Sleep Apnea - Help!

Factual Questions
1

I’m sort of miserable today. my husband (only 30) has been diagnosed with sleep apnea, and his doctor has proposed this horrific machine to be strapped to his head and nose EVERY SINGLE NIGHT for the rest of his life.

It keeps him breathing, and he doesn’t snore when it’s on, but because of this we can never go camping again, (unless we bring a generator), forget “spontaneous midnight fun”, and our dog is scared of him when he puts it on. It’s a HUGE machine (like a humidifier), loud, with a big mask and hose.

I find it crazy that there is no other way to treat sleep apnea besides strapping a young, otherwise healthy guy to a machine for the rest of his living days.

Has anyone heard of other “alternative medicine” methods for curing this? I assume he could lose some weight for one…but is there anything else?

jarbaby

2

I think you should get a second opinion. There are many different treatment options. A life-changing decision like this should not be made on the advise of one doctor alone.

3

Go to http://www.WebMD.com The front page is all about treatments for snoring.

4

There are conflicting opinions about this machine. I once spent a LONG time searching the net on sleep apnoea for a friend and if you do so, choosing, of course, which sources to trust more than others, you will find that some are delighted with it, and some manage without it. I wish I’d kept the stuff I found, but I’m afraid not. Oh, and although surgery has sometimes been used, there are also conflicting opinions as to its real worth.

I also gained the impression that it is one of those things with which one’s own doctor may not always be very familiar. Sorry not to have anything more solid for you, but if you keep looking, and perhaps talking to others who have this, you might find advice that could be useful in your husband’s case.

5

Thanks Alpha. I’m surprised at how these people talk about this mask as a God send and are so light hearted about some piece of machinery that you’re held prisoner to for the rest of time. When my husband puts it on he looks like he’s on life support. I started crying at the sight of him. It just drains the both of us, he looks like a cyborg.

We may try the surgery, but I’m still researching.

jarbaby

6

The doctors me on this too. I was miserable. Going to the sleep studies and the lung doctors (I was recovering from pneumonia when they decided to try this) and other doctors and finally being told I’d have to wear one of these things at a young age. When I did wear it I would inevitably wake up at 2AM and be wide awake or I would tear it off my face in my sleep. I can completely understand what you’re going through.

I’m not sure of your situation but if your husband’s apnea is brought on by his weight (i.e. it’s commonly found in overweight men) then losing weight may in fact help the situation.

The whole sordid story put me into a bad depression and I dropped almost 80 pounds. I found that my apnea problems (vivid dreams, painful morning headaches) disappeared. I live alone so I don’t know how bad I snore.

I know being told to lose weight is awful. I’m losing the battle with the weight I’ve lost now, but I will do anything in the world besides wearing one of those breathers again.

7

Also, for instance, try http://www.nlm.nih.gov/databases/freemedl.html

and

http://www.thelancet.com

(If you choose to include non-U.S.A. research, you would have to include the “apnoea” spelling.)

There also seem to be several message board support/advice groups for sufferers, but you will be able to choose which sources make sense to you. (That caveat is mainly because I didn’t think my friend was going to be impressed by advice to trust in “our lord Jesus Christ” for example.) Others seems to swear by losing weight and becoming a fiendlishly keen bicyclist.
And I’m sure I recall that at least one other poster here has this condition, mentioned some time last autumn, so this (name forgotten) poster might be able to help.

8

Please keep in mind that there is a differece between snoreing and sleep apnea. Sleep apnea can be life threating. There are operations that can correct it so you may to ask your doctor about them. However insurance dosen’t always cover them so that can be a problem.

9

He is overweight, but his doctor has also told him that he has a “low hanging palate”.

Fredge, I wish you good luck. Thanks for your story. I’m going to do some more research, and we’re working on changing our eating and exercise habits right now.

jarbaby

10

I also have sleep apnea and have been using a CPAP machine for over three years now. At first, I was also horrified at the appearance of this mask and having to wear it when I sleep for the rest of my life. But I got used to it and appreciate feeling awake during the day and not like I was in a fog all the time. It takes several months for the full effect of the machine to kick in so be patient.

I also had to switch to bifocals at about the same time. Now if I were given the choice of being able to either go back to regular glasses or not have to use the CPAP machine I would take the regular glasses in a heartbeat!

The noise my machine makes is similar to the sound of a central heating vent. If yours is louder you should look at other brands. My wife much prefers the sound of the CPAP machine to listening to me gasping for air during the night.

I purchased a couple car batteries and an inverter in case we lose power during the night. This may or may not help your camping situation.

I highly recommend a heated humidifier if he is not already using one. Before I got this my throat was getting dry all the time and I was having nosebleeds.

So, give the CPAP machine a chance and you’ll find that everything will work out fine. This really will make an improvement in the quality of life both of you.

11

Rufus, thanks for your advice. I fully admit that I’m being selfish in this regard. But face it, it’s horrible, it’s ugly, and it restricts the things we like to do! Last year we went on a road trip with six of our friends and shared a hotel suite. I don’t want to do that anymore and drag this f-ing machine with us, and neither does he, and I’m sure our friends wouldn’t want it! We’re active people, we go on trips, we visit friends in other states, this summer we were going to drive across country and camp the whole way. Mpw that’s out the window.

And, to be totally honest and superficial…I hate that I can’t cuddle with him any more. He lays perfectly still on his back, tubes and wires sticking out of him, pulse monitor strapped to his arm and fingertip, our dog won’t stay in the room anymore because she’s terrified, AND, he says it makes him too nervous to sleep, so he wakes up more tired than ever!

It doesn’t seem fair.

But thanks for the testimonial. I may just be a totally irrational child on this matter.

jarbaby

12

jarbaby,

I know where you’re coming from. I’m also 30 and I use a CPAP.

FWIW, Rufus is spot-on on this one. My apnea is due to a low hanging palate and a weight problem. Even when I lose the weight my anatomy ensures that the apnea improves only slightly if at all.

After a sleep study which showed that I was breathing approximately three times a minute during the night I was fitted with a CPAP and the improvement has been dramatic to say the least! Like Rufus, I’m willing to put up with the slight inconvenience in exchange for not spending most of the day lost in a fog, nodding off at my desk, and zoning out at inopportune times.

Some of the problems might be due to your husband’s getting used to the CPAP. If the hose from the unit is long enough your husband should be able to move around in bed. I sleep in a king size bed with the CPAP on the nightstand and have found that I can sleep on my side or back on the other side of the bed without trouble. If the mask is snug enough he should be able to do this without the mask leaking or coming off. Granted, I’m single so I don’t have to worry about strangling my sleeping partner (not that it’s a real problem :() but with some time, your husband should get used to the mask and machine.

As for the pulse monitor and such, maybe your husband can get rid of it. In my case, the machinery was used for the sleep study in the hospital and the first night at home to ensure that I was using the CPAP properly. After that I was on my own.

Surgery is an option and I looked into it. The problem is that in my case they would basically have reamed out my throat and taken out everything including my uvula. I didn’t want to go through life afraid of randomly choking on a glass of water and having to deal with the risk of silent apnea (blockage without the snoring caused by air making the throat structures vibrate) so my judgment was that the CPAP was right in my case.

My $.02 is to give it a chance and work with your doctor to see if it works. If it does, the benefits will heavily outweigh the problems.

Sorry for the length, but I guess it’s a side effect of a convert’s zeal. Let us know how you and your husband make out!

Regards,

Zappo

13

Has anyone tried the nightime dental appliances (like a retainer) that supposedly have a high success rate? I too have sleep apnea and some family members that also have it suggested that I try one of these first instead of going straight to a CPAP machine. I am only 27, not overweight, and have had sleep apnea since I was a teenager.

I think that sleep apnea treatment is a little odd in that doctors tend to suggest the most costly and invasive treatments first. They don’t do that with most other conditions.

14

For those not sure of what it is:

ap•nea "ap-ne-e\ noun [NL, fr. a- + -pnea] (ca. 1719)
1 : transient cessation of respiration
2 : asphyxia
ap•ne•ic -ne-ik\ adjective

©1996 Zane Publishing, Inc. and Merriam-Webster, Incorporated. All rights reserved.

15

Pulse monitor? Sleeping only on his back? I’m sure this was just the sleep study. The initial sleep study also messed me up. What happens during the sleep study is that the pressure is ramped up and down during the night to see what the setting needs to be. I slept horribly during the sleep study. Your husband should not need a pulse monitor and oxygen sensor once he is set up with his own unit. My mask is connected with six feet of tubing and I have no trouble sleeping on either side or my back. Of course I can’t sleep on my stomach but this was never very comfortable anyway. I don’t have any trouble cuddling with my wife. But sometimes it bothers her when the air from the mask blows on her neck.

I have also shared a cabin with other people. It works much better to explain the situation to the other people before hand rather that having them wonder what’s making the whoosing noise. One person was a doctor who was very interested in seeing a CPAP in action. An acquantance of mine who also uses a CPAP is a field service engineer and does NOT take his CPAP with him when he goes somewhere overnight; one or two nights without it is not a serious problem. Personally, I take mine with me when I travel.

I strongly suggest you give it a try for six months.

16

My CPAP is great. I know it’s a bit of a pain, but my apnea was making me into a zombie. I am 36, and for about three years I would sleep 10 hours or so an not feel rested at all when I woke up. I would fall asleep at my desk after lunch. Now I get six good hours of sleep and I feel wonderful. I am losing weight, and I don’t feel too tired to hit the gym. I do hope to get rid of the CPAP in six months or so, but if I can’t then so be it. It is better than any of the alternatives.

My wife likes that I don’t snore as bad and the machine is so quiet I can hear the A/C-heater fan kick on over it. It also isn’t very big, and you could hook up a car batteries and an inverter to it if you wanted to travel. It isn’t all that restrictive. If he doesn’t want to wear it, then take it off for a night. I don’t know about your husband, but I won’t die if I don’t have it. I just won’t sleep as well and I will probably snore loud enough to wake the neighbors, but for a couple of nights who cares. Also, my apnea is much worse if I have anything to drink, or am on pain meds or something. If he isn’t going to wear the CPAP, then skip any booze and heavy food that night and he’ll probably be fine.

I tried a mouth appliance, and it stayed in just long enough for my wife to get to sleep, and didn’t really help me sleep at all. I tried every over-the-counter snoring remedy and they were all crap. Read about homeopathic medicine and you will laugh your ass off. (“Water has memory. If you dilute something it makes it stronger.” It is really silly. It is medicine for people bad at math.) I really tried to lose the weight, but it is tough to increase your activity level when you are waking up 60 times per hour. When you get no REM sleep for a couple of years it does kind of slow you down.

My CPAP is made by a company called Apria, and I wear a mask over my nose. I know they make a slightly different model for people who sleep more face down that just has two tubes that go into the nose. The doctors at my HMO looked at every alternative before they put me on this thing, because it is very expensive and seen as long term. I have had surgery on my nose twice, first to correct a deviated septum, and then a combo turbinectomy and uvuloplasty. Neither helped much but my wife says they changed the pitch of my snoring a little. There are techniques being developed to harden and tighten the soft tissues by cooking them with microwaves or RF. I think they are a few years away, and I will wait until I see if it works and doesn’t cause other worse problems. I can’t see sticking my head in a microwave as better than the CPAP. If the CPAP you have is not a particularly good one, then ask for a better one or change HMO’s until you get a decent one.

My cat and kids were scared of the mask at first, but they got used to it, just like I did. If my wife wants to fool around, the mask does come off no trouble and I can fall asleep holding her, and then wake up later and put it back on. The fact that I am not dead to the world anymore makes the damn machine worth any trouble I have had to put up with so far. Really. Give it a fair chance. I don’t want to be on the CPAP forever, but until I drop another 40 lbs and keep it off I will use it.

17

Well, I guess I’m confused then, because my father and two of my aunts both have CPAPs and their doctors told them that “it’s just something they’ll have to live with” like a pacemaker or a wheelchair and that basically, there is no way to get off it unless you want to revert back to your previous snoring and sleep interruption level.

Rufus, I think you’re right, now that I think of it, the pulse monitor was for night one. I make sure to go to bed at least 40 minutes before him so I’m in REM before the noises start :slight_smile:

But I haven’t been able to sleep the night with him since then (four days ago).

I guess my depression was the doctors saying that this is the end of the line. Apnea is apnea and he’ll have it for life.

jarbaby

18

Apparently there are a lot of us on his board. My cpap machine is a Remstar, about five years old. It’s relatively quiet, I have a 12 foot hose. Compact enough for camping, it also runs directly off a 12 volt battery. The only consolation about hugging up to a cpap wearer is that you are assured that you will have them to cuddle up to for a long time to come. Untreated apnea kills.

19

I’m in the “God Send” catagory. Before it, I’d fall asleep at my desk daily. I’d nod off at red lights. I’d wake up in the middle of the nights heart pounding and sweating.

I didn’t ask the dr how long I’d have to wear it… I asked him How often do most people have to wear it. He said, usually forever. When I asked him why, he said it was because in a lot of cases people don’t change their lifestyle enough (i.e. lose weight) to make the difference.

I don’t want to wear mine forever. But if I don’t lose enough weight and I have to do that, then that’s fine. It’s still better than the way things were.

Enright3

20

Well, here’s the weird part. the sleep test diagnosed Apnea but he has NONE of these problems. He’s always been a relatively early riser, goes to the gym, sleeps like a ROCK, doesn’t nod off. I mean, he takes about a twenty minute nap after work but that’s it, and then he gets six and a half hours of sleep a night. We’re both actors, running around, rehearsals, performances, and he has a lot of energy.

Clearly, more investigation is needed. I’m glad all of you guys are enjoying success! I guess I should just suck it up.

jarbaby