Severe sleep apnea

Factual Questions
1

To start with – I am **not ** asking for medical advice. My wife is seeing a competent specialist, and will follow his directions. What I am interested in is further information, resource material, etc.

Having said that:

My wife was just diagnosed as having severe sleep apnea. Apparently she stops breathing an average of 94 times an hour during the night. No wonder she’s so sleepy during the day. The sleep specialist has started the paper work to get her a BiPap. What can we expect once she has it? Is there anything in addition that can help?

All information gratefully accepted.

2

[QUOTE=Rube E. Tewesday]
Is there anything in addition that can help?
[/QUOTE]
Some folks have trouble tolerating CPAP/BiPAP without a heated humidifier, and/or heater unit.

3

[QUOTE=Rube E. Tewesday]

My wife was just diagnosed as having severe sleep apnea. Apparently she stops breathing an average of 94 times an hour during the night. No wonder she’s so sleepy during the day. The sleep specialist has started the paper work to get her a BiPap. What can we expect once she has it? Is there anything in addition that can help?

All information gratefully accepted.
[/QUOTE]
I barely beat out your wife’s score with 96 episodes per hour. When I first was prescribed my CPAP (about five years ago IIRC,) I looked for a lot of the kinds of info you’re asking for but found very little. From my own anecdotal experience:

My CPAP took a while to get used to. It would have been easy for me to give up, but the girl I was living with at the time was very determined to get me to use it. She would frequently wait until I was asleep, and when I started to have an episode, she wake me up and put the mask on while I was too groggy to protest. I don’t know if this is the best way to handle your wife, but you need to really help her get used to this. Just in case your Doctor didn’t spell it out for you, let me explain what the Apnea is doing to her:

  • Your wife has high blood pressure, Doesn’t she? This is due to the Apnea and will go away when she is using the device regularly, as will:
  • Frequent upset stomach / acid refulx
  • weight gain
  • lack of energy
  • Has your wife ever woken up choking on bile and unable to breathe? If she hasn’t, she will unless she starts using the device.

But that’s just the tip of the iceberg. Apnea causes an amazing amount of stress on the heart. It’s estimated that many of the families who have ‘a history of heart disease’ don’t have any heart problems at all - what they have is a sleep Apnea problem that wears out the heart. This was the case with my family - my grandfather had six heart attacks before he finally died. We always thought his problem was stress, but he snored and choked worse than anyone you’ve ever heard. His problem was Apnea.

Here’s how it was explained to me: When an Apnea subject experiences an ‘episode’ they can go for as long as thirty seconds without breathing. At some point this kicks off an emergency subroutine in the subconscious, which pumps a huge amount of adrenaline into the bloodstream. The heart goes into panic mode, and the subject wakes up - just long enough to clear their airway and go back to sleep again. The whole process takes about 3-5 seconds, which is too short to register in conscious memory. That’s why your wife doesn’t remember any of this.

Putting the heart into panic mode 94 times an hour every night will wear out even the strongest heart prematurely . Apnea can kill by choking the subject in their sleep, or it can kill by shearing decades off their life by wearing out the heart. It’s badness, and you’re extremely lucky to have found out she has it now.

So here’s what you, her partner, will need to know:

  • When she puts on that mask, she will feel horribly ashamed of how she looks. You need to reassure her that you don’t care, and you want her to wear it. (This will never stop, by the way, so you will always need to reassure her for the rest of your lives. I still hate putting the thing on where anyone can see me.)
  • The mask will be uncomfortable. The trick is, don’t strap it solidly against the face like a gas mask - sleeping masks function more like balloons. Put it extremely gently against the face, then turn on the pressure. The air will fill the loose areas and tighten the mask next to the face with minimum pressure. It’s still uncomfortable at first, but you get used to it.
  • As mentioned, you may need a humidifier. I’m the opposite - I find a humidifier makes me congested and I wake up unable to use the mask. Try with and without, see what works.
  • If she’s got any congestion at all and can’t breathe through her nose, she won’t be able to use it. Stock up on nyquil and claritin for these occasions.
  • sometimes the air coming through the tubes is cold. She can warm it by pulling as much of the tubing as possible under the blanket and next to her body. (This sounds like a silly thing to mention, but believe me, this might end up being the most important. I almost gave up because the darn thing made my nose so cold.)

After a few months of use, she will start to realize she’s awake more, feels better and has more energy. Encourage her to use this energy to exercise and diet a bit - the candidates for surgery to permanently fix Apnea are the skinny people. (Losing weight might sound impossible to her right now, but she will find it a lot easier in a few months.)

That’s about all I can think of off the top of my head. Sorry for not having an official cite; I prefer hard data over anecdotes, but that’s all I got for you. Good luck!

4

Leviosaurus, that was great stuff, and I’m very grateful. The more I can find out, the happier I’ll be.

5

[QUOTE=Rube E. Tewesday]
Leviosaurus, that was great stuff, and I’m very grateful. The more I can find out, the happier I’ll be.
[/QUOTE]
No problem, glad to be of help. My email is in my profile if you think of any other questions. Keep in touch, let me know how it turns out!

6

Have you done a search on the SDMB itself yet? I’ve counted 22 threads on sleep apnea. This one seems like a good start.

7

[QUOTE=Maastricht]
Have you done a search on the SDMB itself yet? I’ve counted 22 threads on sleep apnea. This one seems like a good start.
[/QUOTE]

One of the many good ideas I’ve had after I’ve pushed the button. I will say, though, that no many how many times we cover a subject, a new thread often turns up new stuff.

8

Your wife will probably not like the first mask that’s provided. She may well not like the second, third or fourth masks either. Don’t give up - there are dozens of different masks availalbe, and it may take some trial and error (not to mention the assistance of whoever’s setting her up with the device) to find one that’s comfortable.

Sleeping with a hose connected to her head will take some getting used to as well. Hopefully, once she’s breathing properly at night, any tossing and turning that she may be doing now will be reduced.

You will need a bit of adjusting as well. First and most important is not to recoil in terror when you see her with the thing on. Second is that the machines aren’t entirely silent - not annoying noises, but if you’ve been used to a dead-silent bedroom, there will now be a low-level “white noise” of hissing and/or humming that you may be able to hear once the snoring and gasping have gone away.

9

I’ve worn my CPAP for about five years now, and although I hated it for a long time, now I’m actually uncomfortable sleeping without it. And I’ll testify that my blood pressure went down 40-50 points once I started using it, eliminating the need for BP medication.

10

My wife was diagnosed with sleep apnea about three years ago. She used to fall asleep in the living room by 8:00 each night. Now, she’s awake and alert until at least 11:00 most nights. She is able to do more and be more productive in the late afternoon and evening hours. Consequences of the apnea have been sleepiness/sleeplessness, high blood pressure (which did not go away), and the apnea may have contributed to the stillbirth of our son.

Now, I’ve been diagnosed with sleep apnea. I have only slept with the machine once (while it was being calibrated). I cannot tell you what a difference it made. I was awakened at 5:15AM by the sleep study guy. I drove home (about an hour and fifteen minutes), showered, fed the dogs, read my newspaper, watched a couple of football games, played with the kids, and generally lived for the entire day. My normal Sunday routine is get up, go to church (fighting sleep the whole time), come home, try to read the paper but end up falling asleep, eat lunch, try to watch a football game but end up falling asleep, eat dinner, watch TV, and go to bed. I am so excited about having actual full, alert days. I"m pissed about having to wear a mask, but I’m glad that I’ll be having better days.

11

[QUOTE=gotpasswords]
You will need a bit of adjusting as well. First and most important is not to recoil in terror when you see her with the thing on.
[/QUOTE]
Not to belabor the point, but this is a really big deal. The first time you put the mask on it feels humiliating. This is not the time to poke fun or tease her. You may want to think about what you’re going to say to her ahead of time - whatever will put her at ease and make her feel like there’s nothing wrong about this.

12

She may find that her mood is better and her concentration is sharper. If she can tolerate the mask, the results are pretty stunning.

13

This is all very useful and kind, and I am quite grateful.

14

Thanks you guys for your comments. I have sleep apnea (only one event of actually stopping breathing, but lots of hypopnea goodness) and have been putting off filling the mask prescription. I think I will call them now!

15

I have a CPAP machine. I stopped breathing 496 times in 6 hours during my test. Ever since I got my CPAP machine, I feel so much better. I used to wake up at all hours of the night gasping for air. I no longer have that problem. I had to get the full facial mask, because it was too much air blowing into my nostrils. Even though the air has a heated humidifier, it was still really cold and gave me headaches.

It will take her a while to get used to, maybe three or four nights. But I can’t say how great it’s been for me enough.

16

If the CPAP doesn’t work for you, ask about a dental appliance. Most doctors won’t recommend this the first time. (I suspect it’s because the CPAP costs a lot more and there is a lot of money to be made in this industry) but I know someone who had moderate sleep apnea and swears by it. The dental appliance is kind of like a retainer and it positions your mouth in such a way that it keeps your airway open.

It is much simpler, and doesn’t require electricity. In other words you won’t have to lug around a big machine when you travel, and you can go places that don’t won’t have an electrical outlet near your bed. Additionally, you don’t have to keep replacing expensive equipment. If I were a physician I’d try this firstfor appropriate cases.

17

[QUOTE=diggleblop]
I had to get the full facial mask, because it was too much air blowing into my nostrils.
[/QUOTE]
I had to switch to the full mask even in the sleep study, as the air whooshing when I opened my mouth was very distracting.

Man it’s hard to sleep in a sleep study.

18

[QUOTE=Rusalka]
If the CPAP doesn’t work for you, ask about a dental appliance. Most doctors won’t recommend this the first time. (I suspect it’s because the CPAP costs a lot more and there is a lot of money to be made in this industry) but I know someone who had moderate sleep apnea and swears by it. The dental appliance is kind of like a retainer and it positions your mouth in such a way that it keeps your airway open.

It is much simpler, and doesn’t require electricity. In other words you won’t have to lug around a big machine when you travel, and you can go places that don’t won’t have an electrical outlet near your bed. Additionally, you don’t have to keep replacing expensive equipment. If I were a physician I’d try this firstfor appropriate cases.
[/QUOTE]
Note that the dental appliance only works for moderate sleep apnea. A subject is considered to have treatable sleep apnea when they have as many as 10 episodes per hour. Of the people who have volunteered their numbers here (and in the linked thread) no one was experiencing less than 80 episodes per hour. This is severe sleep apnea and can only be treated with a CPAP or similar device. I suspect your friend was closer to 10.

I did ask my doctor about the dental device - he told me that with a case as severe as mine, I’d likely choke on it. There are good reasons for doctors not to prescribe those things.

19

[QUOTE=gotpasswords]
Your wife will probably not like the first mask that’s provided. She may well not like the second, third or fourth masks either…
[/QUOTE]

Gotpasswords is right about that. I hated my first mask. I probably would have gotten a better fit if I’d done one thing: gotten into my sleeping position while fitting. For me, at least, masks fit differently between upright and lying down positions. Knowing this, if I have to get fitted for another mask, I’ll lay on the dirty floor, if needed. Oh, and have them hook it up to a CPAP machine so you get the whole gestalt of the weight of the mask, the pull of the hose, and the fit of the headgear.

Prepare for the fitting by doing some research on the Internet to see the various kinds of masks out there. With the CPAP machine, I sleep with my mouth closed. The default “over the nose” mask always leaked at the bridge of my nose. It also leaked with the smallest move of my head, too. It gave me the raspberry! Don’t get me started on how much of hair ended up in the headgear’s Velcro. When my first mask broke, I was determined to get a completely different style. The DME vendor had a variety of masks. I ended up with a “nasal pillow.” It is the perfect one for me. Fits nicely, minimal leakage, comfortable headgear. My sleep doctor didn’t mention them nor did I know to ask. Knowledge is power.

One other thing: make sure the first night she uses it, she’s not got anything important on her schedule the next day. My first night I didn’t get much sleep while getting used to everything. Constant readjusting of mask, orienting the hose, and everything else, I had no time to sleep! The second night and following, no problem.

As everyone else said, it doesn’t work overnight, no pun intended. I got my CPAP machine in mid-November. After a few days, I noticed a difference, but not much. It was mid-January before I felt energized, I could be productive from early morning until late at night.

My e-mail addy is in my profile; feel free to use it. I’d love to help motivate her to feel as good as I do.