CSA "lazy brain"

[prufrock]

Nine years ago my doctor said I looked like I was in the wrong building because I looked so different than his other patients. I am an athlete. I have CSA or in his words -"lazy brain". Assured that CPAP would work, I started treatment with tremendous confidence. However, every mask under every pressure and humidity including BIPAP had the same result - waking immediately with chipmunk cheeks. I tried all masks, chin straps and inner mouth appliances with no success. I was encouraged to stick it out - that I would eventually adapt. However, every morning after trying to adapt, I would be an absolute wreck the next day, dramatically worse than if I were untreated. Friends, family and colleagues demanded that I stop torturing myself, so I stopped after 1 month. I was referred to a surgeon who claimed a 99% success rate for UPPP. I had it done along with modifications to my lower lip. No change. I was advised that the next step would be a tracheostomy. I ceased treatment.

I have never done drugs. Cardiologists say that my high 30s low 40s heart rate is normal for my being an athlete. I am naturally relaxed even when exerting myself. I discovered that if I did not allow my body to reach a state of extreme sleepiness or exhaustion by taking naps as needed, that my night time sleep would improve. The sleepier I am, the worse the CSA.

I just read today that CSA is not fully understood and that research continues. I typed in Central Sleep Apnea in this forum's search and could not find much.

Has treatment for CSA changed much in the last 9 years? Anyone in this forum have CSA?

[Julie]

What machine were/are you using? Those designed just for OSA won't work on CSA.(and bipap won't either).

[prufrock]

I am still naturally forgetful and absentminded and it was 9 years ago. I tried three different machines - I do not recall them other than CPAP and BIPAP.

[Julie]

When's the last time you had a sleep study? Technology has changed and there are more options for everyone, but to get an appropriate machine (one not meant for plain OSA) you'd likely have to do a new study now, to get a definitive diagnosis and allow you to get a new prescription (which you'll need to get a machine). I hope you're with a different doctor now as well, or at least get a referral to a neurologist who's known to be interested in sleep disorders. Someone else here with more experience in CSA should be along here very soon too to give you more specifics.

PS - Should be call you J. Alfred ? It would be more helpful (especially if someone wanted to PM you) if you register as a member.

[JDS74]

Sounds as if you need a current sleep study with the emphasis on titrating for central sleep apnea.
The type of machine for CSA patients is the ASV (Auto Servo Ventilator) machine. When you have a central event, the machine acts like a ventilator and breathes for you until you resume breathing on your own.

Where did the central apnea diagnosis come from? With that diagnosis, UPPP is and will be ineffective. It merely (tries to) open the airway. In a central event, the airway is open anyway. You just aren't breathing - its not as if your airway is obstructed and you can't. Similarly, a tracheostomy will also be infective - same reason.

Registering will be helpful in getting more information.
In the meantime, here are a couple of things to do:

Get a copy of any sleep studies you had in the past.
There should be useful information on the degree of sleep apnea and the degree of central sleep apnea in the reports.

Read on "Chipmunk Cheeks" on this forum. Its a common problem and there is significant discussion here.

Do you know if you are able to breathe through your nose at night? If not, a solution to the chipmunk cheeks comes in the form of the Oracle 2 mask which has headgear that effectively holds in your cheeks and helps with the problem.

[prufrock]

I memorized "Lovesong" except for the Latin prelude from Dante's Inferno and have performed it by heart many times. I needed a guest name and that was the first name that popped into my head.

I have had 6 sleep studies, the last 2 nine years ago at Stanford before and after surgery. I do not remember the stats and I never understood them anyway.

I have it under control if I never physically exhaust myself or get to the point where I am dreadfully sleepy, which brings it on with a vengeance. However, I have lapses where I play several sets of singles or stay up late a few nights in a row. Driving or flying long distances also triggers it. I wake up repeatedly, gasping for air and often screaming from dreams having to do with drowning or suffocating. Just as often I have euphoric dreams in which I can fly if I hold my breath and be absolutely still which causes me to be lighter than air. In my first sleep study all the patients slept in the same room and I woke everyone up screaming and gasping for air- I had a nightmare that a doctor in a police uniform had wires all over me and was choking me.

Lately, my discipline has been lacking. Nonetheless, I think for me discipline is the answer. When I stray - I pay. Rinsing my nose and a glass of wine before bed helps.

My brother insists that there must have been advances in the last 9 years and that I should get another sleep study. I think I would pass it if I were well rested the week before.

I have heard that there are treatments for CSA other than breathing apparatus. Anyone have experience with this?

[Julie]

Your dreams are trying to tell you something (serious), and you're trying to pretend it doesn't matter (much), but things will catch up with you one day when you're not looking. And please don't drink anywhere near bedtime, it sedates you and that's the last thing you need. You're playing Russian roulette with your life... is it really worth so little?

[jencat824]

Prufrock,

Seriously, Julie isn't kidding, CSA KILLS! When you are asleep, you need oxygen. If you stop breathing xxx times per hour, you are starving your vital organs of necessary oxygen. This can lead to heart disease, high blood pressure, heart attack, stroke, diabetes, to name a few of the really bad things that can happen.

Your brother is right, many advances have been made in 9 years. Machines are smarter & easier to tolerate. There are lots of new masks on the market that are much more comfortable than back then. I've been on CPAP 14 years & have seen many improvements. You owe it to your loved ones to try again.

First, find a good neurologist that specializes in sleep medicine. He will get a new sleep study, these have improved too, there are even home sleep studies. I think these are usually for garden variety OSA so you will probably have to go to a lab, but these are much improved too. Do some reading here about things that concern you, post questions & we will try to help. Obviously your brother is concerned or he wouldn't have been encouraging you to get help.

Your life is worth saving. The method of 'management' you are using is not safe. Waking up gasping & screaming is not normal. Trying to not 'get too tired' won't prevent the events from happening, you just probably aren't aware of them. Please get help. I don't know you, but I would like to. I hope you choose to get help. I hope you register & let the members of this forum help you with your journey.

Jen

[prufrock]

I am such a ding-a-ling. I just noticed that this is CPAP talk . Before my scheduled sleep study I want to get feedback from someone else with CSA and if treatments exist other than CPAP, like discipline. So far no one had addressed this. CPAP is the focus here.

Did I give the impression that I do not care about my life? I am sorry. Yearly check-ups reflect superb physical health. I experience a very happy, fulfilling, and adventurous life.

Dreams are a vital key. That I am advised in this forum to listen to them is telling. In my first sleep study I have a nightmare that a doctor in a police uniform is choking me while I am covered in mad scientist wires. I wake up gasping and screaming and wake every patient in the sleep study room. How much more symbolic can that be?

Things have certainly changed. My first sleep doctors had never heard of my puffing cheeks (now recognized as "chipmunk cheeks") and patients now get their own sleep room. The UPPP I had is no longer recognized as being effective. Some things have not changed. There is a lot of money in prescribing machines and operations rather than prescribing lifestyle changes and discipline . First and foremost, I must be educated and listen to myself.

I am having a sleep study. I am certain that if I have the discipline to not over exert my body before, that the sleep study will yield exemplary results.

It appears that no one in this forum has CSA or is using non mechanical treatments. This is CPAP talk- I am in the wrong web site. Thank you for your concern and advice.

[SleepyToo2]

Prufrock, every forum needs a name. This one just happens to be called cpaptalk. CSA is indeed discussed here a lot. Search on Google for centrals and apnea and ASV. You usually have to "fail" on cpap and bipap before you can get an ASV, which is probably what you need. Given your history of nightmares, night terrors, and plain old denial, I do not see any way that you can beat the problems you are having. Short of getting an ASV. Or death. It's that serious. Do another sleep study then come back here for advice on how to optimize your therapy.

[Julie]

"Discipline" is not a therapy for CSA, never was and I don't see how it can be. Your brain is not signaling your system to breathe for some obscure (as yet to scientists) reason and discipline has nothing to do with it. Good luck with your methods.

[Overflow]

prufrock if you're an athlete and have a healthy BF% then unlike many xpap users you already have a body that cannot be improved much by lifestyle choices. If someone has OSA and are overweight or obese, such lifestyle changes can be of huge benefit and can even eliminate the need for a machine at all.

The best advice is of course to seek medical help and be as driven about finding a good therapy as you can be. There are many users in this forum who will advocate not using machines as long as that has been indicated by scientific evidence and/or a professional that has the facts to hand and the experience to advise on the appropriate action.

[sleeplessinaz]

Ditto what Jencat824 said! Please get help - this stuff can kill you if left untreated.

[kteague]

I would think very disciplined persons (such as athletes) would probably have a hard time accepting that some things they they can't control or force into submission. They are used to their body doing what they tell it to do. When we are asleep, that self control goes out the window. Now, if you see you have worse nights when you are exhausted, that certainly is a factor you can do something about.

I do hope your folllow through with getting a current sleep study gives you some clarity as to how to best handle your situation. Do get a copy of any reports so you can see in black and what exactly what you are dealing with. Right now you are talking about having both CSA and OSA, and maybe you do have both. But I get the idea there is a lack of clarity on exactly what your specifics are. Decisions this important are best made on cold hard facts. If you have any questions after the sleep study, do come back so we can continue this conversation.

Not trying to "pile on" but just saying I knew a family with a genetic predisposition to CSA. My very athletic and otherwise healthy coworker lost her adult daughter and a niece, who both died in their sleep. And then she died in her sleep. "Lazy brain" might help someone understand CSA a bit better, but sounds so very casual for such a potentially life threatening problem.

[4betterO2]

I have (mild) CSA caused by PAPing, a situation so common that for about one year, it was part of the circumstantial description of causes of ASV machine use on the Philips Respironics website (they took it down since, but you can still find it in other sites). I got it from using a bi-PAP machine. I expect there are a lot of straight-CPAP and Bi-PAP users out there who have developed some degree of it but don't know it. In your case the history of your CSA seems quite different and needs expert neurologic examination. But whatever the origin, the advice everyone has given you is both true and timely: you need to use an ASV machine, urgently.

Did you know that even an primary care physician can prescribe an ASV? It will be accepted by the medical equipment sellers, though this will not be sufficient for it to be covered by insurance, which requires a sleep study and a board-certified sleep doctor. So depending on your financial situation and the availability of sleep specialization healthcare where you live, you may consider that route.
Since the primary care physician cannot write a pressure-settings Rx without a titration sleep study, he/she could use the "fully automatic" Rx for pressure settings, since the machine is able to auto-titrate itself. (At least the Philips Respironics ASV does). You might be able to buy one used now that it has at least 2 models in its history (950 and 960 I believe). The Resmed is quite cheaper, but I don't know the model # that has ASV functionality.

This forum has been of unmeasurable benefit to users who need to tweak their machines themselves, you are indeed in the right place here, plus providing such great moral support.
Personally, once you get your machine I would advise to use it on full automatic for 1 month if it is PR 050/960, because it learns your way of breathing and needs time to do that, but if you get sudden shoots of unbearable high pressure, then I would cap the max pressure. If you are interested, I would be glad to get into more details and give you my opinion of what specific settings would be advisable for your machine past the beginning period, etc. Good luck and hoping you will join the forum and get the help you need