I've had for a decade. I got my 1st sleep apnea study done the Friday night after Thanksgiving and my Dad died in his sleep at age 66 on December 4, 2004--totally unexpected as he'd been given a clean bill of health from a cardiologist and CAT scan tests, etc. yet even after that diagnosis in mid-November he complained of being cold and tired. I came back from my father's funeral, called my family doctor and sure enough I have sleep apnea. My mother refused to have an autopsy done and the death certificate says myocardial infarction which can be a result of sleep apnea. Dad was a smoker and very annoying snorer and the last pictures made of him in Branson on vacation the week of Thanksgiving 2004 show a tired man with heavy bags under his eyes and pale skin.

Now on top of my grief, knowing my father died of suspected heart attack in his sleep as my mom woke up to pee early that Saturday (like 6 a.m. and not for the day) and Dad was fine and about 4 hours later, she didn't hear him breathing, saw his color changed, touched him and he was ice cold. Dad didn't move or make any noises to awaken my mother in time to get paramedics there. Is that typical? Yes, my father was a smoker but Mom said for about 2 years all he'd do is talk about how tired he was. My father knew I'd had a sleep study done and should go himself and then boom...a week later it was too late. I am so sad as my husband has severe abrupt sleep apnea and refuses to use his machine even though he's overweight an insulin dependent diabetic, and was hospitalized for a near death infection that required 2 surgeries in September with a month of recooping at home.

2004 was a hard year as not only did I lose my father, but lost my father's mother (my last living grandparent) in May 2004 shortly after Mother's Day, saw my brother and 2 cousins go through divorces, got diagnosed myself with high cholesterol and then sleep apnea. I just got my CPAP machine on Wednesday (as in 3 days ago) and already I am freaking out. The pressure doesn't bother me at all, ramp or full blown, but I am struggling with mask leaks and the awkwardness of the tubing. I do have the heated humidifier and was smart enough to insist on the "full face" style mask because I grind my teeth at night and am prone to talk in my sleep and told them even though I was "still" the night of my pressure test, that didn't mean I wouldn't breathe out my mouth when I was home in my own bed as I have horrible allergies/sinuses.

I wish I had a video to watch on how to get the mask on right. I got a "live" how to do it but with no mirrors. I am blind as a bat without my glasses on so it's frustrating. Now I have red marks on my nose with some bleeding because I fear the mask leaks. If I get the top portion with some "give" then I leak below the mouth. I have been waking up in the middle of the night as all this is new and I'm still learning the features on my machine but I think it has the alarm. How bad is the chin strap? I already feel horrible as the mask and headgear are bugging my dry skin. I can't drift off to sleep well at all between my grief over my Dad dying less than 2 months ago and the worry my mask and headgear are put on wrong. The guy at the equipment place who showed me the setup said it takes 2-3 weeks to adjust but hell, the fear is eating me alive. My 4 year old son freaked as he woke up before I did the first night I used the machine and he went into hysterics screaming "Mommy, what's wrong with you?" and crying.

I will be seeing my psychiatrist on January 27th to let him know this new diagnosis as it's a med follow up. Now I wonder if a lot of my problems I've had since high school are a result of having had sleep apnea and not knowing it til it got bad enough I can't function (mine is mild to moderate with 16 average episodes an hour). My psychiatrist recommended Ambien months ago which I've been taking religiously at night. Sure enough when I asked my pharmacist after finding out about the sleep apnea, I was told by the pharmacist not to take Ambien to get me to drift off as it could prolong the amount of time I stop breathing during sleep. Also a friend of mine sent me an email saying that the PCOS (hormone issues) I have along with being overweight can contribute to sleep apnea. Some days I just feel damned.

What should I tell my shrink because he has got me on such a high level of Zoloft, the Ambien, meds for ADD and panic attacks and now this? Do any of you have major depressive mood disorder? Yes Dr. How am I doing? Gee my dad died just a few weeks ago, I have sleep apnea and am on CPAP and I still can't drift off to sleep because of grief and learning to adjust my mask. Now I wonder if the ADD stuff was just from lack of sleep or truly a focus issue. I'm one of those prone to falling asleep behind the wheel of a car or nodding off during the day and not realizing it.

At this point I'm open to any suggestions. Oh and my vent, insurance took it's sweet time to approve my machine until after January 1st so on top of all the debt I'm in from flying to 2 funerals and having Christmas with my family out of state, I had to pay $500 deductible that would've been met if they pushed it through sooner and not used an insurance card I had from 4 years ago with incorrect Group and policy numbers. I swear the medical profession is really lacking like I've seen in other posts.

Thanks for reading such a long post from a 36 year old with issues and grief!

Welcome Elizabeth!

You sure have a long list of difficult things to deal with. It only stands to reason you might have problems with the treatment, especially at first. I'm not saying that maybe some adjustment might not be in order, with the machine or change of mask type, whatever. But even with the best system, you might struggle some, especially if you can't sleep due to worry or thoughts of family and loss. During a time when I've struggled with my mask, the doctor said it helps to try and calm down and ease back into using the mask. Easier said than done sometimes, right?

Just keep checking in here at the forum, and feel free to use the private message feature. Kind people here will help you out, I just know.

With all this, we all wonder sometimes which came first, the chicken or the egg. But it doesn't matter. At least you're getting treatment....that's what matters. The pain of your losses won't go away for quite some time, but you can honor them by taking care of yourself.

Keep in touch.

Linda

You poor thing, you have certainly been through a lot in the last months, but be assured that many of the things you have described are caused by the sleep apnea. Weight gain, depression, anxiety. And it seems to go along with ADD, either as cause or effect.


Do you take any meds at night for your allergies and sinus condition? You might try a benedryl or too (generic equivalent is about 1/2 price), this might make you sleepy enough to go to sleep initially. You might also try some relaxation exercises, like the "now my toes are going to sleep, now my ankles, now my shins, now my lower legs...." and breath long and deep while you are doing it and think about making that part of your body very relaxed. Probably before you get to you chest you'll be asleep.

Hopefully, you've had a talk with your child and assured him there is nothing wrong with mommy and this is just something she has to wear so she can breathe good at night. Probably should have showed him the gear and stuff the first day home with it and let him see you wearing it. Would be a good idea in the future if you get a different mask.

regarding the chin straps. I've used one and they do work to a certain extent, others have tried taping their mouth closed, and I tried that and it was okay except I had to take it off to take a pill during the night and then it didn't stick so well. I found out after about 3 weeks on APAP (automatic not constant pressure) that I could totally do without the chin strap as I wasn't opening my mouth anymore.

I haven't used the full face but have used the Breeze (didn't like the movement of the head gear) and switched to a Swift with nasal pillow. Very light weight, barely feel it on the upper lip whereas with the Breeze nasal pillow it created a lot of pressure on my upper lip to adjust the pillows correctly. I can wear the Swift with the straps very loose and it still stays in place with no leaks.

You can try using a Ace Bandage and wrapping it around your chin and up to the top of your head for a makeshift chin strap.

Will your DME allow you to switch masks or are you stuck with this one?

There is a thread here about wrapping an Ace Bandage around a full face mask to get rid of leaks too. You might try a bandaid where you are having mask pressure problems or some moleskin. Usually this happens if the mask is too tight

Try to convince your husband to wear his CPAP. Yes, it is true your father probably suffered from this condition too. And apneas frequently occur the worst toward early morning, this is why there are so many heart attack victims in ERs early in the morning. Tell your husband you can't emotionally or physically go through what you did with your father if the same thing happened to him. Get him to read the various articles available on the internet regarding sleep apnea and heart attacks, even death (Reggie White). This isn't an option, it is a necessity if you want to continue to be around to see your children grow and graduate and become adults. It is a necessity if you want to live a full life. It's a necessity if you just want to live!

Sleep Apnea is also hereditary to some extent. You may have inherited it from your father. I think I inherited mine from my father and my 32 year old son has it also.

Treated correctly, sleep apnea will help you lose that extra weight too, and that in turn will help your sleep apnea if you have Obstructive since the weight loss will help open up your airway.

If your husband uses the excuse he can't stand the mask or the pressure, emphasize to him there are many different masks and many different machines. He may have a straight CPAP and need the auto-adjusting kind, or one with the CFlex feature. Machines now are much quieter than even a few years ago.

Try to get him on this board or one of the other ones and get him to start voicing his concerns so he can get feedback from others.

People who have two machines in their closets have decided after getting feedback on this forum to give it another try because talking to others going through the same thing can get you all fired up to really make it a go, knowing how important it is.

Try wearing your mask with the machine running to watch TV or read so you don't notice it as much. USe it when taking naps.

And remember if you have any problems or questions, we are here for you.

Read through the other posts, I'm sure there will be many topics that will interest you and let you know you're not alone out there.

I was experiencing what I thought were leaks around the botttom of my ff mask. I talked to my dr. she said it was just the exhalation ports and that it was normal. what I was feeling was the air venting out of the mask. which full face mask are you using? I have the respironics comfort full mask. I also found if you tighten the mask too tight it will leak more. I was on a straight cpap machine for three weeks and actually felt more tired than before I ment on the machine. I switched to an auto pap machine last wednesday and feel a little bit better. I have realized that this is not got to improve over night for me like it does for some people. So I am going to take it one day at a time and hope for the best. I hope this helps

Elizabeth

You will be happy to know you have come to the right place for what you need. Information and support.

I found this forum at the beginning of January and was shocked to find out how many people are out there struggling with this. As you read through all the posts you will find so much help out there!

I myself have recently gone through a divorce, have 2 teenagers living with me, have lost both parents over the past 2 years. My job has been suffering from lack of sleep and I have never felt so sad in all my life. Lack of sleep affects the total person you are.

I now have a mask that works for me (Ultra Mirage Full Face) thanks to this forum and am experimenting with an Auto pap and am starting to feel more rested. When your body is not properly rested it can trigger so many other problems, so just go baby steps and start working on figuring out through this forum what works best for you with the CPAP, mask and any other issues you have with sleep apnea. You will slowly start to feel better but give it time.

Look forward to hearing from you,

Lisa

I too had a problem adjusting to a full face mask. I wore it only a few hrs at a time at first but slowly got use to it. You will too. Leave it on as long as possible, then take it off. Soon you will have it on all nite. good luck.