Mixed apnea or something...and my fears!

[CrazyDreamGirl]

Hi to whomever reads this, and thank you.

Honestly, I think I'm just looking for some comforting words or even sympathy, although positive experience with this situation wouldn't help.

I got diagnosed with sleep apnea 2 months ago and since my apneas averaged 102 an hour, I am now on a BiPAP machine. As one technician said, I "failed CPAP." I went for my second follow up appt yesterday and although my apneas are down to about 10 or 11 an hour, if I understand correctly, about 6 per hour are central sleep apneas. So the doctor reduced the pressure on my machine and wants to see my in two weeks instead of four. I'm pretty new to all this and don't know all the lingo that so many of you have down pat yet.

Of course I went to the Internet to read what I could about central sleep apnea. Some things I read were comforting - others really scared me. I can't tell you if I had any central sleep apneas previously - I don't think so, but I haven't seen my report although I meant to ask for a copy. I'm about 25% overweight and embarrassed to be so. I actually exercise more than most people I know - just eat too much, and have had an addiction to sugar and carbs for several years - which I now understand can be a result of sleep apnea. I had a physical a few months ago and except for my triglycerides, all my numbers were decent and I haven't had heart issues.

I'm just nervous with the idea that my brain has been forgetting to tell my body to breathe! I'm hoping the change in pressure will make a difference. Although I'm in my 40's, I live in the same town as my parents. They know a little about this sleep apnea, but I don't want to worry them with too many details, or my good friends either for that matter - at least not before I know more about this. I live alone and am really wishing I had a partner (husband) to help me through this. My serious boyfriend died of cancer in 2006 and I am still feeling the loss at times. I know he could have dealt with this and helped me to as well. I've taken an antidepressant for several years and I'm actually kind of afraid I may have caused the central sleep apneas by my medication - I don't know - maybe it's just the BiPAP.

Just feeling a little anxious about this - okay, to get to the bottom line, about not getting rid of the CSA and dying in my sleep. Anyone go through this? Thank you for whatever you can offer.

[CrazyDreamGirl]

Oops - obviously I meant "positive experience wouldn't hurt" not "wouldn't help." I need to try to sleep soon. I've always been a night owl.

[Bons]

I'm about where you are - diagnosed in August, spent two weeks on Cpap, bumped up to Bipap, and now I'm on ASV because of central apneas increasing after starting on treatment. Having central apneas does NOT always mean you have heart or neurological problems - they could very well be related to the pressures from your pap. It's easy to panic and think that they are, but if your regular doctor hasn't seen other problems, odds are you are fine.
I absolutely hated my ASV when I started on it, but after two weeks I'm learning to deal with it and sleeping pretty well with it.
Talk with your doctor, and he can give you better reassurance.

[Hawthorne]

Sometimes too high a pressure setting can cause central apneas so lowering the pressure could be helpful.

You should see if the lowering of the pressure makes a difference. It will take a few days to a week or so to get adjusted to the new pressure. Try not to be too concerned. Even people without sleep apnea can have centrals sometimes. You will be seeing your doctor in 2 weeks so that is good timing to see if the lower pressure helps. Sounds like your doctor is on top of this.

Would you use the "User Control Panel" at the top of the page an fill in your equipment? People here can help better if they know exactly what machine and mask you have.

You are getting therapy and that is the the most important thing right now. I don't believe you will die on your sleep since you ARE getting therapy. You just need to get it optimized and that can take some time.

Lots of people here have gone through this! You have come to the right place!

[Twentysix]

Can't offer any words of wisdom here, but I would like to wish you good luck with solving this and getting more relaxed, so you can sleep soundly. All the best.

[Junebug999]

Hang in there CrazyDreamGirl -- I am into this journey about 4 weeks and it does get better. Try not to worry -- one thing I do when I put my mask on at night is soon after it is covering my face (I wear full face mask) I say into it, "hello old friend." That helps me accept it and the therapy. I see it as a positive, I see the mask as my friend that is helping me toward better health. Hang in there!

[Big Daddy RRT,RPSGT]

Post your settings and equipment. This might help get a little more feed back. 6 centrals an hour doesn't sound that bad. A lower pressure might help. What pressure were you on, what are you on now?

[CrazyDreamGirl]

Hi Bons, Hawthorne, Twentysix, JuneBug999 and Big Daddy!

Thank you all for your replies. I guess I'm not really worried that I'm going to die in my sleep anytime soon - just a little concerned for the long term after reading what central apnea is.

Bons - you really are right where I am the journey and timing.

I'm not having too much trouble getting used the the mask - and it has been two months - although sometimes I seem to need to tighten it more than other times and it will leave marks on my face and I'll wake up with a slight headache - this seems especially true when I take a nap, like I did this afternoon.
A couple times though, I've woken up in the middle of the night with my hose and mask lying next to me on the bed and I don't really remember taking them off. Hate it when that happens.

I'll try not to be too concerned about the centrals as long as I am being treated. My doctor said he didn't want to have me do another sleep study. That wouldn't bother me except for the cost. As it is I'm on a payment plan for the first study, which was over two nights. I'm employed less than half time, so it's hard to add any more bills. The cost seem a little outrageous - my part is $699.00 for one night and $900 for the second night. But that's another topic.

I have looked all over my user control panel and can't tell where to enter my machine/mask info. Can someone tell me specifically?

Thanks again, everyone. I DO feel a little better.

[cflame1]

user control panel

then

profile (or user profile... something like that)

then

edit equipment (on the left side)

[CrazyDreamGirl]

Thanks, cflame1 for the info.

[JohnBFisher]

CrazyDreamGirl, it's time for the old exercise. Take a moment, close your eyes, and take a deep breath. Exhale. Repeat. Feel the tensions and anxiety draining away! Okay, my bill will be a humnugous ZERO. And now you can breathe a sigh of relief! 8^)

Okay, with that deep breath out of the way let me launch into the education portion of this public service announcement.

Bons and CrazyDreamGirl, while you do have central sleep apnea, you probably both have it as a result of the pressence of increased pressure. There are LOTS of studies that show that simply increasing the pressure you breathe can trigger central sleep apnea.

So, what causes central sleep apnea. Well, first let's tackle what causes us to breathe. Please understand that the mechanism that triggers breathing during sleep is quite different than when we are awake. While we are asleep the build up of CO2 (and not the lack of oxygen) triggers our breathing. In fact, as the CO2 builds up it changes the PH (alkanity / acidity) of our blood. We have receptors that sense this and trigger a breath to blow off that CO2 building up in our blood. It sounds complicated. And trust me, it is. I was quite surprised at how complicated the process is. I've simplified it here (partially because I do not fully understand it).

However, there is a KEY message here. Breathing is DEEPLY built into our bodies. We simplify the process and say central apnea is when your body "forgets" to breathe. In fact there are a LOT of safeguards built into the process. Often people with brain injuries continue to breathe. It is one of the basic mechanisms built into our bodies.

With central sleep apnea, many different things can interfere with this process of blowing off CO2 (and coincidentally taking in O2). These can include heart problems. It can be problems with the central nervous system. It can also be issues with the receptors that sense the PH of our blood. From what I've read, researchers think that just as reduced pressure (such as living at altitude) can interfere with the proper function of these receptors, so increased pressure can do the same.

Anything that interferes as our body tries to measure the PH of the blood causes our body to undershoot during the breathing cycle. That is, it does not breathe deeply enough, the CO2 builds up until the body takes corrective action. This generally causes an arousal from deeper levels of sleep to lighter levels. And our body then tends to overshoot. We breathe faster, we blow off more CO2 than we should. And suddenly we don't have enough CO2, and our urge to breathe falls. And the cycle starts all over.

Seeing this repeating cycle researchers wondered if it might be able to break the cycle could be broken if - during the undershoot phase - breathing could be sustained. They developed Adaptive Servo-Ventilation (ASV) as a therapy. When these machines sense that you will undershoot your normal breathing, it steps into the picture and by increasing the pressure helps you maintain your breathing. It helps with the CO2/O2 exchange. For that breath, it acts as a ventilator. And by doing that, it does break the cycle. Even though you did not breathe enough, the machine stepped into the picture to help out.

Bons, this means that just the increase in pressure can trigger central sleep apnea. This is known as Complex Sleep Apnea Syndrome (often abbreviated to CompSAS). Heart issues are the most common trigger of periodic breathing and central sleep apnea. Neurological issues are probably the rarest cause of central sleep apnea.

CrazyDreamGirl, doctors normally try to see if a slightly lower pressure will help resolve the central sleep apnea. Sometimes that's all it takes. You have a low enough AHI value without all the central apneas. Sometimes they will try supplimental oxygen, which can also help reduce the central apneas. If those steps fail, they wil often try another sleep study with an ASV unit. Those units are quite expensive (not hundreds, but thousands of dollars). Generally doctors attempt to apply the least costly / least intense course of treatment. You don't need stitches if a baind aid will do. You don't need antibiotics if it is a virus. And you don't need an ASV unit if lower pressure (or even an APAP unit) will solve the issue.

Hope all that makes sense.

[CrazyDreamGirl]

Hi John,

Thanks so much for all the info - and the reassurance! I read it once and am going to have to read it a few more times to really absorb it. I don't know if it's too many years of bad sleep or just hormones or what, but lately I feel less intelligent than I used to me - too much brain fog. I hope to improve.

Thanks again!

Julia (aka CrazyDreamGirl)

[Muse-Inc]

Another thing to remember, as we adjust to CPAP therapy (all that equipment) everything starts to change! Some have posted that the number of centrals was reduced. You'll always read us posting warnings about increasing pressure as that can induce centrals. Some people's titration study shows the pressure(s) where centrals occurred -- good reason to get a copy of your study.

[kempo]

Brain fog will clear up and memory will improve with time on the machine. It has with me and I'll bet it will with you too. When it does your fears will disappear. Good luck.