New and in need of help

Hello, I am pretty new to cpap, and hate it. Since I have been on it, I don't sleep worth a darn any more, am constantly tired, my head seems as though it's in the clouds, I can't hardly see straight, I get very dizzy when going down the road, and it's causing me a ton of anxiety. So much so, they started me on meds. I have had pretty much every test, trying to figure out what the heck is going on. I have severe apena, with some central apena. Before I started this, my life seemed normal, but I had snored very loud, and would stop breathing every so often at night. I wake up with every move I make, so I don't have any leakage. Now they say they want to re-study me and start me on a machine that will force me to take a breath if I dont. Does anyone know about this? Will I need a machine to breathe for my the rest of my life? I tell the doctors I'm worse off now than ever in my life, and all they say is no you're not, your better because you haven't been to the ER since you have started this. I went to the ER on night as I woke up, and couldn't catch my breath. Two days later, it happened again, but during the day, and I'm 95% sure it was anxiety induced. I'm pretty nervous, and kind of scared. I haven't even been able to drive a vehicle on over a month. It's affecting my job alot, but most of all, it is very bad on my personal life. I'm not sure what to do anymore. I just want my lift back. Please help me.

Some suggestions/thoughts:

Fill out your profile and/or tell us as much as possible about the equipment you're using and your prescribed pressure for the machine.

Do you have a nasal mask?

Ever wake up with a dry mouth?

Do you have a copy of your sleep study?

What meds?

Den

You need to go into your profile and fill it out with the equiptment you use and what you do and your pressure you are set at. You also may beed to be retested and get a better machine.

But just a WAG, you are using a Nasal Mask, and are probably loosing your treatment pressure out of your mouth and need to tape your mouth air tight or to use a Fullface Mask. Welcome to the forum, and yes, XPAP is for life, the more it's used correctly, the longer you get to use it. Jim

Den, Your wife didn't come in and bother you, so you beat me. No it wasn't a good bother, just a normal one like always. Jim

I have a Fisher-Pakal machine, set at 10, a swift II nasel pillow set up. I have woke up with a dry mouth twice in over a month, and pretty much wake up right away when it starts leaking, or if my mouth is a little open. The anxiety meds are Sertraline, and Atavan. The Atavan I only take when I need it, and take the other one once a day. They also have me on Ambien to help me sleep, but it doesn't work.

Wow, some have it rough, but it sounds like you're leading that pack for the moment. I'll let others weigh in on the technical stuff. I just want to say if I knew I had centrals and it was recommended I get a machine that would breathe for me if I stopped, I would take great comfort in that.

It takes a while in most cases to get this treatment optimized so that it does all you need it to do for you. You've made a good start by seeking to become informed. When all seems so mysterious, it's easy to give it more sway than it merits. Demystifying the terminology, procedures, equipment, etc. should make this all less ominous. The more empowered you feel to understand and partner with your doc in your treatment, my guess is the less anxiety you will feel.

Best wishes for sorting this all out.

Kathy

First thing is to take care of that mouth leaking. Very dry mouth with a nasal mask usually means you are leaking air out of your mouth. Many of us here use tape or such to keep the lips sealed. Fold under the edges for quick removal. Gentle paper tape works well.

Or you could try a full face mask.

I may be wrong, but does your F and P machine have exhale relief or data collection? I am tempted to say not, but without knowing the model and looking it up I don't know.

Hard to tell what is wrong without some kind of data. Hard to know if your pressure is correct without having data, and that could also contribute to your problems.

Leakage from the mask can cause you to wake up. The swift (I use one) is a bit noisey. Can you use ear plugs? Or try a a different mask? I really love my swift but I know what you mean.

Another way to cut down on leakage with the swift is to make sure the hose is not pulling. Some put a hook on the wall behind the bed, I just diaper pin the hose (with a piece of tape around the hose to put the pin through, to the sheets so I am not dragging a bunch of weight around and messing with my seal.

Also, make sure that your straps are the right tighness, not too tight but enough. They stretch and change over time.

I also use an ace bandage under my chin and over the crown of my head. This does 2 things. Stabalized the swift (put the swift on first) and helps keep my jaw up then I tape.

Those are my best ideas for things you can try right now.

If you doc wants you to have a machine that will force you to breath if you don't then go with it. But try this stuff first. It does take some time to get used to all this.

Sometimes when you have central apnea, it can be made worse by a CPAP. But you have to fail CPAP treatment for some insurcances to cover BiPAP. My guess is that you will qualify for BiPAP and your therapy will become much more comfortable. When I have patients that struggle with CPAP I have them try it during the day to get used to the feeling. Try it for a while without the pressure of going to bed. My best advice is to get the next sleep study and get put on a BiLevel machine. I have had alot of patient success with the newer BiPAP Auto SV or the Malibu.

I hope that you will stick with it, because there are many on here who have had big problems like you and they have made it work with the help of this forum.

I don't know about centrals because I don't have them, but from what I've read on here, it's true that you have to fail on the cpap for them to give you the machine you need. Kansas RT knows a lot more about it. I think it's a shame that they have this approach, but that's how insurance companies are.

I do wear the Swift and I was having mouth leaks, but the good folks on this forum helped me solve that problem. It takes some work, but has made a huge difference in my life to get it worked out.

Good luck and keep coming back for help. You can work it out.

pberg3571 wrote:Hello, I am pretty new to cpap, and hate it. Since I have been on it, I don't sleep worth a darn any more, am constantly tired, my head seems as though it's in the clouds, I can't hardly see straight, I get very dizzy when going down the road, and it's causing me a ton of anxiety.

The beginning of cpap therapy can be difficult. It can be difficult when you have the right machine and pressure setup, and it can be even more difficult when they have to start you out at something that isn't the right thing....

So much so, they started me on meds. I have had pretty much every test, trying to figure out what the heck is going on. I have severe apnea, with some central apnea.

Central apnea means you stop breathing because somehow your sleeping brain doesn't identify the conditions that mean: "OK, time to breathe in again". And so instead of sleeping deeply and peacefully, the lack of oxygen, caused by non-breathing, wakes you up. With OSA - Obstructive Sleep Apnea, the non-breathing is caused by your upper airway collapsing and obstructing, and you struggle to breathe against the obstruction - and wake up. These awakenings are very similar to anxiety attacks: You're sweating, your heart beats like crazy, and you're terrified, because a fraction of a second ago you were literallychoking.

Before I started this, my life seemed normal, but I had snored very loud, and would stop breathing every so often at night. I wake up with every move I make, so I don't have any leakage.

Both kinds of apnea - central and obstructive, keep you from getting a good rest as you sleep, and they are not good for your health in the long run. Lack of oxygen, and the struggle to breathe are very bad for your body - even if you don't feel the damage now. Like high blood pressure, which, by the way, is frequently caused by OSA.

Now they say they want to re-study me and start me on a machine that will force me to take a breath if I don't. Does anyone know about this? Will I need a machine to breathe for my the rest of my life? I tell the doctors I'm worse off now than ever in my life, and all they say is no you're not, your better because you haven't been to the ER since you have started this. I went to the ER on night as I woke up, and couldn't catch my breath. Two days later, it happened again, but during the day, and I'm 95% sure it was anxiety induced. I'm pretty nervous, and kind of scared. I haven't even been able to drive a vehicle on over a month. It's affecting my job alot, but most of all, it is very bad on my personal life. I'm not sure what to do anymore. I just want my lift back. Please help me.

There are a number of people on this forum whose machines nudge them to start breathing again if they stop - and they're all happy with the treatment. "Force" is a strong, and frightening word for that gently, insistent nudge. The machine works differently, it's more expensive, and that's why insurance companies want to be sure you really need it... Your need for this machine means that while you're asleep your breathing control gets messed up, and needs support. It doesn't imply anything about your breathing (ability to breathe) when you're awake.

The thought of sleeping with a breathing machine seemed harrowing in the beginning to me too. Every night, for the rest of my life???? But the changes it made to my pleasure in sleeping, and to the way I feel when I'm awake are so big that the machine mask and hose are some of the most comforting things I see when I go to bed.

Think of this period of getting used to treatment as you would thing of a time with a cast on your leg: until the broken bone knits, until you get used to the therapy the going may be rough. You may even want to consider taking some time off from work if you can.

When your therapy is properly figured out many things will be better. You'll be able to drive without exhaustion, concentrate better at work, enjoy your sleep, probably have less general anxiety.

Hang in there. We're here to help, and we've been there, and done that in a way most of your doctors or RTs haven't - so this is where you'll get the tips you need in order to make it work.

If you're on you way to machine with breathing support, it'll probably have full data capability to it.

Good luck.
O.

Last night wasn't the worst night ever...I acutally slept about 6-1/2 hours, and know for once I could have slept more, but had to get up for work. I just hope I can do the same on the weekend. I did experance leaking from my mouth twice last night, but I think I woke up right away. I can't use tape, as I have a moustash and beard. (OUCH) I hate the idea of a full mask. Has anyone else ever had the problem with not being able to see straight? Getting very dizzy going down the road? I feel like someone took away my livelyhood. I open the garage and see my truck and Harley, and just about start to cry. It's been over a month, and I don't think I can take it any more. I even tried going woth out the cpap for two days, but my head never cleared up. I'm not sure what's going on. I love the input from experenced people! I'm so gald I found this site!

I had some pretty seriously messed up days early on. I think the disturbances of hose, mask, leaks, etc. were much harder on my body than apnea. Now I use Polident denture adhesive strips to keep my lips closed and the elastic bandage to keep my chin up (minimizes stress on the lips). I wear earplugs most of the time too. All this plus pur-sleep oils make the night fly by much smoother now. I'll still lounge around for up to 11 hours on a weekend when I have nothing pressing to do and don't mind the hose at all any more. Actually look forward to bed.

Work hard to eliminate your problem areas one at a time, it willl become much better.

TerryB

Cpap does not work when you breath thru your mouth with a nasal mask so you need to eliminate mouth breathing to give it a chance to work. If you need to shave your beard to eliminate mouth breathing you need to do it.
GeneS

The dizziness suggests to me that there may be an inner ear problem (possibly aggravated by the xPAP pressure). I'd be inclined to want to see a good ENT specialist to check out my ears THOROUGHLY.

Are you at any risk for pulmonary problems such as asthma, smoker or former smoker. GERD or relux? Are you ever short of breath during the day other than during extreme exertion? If so, at the very least a spirometry test might be in order or at best a full pulmonary function test.

Have you thoroughly checked online the possible side effects of Sertaline and Atavan?? Could they be causing some of the confusion, dizziness, etc? I know when I was scripted Desyrel (trazadone) at a low dose for sleep (and I took 1/2 of the scripted lower dose) I experienced first and only "out of body" experience. Dizzy, tingly, high .... I refused to stay on it in the hopes my body would adjust to it despite the doctor insisting I do so.

I also remember a time I had a sinus infection so bad my head felt like an overinflated balloon, my eyes teared so bad I could barely see and I was losing my sense of balance. What really flabbergasted me was my doctor was an osteopath and he did some manipulation (it seemed like he was trying to crush my cheekbones and drive my head thru the table to the floor) but when he had me set up my head was clear as a bell!!!!! (Back in the late 1960s, early 1970s). He gave me some pills to keep my sinuses clear and that was it. Not too many osteopaths do or are any good at manipulation anymore. At least not in our area.

Your sinuses and ears are closely related and your eyes too to a lesser degree. I'd really want to investigate any relationship to the CPAP pressure, your sinsuses and your ears.

I am so with you. I am just starting out and the anxiety is killing me. Plus during the two month span between tests I was diagnosed with high blood pressure (which can also give you the anxiety, dizziness). I'm hoping to have my cpap machine before I have a stroke or die. And I've reluctantly decided to go with the BP meds. Keep me posted, you're in front and I'm following....