What the Hell?

idamtnboy · Post by **idamtnboy** » Sun Nov 17, 2013 12:58 am

Queen of Darkness wrote:So, I was excited when my doctor told me that a cpap would help me. And deeply disappointed to discover it was a fail.

In my mind you are the victim of hype. Who all are responsible for building up your expectations to a tremendously high degree, whether it was your doctor, we on the board with so many positive reassurances, or your own desperate reach for something, anything, to solve your problem, is impossible to say. But, and it is a big BUT, it does not matter who or why your expectations were set so high. The reality is you did not reach them by any stretch of the imagination in the short time you thought you would. And now you are crushed, and angry. In other words, acting quite normally. So let's start from there.

How many nights did you really try to use the CPAP? I'll respond after I see your answer.

kaiasgram · Post by **kaiasgram** » Sun Nov 17, 2013 1:01 am

Hi Queen -- We're the same age. I started CPAP last year when I was diagnosed. I will tell you honestly that while I've been using the machine for 18 months now, I do not sleep better or feel better than when I started. In that sense I would call my experience with CPAP a failure. There are many days -- and nights -- when I feel worse.

For what it's worth, the reason I continue with PAP therapy is because I saw this:

My home sleep study with oxygen desaturations frequent enough to put me in the severe category for part of the night. I was having trouble falling asleep the first part of the night, light sleep on and off. Where you see the red line is when I took some xanax and fell asleep until the morning.

According to my sleep data and periodic checking with an oximeter I am now breathing while asleep and my oxygen levels are staying normal throughout the night. So, I'm a mixed case: CPAP is a success in that I'm no longer starving my brain of oxygen and flooding my system with stress hormones all night. It's a "failure" as far as my energy and overall sleep quality go. My reason for staying with CPAP -- I figure whatever my problem with sleep is now, it surely will get worse if I don't treat the sleep apnea. That's my concern for you too.

Whatever you end up doing, I wish you well. But I hope you'll stick around and let us help you try to make a go of CPAP. If you register on the forum you can private message any of us who have private messaging enabled -- most of us do make ourselves available.

zoocrewphoto · Post by **zoocrewphoto** » Sun Nov 17, 2013 1:48 am

Queen of Darkness wrote:Running the cpap as a desk fan ( in order to register usage on the monitoring device) was the best idea anybody has come up with.

The machine won't record compliance if it can't detect breathing. So, just running it won't make compliance. If you truly want to get rid of the machine, simply fail the compliance and let the DME take the machine back. You will be out 2 months rental and be done with it. This is not good medical advice at all, horrible actually. But it would save you the hassle of selling the machine, failing compliance, having the DME demand the machine back, and then get stuck with the full bill since insurance only pays their share past the compliance period if you pass the compliance. You would still be far better off starting over, telling us exactly what problems you are experiencing, and letting us help you. Most people need some help with finding the right mask, fitting it well, getting the pressure settings to be comfortable (the DMEs often encourage ramp and too low a starting pressure). There are lots of things that people can help you with, even the insomnia - several people here have struggled with that too.

If you take some time to really read some of the posts, especially the group of subjects at the top, you will find a lot of information, and you will find that a lot of people have struggled with treatment. Most doctors and equipment providers have never used a cpap machine, so they really don't have a clue how to adjust them, how to actually fit a mask well, etc. Many f them don't realize that their favorite advice is often the exact opposite of what we need. That ramp feature they promote actually bothers most people. They often believe that starting at a low pressure will be more comfortable, but it is often suffocating to people and causes them to quit. It isn't normal for a new person to feel like they are suffocating and RAISE the pressure, but that is usually the best solution.

Also, keep in mind that sleep deprivation is only part of sleep apnea. It is also about oxygen deprivation. I used to think I slept pretty well. I felt like I was asleep most of the night with a few noticeable wake ups. I didn't realize that I was waking up 79 times an hour since I only remembered a few per night. What I also didn't realize was that my oxygen was going down, and my body was releasing adrenaline all night, causing high blood pressure and stress to my heart. It was putting me at a high risk of stroke, at age 39. I didn't know until I started treatment that all those bathroom trips were caused by the adrenaline. And my morning headaches were caused by the oxygen deprivation. Lots of other symptoms too that I didn't know were related.

And something else that is really important. Sleep medications may help you sleep, but they do 2 thing that are very dangerous for people with untreated sleep apnea. One is that they usually make sleep apnea worse. Your body is more relaxed, making the apneas/hypopneas worse and more frequent. With cpap treatment, this can be compensated for. The other problem is that the sleep medication makes it harder for your brain to wake you up to stop the apnea/hypopnea, so the events go longer, causing the events to last longer, which will make the oxygen deprivation even worse.

I used to have the worst headaches on days after my weekend events that I go to. I thought i was just wiped out after a long weekend. I would come home Sunday night and go to bed very early, then sleep in really late. I would feel like I slept well and long, but I would wake up with a nasty headache and then spend the rest of the day in bed. What was really happening was that I was spending twice as long having apnea events, so I was starving myself of oxygen even more than normal, causing the horrendous headache. Then,feeling bad, I would stay in bed and continue the oxygen deprivation. Now that I use a cpap machine, I don't get those headaches anymore.

zoocrewphoto · Post by **zoocrewphoto** » Sun Nov 17, 2013 1:54 am

Queen of Darkness wrote:Yeah, that's right. I tried it. It didn't work. I cut my losses, and I am looking for a better solution.

Everybody may not like what I posted, but that's ok.

Over a thousand people have read my post. If I helped, encouraged, or properly warned even one of them, it was well worth checking in.

Insomnia, for a working person, is terrible. Lying in bed for hours, watching the digital numbers change on the alarm clock, knowing that you will be so tired tomorrow that you might fall asleep on your desk, is a lonely feeling

But Cpap is not for everybody. And if your problem is insomnia, Cpap won't help you.

Don't sign on the line if you have any reservations.

Every time somebody reads new posts in the topic, it counts as a new view. Those aren't 1000 different people. Also any newbie reading this topic will see from the responses that cpap really is the best treatment for sleep apnea, and it is very important.

You are correct that cpap does not cure insomnia. That isn't what is designed to treat. The problem is that you have sleep apnea AND insomnia. You need to treat both. Treating the insomnia will not treat sleep apnea, just as treating the sleep apnea will not treat insomnia. You have to work on both if you want to regain your health.

zoocrewphoto · Post by **zoocrewphoto** » Sun Nov 17, 2013 2:03 am

jbloodwo wrote:Having never spent a night reading tell I was cross eyed with floods of tears flowing from my eyes I know nothing about insomnia and not once have I ever wanted to throw a clock radio across a room at 3 am knowing I need to get up in 3 hours. I have had dr. Offer "sleep aids" and I refused them. Call me totally crazy but I don't want to take something that might mask a deeper condition. We forgot how powerfully the brain is. I can't tell you how may times I have had dreams where I am holding something hot and I wake up with a burning pain in my fingertips. All that to say this. What if there is a deep tie with acute Insomnia and OSA. Is it a big stretch to think our brains might try to force us to stay awake so we don't have really bad apnea events an a big dip in o2 sat. And for mu sleep study it did take 60-90 mnn to get to sleep.

It ha been suggested that many people who stay up late are actually avoiding sleep because deep down, they know that sleep is bad for them due to the lack of oxygen. At first, I thought this was bunk as I am a severe night owl, and I have been this way since I was 17. But then I realize one night that I was putting off going to bed until I was super tired because I was expecting a bad night (I can't remember why, maybe a cold, or cough, or something). And I realized that this may have started out as a protective mechanism to get the bare minimum of sleep and the least amount of events. And over time, it became normal for me.

It also makes sense that I would usually feel better after only 5 hours of sleep late when I liked it, rather than 8 hours earlier in the night. I assumed it was timing, but in reality, 5 hours had fewer oxygen problems than 8 hours, so less damage.

Queen of Darkness · Post by **Queen of Darkness** » Sun Nov 17, 2013 3:07 am

Thanks for sharing your experiences. That is interesting and good reading.

Especially interesting is the theory that sleep aids make apnea worse. And somebody said, "you have two problems, apnea and insomnia.". And somebody else said, "maybe your body doesn't want to go to sleep because deep down you are afraid of the apnea."

I may try using the cpap with a surgical mask, with the tube duct taped in place. That way, if the machine stops, I can still breathe. I am scared to put the provided mask back on, as my first experience really frightened me. The machine malfunctioned. I felt like I was being smothered

Appliances often malfunction in my house. Things seem to switch on and off by themselves. The tv will turn itself on in the middle of the night. I think the wiring may need to be checked.

My husband died a few years ago, and my kids think his spirit is tampering with things. Now I can say that is silly and I don't believe it, but in the darkest hours of night, I have my doubts. Silly, perhaps, but enough of a concern that I would not be able to go to sleep with a mask tightly fitted around my face attached to a machine that malfunctioned. My sense of self-preservation will not allow for it.

I slept just fine when my husband was alive, except when I had pms. Right after he died, both menopause and insomnia hit very suddenly. Which makes me think that much of my difficulty is hormone-related.

I have been researching natural sleep aids. Melatonin, chamomile tea.

I try not to take sleep aids on the weekend. I just noticed it is nearly 3:00 in the morning. Maybe it is time.

Thank you for giving me some things to consider. Now, what are we all doing up so late?

Lazer1234 · Post by **Lazer1234** » Sun Nov 17, 2013 3:51 am

I thought at the beginning of this thread that you were either crazy or trying to fool us, but your last post shows that it is not. You have severe apnea and begin to understand how it affects you. I think we've almost all had problems with the feeling of being suffocated. There may be problems with the pressure setting or wrong mask or difficulties with accepting everything. I myself have been at home in Sweden to help a woman for a year cut off his mask every night. Now she has changed mask and the last two weeks, she slept all night with cpap. She has not felt so good in many years that she has now made the last two weeks. So I start to believe that you will be able to fix this, although it will not be easy.

SleepyBobR · Post by **SleepyBobR** » Sun Nov 17, 2013 7:08 am

Seems that your insomnia is what is bothering you most and CPAP therapy is not meant to treat insomnia. It treats sleep apnea. In fact, CPAP sometimes aggravates insomnia in the short term. To the extent your insomnia is caused by your sleep apnea, CPAP therapy may help you get to sleep once the apnea is controlled but it can take a while. Some, like RobySue continue to fight insomnia even with their OSA properly managed. As someone earlier suggested, you need to deal with these problems separately. Also, regarding your intention to rig up a surgical mask using duct tape (assuming you are actually serious about this and not just messing with us), you need to understand that a CPAP mask is designed to seal properly against your face to prevent leaks but also has vents which allow for a controlled leak rate to prevent re-breathing. If your surgical mask doesn't seal properly it can't possibly work. If it does (with lots of duct tape?), and isn't vented properly, you could asphyxiate, especially if you load up on Xanax.

robysue · Post by **robysue** » Sun Nov 17, 2013 8:11 am

Queen of Darkness wrote: Appliances often malfunction in my house. Things seem to switch on and off by themselves. The tv will turn itself on in the middle of the night. I think the wiring may need to be checked.

Get the wiring checked. Seriously. If you often have problems with things switching on and off by themselves, you need to get the wiring checked out. There's a potential serious fire hazard if you've got bad wiring and multiple appliances plugged in 24 hours a day like most of us have.

I slept just fine when my husband was alive, except when I had pms. Right after he died, both menopause and insomnia hit very suddenly. Which makes me think that much of my difficulty is hormone-related.

The hormone changes during menopause are thought to be a factor in explaining why many women with OSA seem to develop the sleep apnea during or shortly after going through menopause.

I have been researching natural sleep aids. Melatonin, chamomile tea.

Add you your list of natural sleep aids: Sleep Hygiene and Cognitive Behavior Therapy for Insomnia. But note: A major cause of serious, chronic insomnia is untreated OSA. You will need to work on both CPAP adjustment issues and insomnia at the same time. Will it be easy? No. Will it eventually bring both your sleep problems under control? Yes, but you'll probably always need to be more vigilant about maintaining quality sleep hygiene than most people.

Now, what are we all doing up so late?

You were chatting with some members of the CPAP&Insomnia club. There are always a few around ....

chunkyfrog · Post by **chunkyfrog** » Sun Nov 17, 2013 10:05 am

I was on cpap for four months before I was allowed a mask that didn't HURT.
I didn't feel noticeably energized in the morning for longer still, about 6 or 7 months.
---but at least I was no longer waking up with a ripping headache. That is what kept me going.

DoriC · Post by **DoriC** » Sun Nov 17, 2013 10:44 am

zoocrewphoto wrote:
Queen of Darkness wrote:Running the cpap as a desk fan ( in order to register usage on the monitoring device) was the best idea anybody has come up with.
Great post, Zoo, should be required reading! Thanks!

The machine won't record compliance if it can't detect breathing. So, just running it won't make compliance. If you truly want to get rid of the machine, simply fail the compliance and let the DME take the machine back. You will be out 2 months rental and be done with it. This is not good medical advice at all, horrible actually. But it would save you the hassle of selling the machine, failing compliance, having the DME demand the machine back, and then get stuck with the full bill since insurance only pays their share past the compliance period if you pass the compliance. You would still be far better off starting over, telling us exactly what problems you are experiencing, and letting us help you. Most people need some help with finding the right mask, fitting it well, getting the pressure settings to be comfortable (the DMEs often encourage ramp and too low a starting pressure). There are lots of things that people can help you with, even the insomnia - several people here have struggled with that too.

If you take some time to really read some of the posts, especially the group of subjects at the top, you will find a lot of information, and you will find that a lot of people have struggled with treatment. Most doctors and equipment providers have never used a cpap machine, so they really don't have a clue how to adjust them, how to actually fit a mask well, etc. Many f them don't realize that their favorite advice is often the exact opposite of what we need. That ramp feature they promote actually bothers most people. They often believe that starting at a low pressure will be more comfortable, but it is often suffocating to people and causes them to quit. It isn't normal for a new person to feel like they are suffocating and RAISE the pressure, but that is usually the best solution.

Also, keep in mind that sleep deprivation is only part of sleep apnea. It is also about oxygen deprivation. I used to think I slept pretty well. I felt like I was asleep most of the night with a few noticeable wake ups. I didn't realize that I was waking up 79 times an hour since I only remembered a few per night. What I also didn't realize was that my oxygen was going down, and my body was releasing adrenaline all night, causing high blood pressure and stress to my heart. It was putting me at a high risk of stroke, at age 39. I didn't know until I started treatment that all those bathroom trips were caused by the adrenaline. And my morning headaches were caused by the oxygen deprivation. Lots of other symptoms too that I didn't know were related.

And something else that is really important. Sleep medications may help you sleep, but they do 2 thing that are very dangerous for people with untreated sleep apnea. One is that they usually make sleep apnea worse. Your body is more relaxed, making the apneas/hypopneas worse and more frequent. With cpap treatment, this can be compensated for. The other problem is that the sleep medication makes it harder for your brain to wake you up to stop the apnea/hypopnea, so the events go longer, causing the events to last longer, which will make the oxygen deprivation even worse.

I used to have the worst headaches on days after my weekend events that I go to. I thought i was just wiped out after a long weekend. I would come home Sunday night and go to bed very early, then sleep in really late. I would feel like I slept well and long, but I would wake up with a nasty headache and then spend the rest of the day in bed. What was really happening was that I was spending twice as long having apnea events, so I was starving myself of oxygen even more than normal, causing the horrendous headache. Then,feeling bad, I would stay in bed and continue the oxygen deprivation. Now that I use a cpap machine, I don't get those headaches anymore.

BlackSpinner · Post by **BlackSpinner** » Sun Nov 17, 2013 11:04 am

Queen of Darkness wrote:

So, I was excited when my doctor told me that a cpap would help me. And deeply disappointed to discover it was a fail.

I am checking this site and a couple of others trying to figure out what to do. One thing I never intended, and that was to piss everybody off. People here are so thin-skinned. But maybe they are all tired and miserable because their chosen course of treatment (cpap) doesn't work.

It is you who are the fail.
Cpap works wonderfully with very few side effects. I feel 10 years younger and look it too. My mental abilities soared and so did my emotional status.
You are showing classical sleep deprivation signs.

Over a thousand people have read my post. If I helped, encouraged, or properly warned even one of them, it was well worth checking in.

Yes all those people have seen what a drama queen you are and have read our responses. They have been warned not to do drugs irresponsibly and get help to use their cpap machine effectively and not to make a song and dance over one night of difficulty.

Madalot · Post by **Madalot** » Sun Nov 17, 2013 11:07 am

BlackSpinner wrote:
Queen of Darkness wrote:
Over a thousand people have read my post. If I helped, encouraged, or properly warned even one of them, it was well worth checking in.
Yes all those people have seen what a drama queen you are and have read our responses. They have been warned not to do drugs irresponsibly and get help to use their cpap machine effectively and not to make a song and dance over one night of difficulty.

For clarity sake, I wanted to be clear that the number is the number of VIEWS, not the number of PEOPLE. I have viewed this thread at least 10-12 times and each time moves the counter up once.

BlackSpinner · Post by **BlackSpinner** » Sun Nov 17, 2013 11:33 am

Madalot wrote:
For clarity sake, I wanted to be clear that the number is the number of VIEWS, not the number of PEOPLE. I have viewed this thread at least 10-12 times and each time moves the counter up once.

Yes I know that. But she was crowing over all these thousands of people being on her side. But you are right if everyone looked at this thread 10 times there are at most 100 people who have seen it.

49er · Post by **49er** » Sun Nov 17, 2013 11:41 am

BlackSpinner wrote:
Madalot wrote:
For clarity sake, I wanted to be clear that the number is the number of VIEWS, not the number of PEOPLE. I have viewed this thread at least 10-12 times and each time moves the counter up once.
Yes I know that. But she was crowing over all these thousands of people being on her side. But you are right if everyone looked at this thread 10 times there are at most 100 people who have seen it.

Black Spinner, at the risk of sounding like the evil moral arbiter that a few folks have accused me of being, I am going to respond to your post.

I can see why you felt the initial post was very off putting but since that time, Queen of Darkness seems to have rethought her positions and moved in our direction. To be honest, I would have given up way before you all were willing to but fortunately, you proved me wrong.

Why not give her another chance?

49er

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