Scary central apnea, what to do?

[mangosplums]

Hi,

I am really desperate and looking to see if anyone has experienced what I have and if they have any answers.

In the past few years when I go to sleep on my stomach or my side (which I've slept on my whole life), as I'm asleep and dreaming, I will suddenly experience the sensation that something is sitting on top of my chest, preventing me from breathing. I am a very lucid dreamer, and what happens is I'll be dreaming, I'll start to be unable to breathe, that sensation will incorporated into the dream. I will dream something is lying on my chest, or I'm underwater and drowning. I can feel myself losing oxygen and I try to to breathe, but I can't. It feels like I'm dying. I try as hard as I can to wake myself up, and after a very scary struggle, eventually I can wake myself up, but it feels like I come close to death each time. I now sleep on my back because it rarely happens on my back, but it's very hard to sleep on my back, and I don't get a good or deep sleep. This might only happen once a night, but it is so severe, and so horrible. It feels like if I hadn't consciously struggled to wake myself, I would have died. It feels like I go without oxygen for a very long time.

I have had a sleep study done, but it didn't happen during the sleep study. I was too scared to sleep on my stomach or side. Stupid, I know, I wasted that study. I then got another sleep study done, but I had trouble falling asleep and was only asleep for a few hours, and again it didn't happen.

I don't know what to do. I need to get this documented, because it is so severe, but I'm afraid the insurance company is not going cover another study. Has anyone else experienced this? I have never heard of anyone having the specific symptoms that I have. It is ruining my life, and makes going to sleep every night a scary experience.

Thank you to anyone who answers.

[OpalRose]

Before I was diagnosed with Sleep Apnea I experienced what is called "night terrors" or "sleep paralysis".

I would feel as if someone or something we're sitting on me and holding me down. I felt like I was awake, but couldn't talk or move. I really had to concentrate to get myself to come out of it.
It's very frightening, but not uncommon. When I think back, I had these as a child too.

It is a sleep disorder, but I didn't experience it during the two sleep studies I had either. I think that may be because you are in a very deep sleep when it happens, and who sleeps during their sleep study!

The good news is that once I was on Cpap therapy, those terrifying episodes stopped. I haven't had one in almost two years.

You don't say, but I'm assuming you have been diagnosed with sleep apnea. Do you know if your apnea is mild, moderate or severe and will you be getting a Cpap machine?

Find a good sleep doctor, and talk to him/her about these episodes and get on Cpap therapy sooner than later.

[icyura10]

Hi mangosplums,

I'm certainly not trying to minimize or otherwise marginalize your description of your condition.

I know there are numerous vein's of sleep disorders; some are in the pulmonary discipline, others are in neurology. I know there's an offshoot that is in the psychiatric discipline but I know very little about the sleep disorders in this area.

Considering you didn't present any supporting data demonstrating any reason for a traditional sleep disorder revolving around being treated with xPAP or dental appliances I'm curious what causes you to consider a sleep apnea disorder (not that it can't be mind you)..

Have you considered having a heart to heart with your primary physician where you put all your cards, face up on the table with them?

I'm not trying to suggest anything as I'm not qualified in any form of medicine, heck, I'm having a really hard trying to sort out my very own sticky wicket.

I know, when I talk with my primary, I'm forthright, upfront, direct and no holds bared honest with them. I want them to see / hear all the stuff in my head so they can either straighten me out or send me off to the appropriate medical support team.

[mangosplums]

Thanks for your reply. It might be what you describe, but I don't think so. I have experienced sleep paralysis before and it was very different to this. I could breathe fine, I just couldn't move my body. This is different, I'm unable to breathe, and I'm still dreaming.

During the first sleep study I got done, I had mild apnea. I will try cpap, maybe that will help. I am going to ask my doctor to get another study done, or to try a few nights at home with an oxygen monitor. I really want to catch this, because I really want to know what exactly is going on.

[PoolQ]

Yep I know exactly what you are talking about. At the bottom of a deep lake and knowing that you have to make it to the surface, fighting to get to where you can breathe. Got to the point where I dreaded going to bed. Not a good place in my life.

Sleep apnea Dx, with only 30 minutes of sleep the entire night. Doctor looked at the results and said "you did not sleep at all last night" my response was "welcome to my world". CPAP made it better, got the Rx on that little data-I made sure my Doctor understood that this was not going to be tolerable for much longer.

Then I got tested for COPD (told the Doctor that I felt like I was having apneas as soon as I laid down) and yep SA with COPD mixed in. Treated for that. Better still.

Some Fantastic advice from forum members right here and now I sleep mostly through the night and wake up fine. It took almost a year to finally get to really like sleeping with many adjustments. Including my Doctor saying I was on my own, nothing more he could do for me.

[mangosplums]

Yep I know exactly what you are talking about. At the bottom of a deep lake and knowing that you have to make it to the surface, fighting to get to where you can breathe. Got to the point where I dreaded going to bed. Not a good place in my life.

Sleep apnea Dx, with only 30 minutes of sleep the entire night. Doctor looked at the results and said "you did not sleep at all last night" my response was "welcome to my world". CPAP made it better, got the Rx on that little data-I made sure my Doctor understood that this was not going to be tolerable for much longer.

Then I got tested for COPD (told the Doctor that I felt like I was having apneas as soon as I laid down) and yep SA with COPD mixed in. Treated for that. Better still.

Some Fantastic advice from forum members right here and now I sleep mostly through the night and wake up fine. It took almost a year to finally get to really like sleeping with many adjustments. Including my Doctor saying I was on my own, nothing more he could do for me.

Thank you for responding. I'm glad you know what I'm talking about. I think most people aren't aware when this is happening to them, but I'm aware each time and I have to struggle to get myself to wake up. Were you diagnosed with obstructive apnea or central?

I know there are numerous vein's of sleep disorders; some are in the pulmonary discipline, others are in neurology. I know there's an offshoot that is in the psychiatric discipline but I know very little about the sleep disorders in this area.

Considering you didn't present any supporting data demonstrating any reason for a traditional sleep disorder revolving around being treated with xPAP or dental appliances I'm curious what causes you to consider a sleep apnea disorder (not that it can't be mind you)..

Have you considered having a heart to heart with your primary physician where you put all your cards, face up on the table with them?

I'm not trying to suggest anything as I'm not qualified in any form of medicine, heck, I'm having a really hard trying to sort out my very own sticky wicket.

I know, when I talk with my primary, I'm forthright, upfront, direct and no holds bared honest with them. I want them to see / hear all the stuff in my head so they can either straighten me out or send me off to the appropriate medical support team.

The reason I think it's an apnea disorder is because I stop breathing in my sleep. That's what's happening. I know my symptoms are atypical, most people are not aware when they are having apneas, so the way I describe it might sound strange. During my first sleep study I had mild sleep apnea, it was enough for insurance to try the cpap, which I'll do. I just wish this had happened during the sleep study, so I could have gotten some info on it. I think you are suggesting that this is something psychological going on and not a central apnea event. If that's the case, then it's very important to catch it in a study to show that it's not an apnea event, because the way I am experiencing it, it certainly feels like it is.

[PaulaO2]

With central apnea, there is no struggle to breathe. The brain doesn't think there is a need for it so you don't. You wouldn't be fighting against it. You'd just be laying there, calmly not breathing.

With obstructive apnea, there is a struggle. It is a whole body event. Legs and arms twitch, chest tries to move the diaphragm, all sorts of stuff are going on.

In terms of lucid dreaming, which is common in sleep apnea patients because we don't get into deep enough sleep, I can see how an OA event would be interpreted in our dreams.

Ask your physician for a prescription to rent an auto-titrating, data capable CPAP, aka APAP. Using this for 30 days would enable you to view the data and see if any events occur. You can also note the time when you wake up from one of these frightening events and then check the data to see if anything happened in that time frame.

[PoolQ]

mostly obstructive. The good news is that it has not happened even one more time since starting CPAP. The COPD thing only was noticed once I got the Apnea at least partially under control.

If your like me and can also tell when you stop breathing, you will have to play with the settings to find the ones that make you comfortable enough to sleep. Then again learning to trust the CPAP is going to be another challenge. it does work but letting go of wondering if you'll stop breathing again even with CPAP took me some focus and time.

Bookmarking this thread to follow your progress, hang in there.

[PaytonA]

Mangosplums,

Two of my favorites but that is beside the point. I have had the exact same symptoms except one happened while awake and on my back. I could breathe but it felt like someone had just big (and I mean big) weight on my chest. Reminded me of the commercial showing the elephant sitting on the ladies chest. The second time it happened, it began while I was sleeping at home. It did not seem like it was going to go away so I went to the emergency room. It continued at the emergency room while they treated me for heart problems. Nothing phased it and I started getting panicky. It got worse until they gave me some of Dr. Feelgood's best medication to calm one down. I was in the hospital for 2 days and they ran all sorts of tests on my heart including a cardiac stress test. Everything said the heart was not the problem. Finally, juist before I was released, I asked the resident cardiologist, if nothing was wrong with my heart what had caused all the pressure on my chest. During my stay they found that most of my electolytes were low. Potassium, calcium, and magnesium were all low. They feel that the very low magnesium allowed a severe cramp to occur in my chest/abdomen area.

Yes it was very scary to me but it turned out to be something fairly simple to deal with. In fact, I am still taking magnesium supplements to get my Mg up where it belongs. It would be a good idea to have your electrolytes checked. Someone will have to make sure that the lab is told to run magnesium because labs often do not run magnesium when they are just asked to run electrolytes.

I hope your problem turns out to be as simple to fix as mine was.

Best Regards,

PaytonA

[chill]

I had somewhat similar dreams before I started CPAP. I would dream that I was choking or could not breathe and awoke in a panic -- and unable to breathe! Sometimes it would takes tens of seconds before I could breathe properly again. It was terrifying, like I would never breathe again. I have obstructive, not central apnea. I have had a grand total of ZERO of those dreams since I started sleeping with CPAP. It sure does making going to sleep more pleasant.