I stop breathing while I'm sleeping
 

So I went for a sleep study. Short of it is when I enter REM sleep I stop breathing within a minute or two and wake up. In non REM I make it about 5 to 10. Usually after I've been in bed for about two hours I end up dizzy and have to sit up and shake it off. Sometimes (like last night) I just give up on sleep for the night. I take a few 1-2 hour naps during the day. Doc wants me fitted for a CPAP and he's calling it sleep apnea.

from wikipedia:

There are three forms of sleep apnea: central (CSA), obstructive (OSA), and complex or mixed sleep apnea (i.e., a combination of central and obstructive) constituting 0.4%, 84% and 15% of cases respectively.[4] In CSA, breathing is interrupted by a lack of respiratory effort; in OSA, breathing is interrupted by a physical block to airflow despite respiratory effort, and snoring is common. According to the National Institutes of Health, 12 million Americans have OSA.

CPAP is generally for OSA.

I think I have the more rare CSA type. Generally speaking I feel like my breathing has become a conscious thing that I do. I find myself having forgotten to breathe when I'm awake too and I'm pretty aware of my breathing during the day, when I'm falling asleep... and when I'm dizzy upon "waking"; if you want to call it waking that is.

When I do get into a good solid sleep I tend to have these weird dreams about being dizzy... dying... or hearing a really loud crash noise... or having double vision... then I wake up suddenly.


Multiple concussions, persistent post concussion syndrome. Last concussion was 2 years ago. Many other symptoms... but this one is really getting to point where it scares me.


New to the forum... Thoughts?


dontforgetusername

Welcome!

No matter what type of apnea you have a c-pap will help... it forces you to breathe... I would get one for sure if you are having these issues!

A C-Pap will not help with Central Sleep Apnea. If the diaphragm stops pulling breaths, a C-Pap will not push air into the lungs. A C-Pap is designed to push air into the nose and out the mouth to keep the tissue from closing up.

I have CSA. For me, it is caused by bad neck position. My guess is that when my head is tipper forward and/or to the left, my upper neck gets inflamed. This inflammation interrupts the breathing signal. My CSA is under control because I am very careful about my posture when sleeping or resting. I used to stop breathing when awake, too.

I sleep flat on my back with a pillow curled up around the sides of my head so my head will not roll off to the side.

I get some of my best sleep in a recliner chair.

Thanks for the welcome Sarah!


Some other things I'm looking at:

Adaptive Servo Ventilation ASV Machine

h*ttp://action.lung.org/site/DocServer/DePaso_Adapt_Servo_Ventitation_for_Central_Sleep_A pnea_S.pdf?docID=12186

Bilevel Positive Airway Pressure BiPAP Machine

h*ttp://en.wikipedia.org/wiki/Bilevel_positive_airway_pressure

I'm new here so I can't post links yet

I'm going to talk to my Neuro about those two when I see him on Friday to discuss this mouth mandibular thingy and the CPAP machine.


Altitude

I live at 1700 altitude, before this last concussion I was at about 800 altitide... I've heard living at higher altitudes can make my issue worse. I'm not sure how high 1700 is in the scheme of things though.

Oximeter with Alarm

Its tough to find one on amazon.com that I can keep on all night. But I was hoping I could find something that would give me an alarm whenever I dropped below 90%. All of the plug in oximeters are really expensive... like thousands. And the battery operated ones are for one time readings as far as I can tell.

Headphones with Breathing Sounds

I was thinking I could rig up some kind of MP3 headphone situation to give me something to match. Some kind of audio cue to make up for what my brain is failing to initialize.

Hugging My Wife

This is my current best situation... We spoon and I breath match what she's doing. It works well until one of us has to roll over. Then I go back to dizzy spells and feeling like I'm passing out rather than resting. She also really doesn't like me hanging on her all night because I'm heavy.

Sleeping with My Cat

Sometimes when I'm taking a nap My cat will sleep on my chest a few inches from my face and breathe on me. This tends to help. I'm not sure if its the purring or feeling her breath.

Inflating pillow?

I feel like if I had some kind of pillow that inflated rhythmically like hugging my wife it would help.

Meditation instead of sleep

For the most part this is what I do at night. I control my breath and try to get rest. Then I often fall asleep and feel like I'm going to pass out... rinse and repeat until dawn.

Finding a new doctor.

I'm in a pretty country rural situation and I'm driving an hour to the closest big city. Neurology there is really overwhelmed and I never seem to get more than 5-10 minutes with a doctor. They often schedule me out 6 months. I have issue that are scaring the hell out of me now. My last couple visits... 9 months ago I was prescribed some pills that didn't agree with me. 6 months ago I was scheduled for a sleep study. 3 months ago I got the sleep study. 2 months from now I was supposed to get the results... but I made an appointment with my primary care to see the results, she really didn't know how to interpret them. I've managed to get my post sleep study consultation bumped up to next Friday. My wife does most of my scheduling because I'm pretty poor verbally (one of my other issues) and can't remember anything.

Concerns

My two biggest concerns are with Central Sleep Apnea is that I risk further brain injury and death. I'm only 35 and I feel like its getting worse. I really don't think its an "obstructive issue" as I never had this issue before my last concussion, then it came on suddenly.


I've had a good number of solid concussions

Ran face first full speed into a BBQ grill and saw stars when I was 5
Hit in face with a Baseball (off bat) when I was 8
Sucker punched in the back of the head by a bully when I was 11
Dad thought I was an intruder at 14 and knocked me out in the middle of the night
Football concussion at 17
Second football concussion a few months later
Rolled a go cart at 45 mph no helmet at 20
Hit in head with steel pipe when pull up bar broke loose from ceiling at 22
Hit head on concrete header in basement at 32

I've also been in 4 auto accidents; 3 of them at age 18 that were minor fender benders right after my football concussions. Then I rolled my truck at 33 after my concrete header incident. I didn't hit my head in any of them but they all induced a bit of whiplash/nausea.

I'm 35 now. Essentially unemployed. I don't drive much at all.

I feel like my family has the expectations of me that they had when I was an honor roll student in high school... math team... football team... doing fundraisers... working side jobs. Its hard explaining that I can send them emails but doing much else makes me dizzy. I come from a "put a bandaid on it and you'll be fine" kind of family with high expectations.

My wife has become pretty understanding this past two years. She's seeing that I'm breaking down.

Something that weighs on me a lot... I locked my dog in my truck 6 months after my concrete header concussion. He died from heat exhaustion. It makes me feel incompetent... I'm concerned about taking care of my 5 year old when my wife goes out... so she usually takes him.

I lose everything... you hand me something and tell me to put it away... its gone. No idea where I put it.

I can't find anything... I never seem to consider the "obvious place". About the only thing I do for myself anymore is fry eggs in the morning. I help my wife around the house... but I"m mostly sedentary, I spend a lot of time on the internet reading. I just get dizzy from everything... even taking a shower... I have to lay down afterwards. The one task around the house I do is mowing the lawn. I have a self propelled walk behind. It takes about 2 hours to mow it. I do it over 4 or 5 days, skipping days in between. By the time I make it to the other end... It seems like its growing again. I also chop firewood. I can't bend over and pick it up to stack or set it up to split... my wife does that. I just swing the maul. I can put in about 20-30 minutes before I'm dizzy.

Before my last concussion, after college I was self employed as a carpenter/plumber/electrician. I had great customers... good business. I took on huge jobs; complete gut rehabs, etc. Now I I take on a handy man 4 hour job once every 2 weeks or so. I usually need to take some kind of pain killer to cope with it. Nothing on ladders, else dizzy. No crawlspaces, else dizzy. No roofs, else dizzy. Usually its basic things that I can do while upright or I get my wife to help me and talk her through what needs to be done. Its July. I don't think I've earned $900 this year.

My son has severe hemophilia. I start his IV's every couple days. That's the other big thing I contribute. His bleeding disorder puts a lot of stress on me. At the same time... his disability check is what feeds my family right now.

I've thought about applying for SSI myself. I was always pretty hardcore about self reliance so its a big slap in the face that I've yet to get past. But my family is struggling and I'm in no position to help.


That's pretty much my story.


NEVER KNOCK YOUR NOG!!!

If you can't work, you need to get a Social Security Disability Income application started. The longer you wait, the less you will receive.

If there are sleeping positions where you breath OK, try to sleep that way. The spooning direction may be OK but when you roll over, you may cause your CSA. Getting good safe sleep is far more important than snuggling with your wife.

CSA can cause a cumulative brain damage over years. My father suffered from untreated chronic CSA. It slowly took his cognitive skills over 30 years.

The 'mouth mandibular thingy' is for Obstructive Sleep Apnea. It is difficult to treat CSA. Most sleep specialists will try to use OSA treatments for CSA problems.

There are recording Pulse Oximeters with alarm systems. There is also a diaphragmatic pacemaker that triggers the diaphragm to contract. It requires surgery to implant a receiver on the phrenic nerve and a belt with a signal sender is worn at night. It causes a jerky breath. http://www.averybiomedical.com/

It sounds like you could do some sleep position/posture modification to help your breathing rather than taking extreme steps.

I don't even get in bed until I am drop dead ready to sleep. I start to fall asleep in my recliner then I get in bed and am asleep in a good flat on my back position withing a minute.

Thanks Mark. I've been reading your posts (and others) for about 2 years now. I've been withholding from signing up because it seemed like admitting failure in a way to need this forum... but many months later I'm not any better... So its time to fess up.

I've been witholding from signing up for benefits at least since I was 22 and got hit in the head with that pipe. Always felt like giving up... With a family dependent on me and no income through the door for close to 3 years I'm getting closer to giving up. I've used up every deferment I can on rent... we're wearing pretty tattered clothes bought 2+ years ago at second hand stores. We (wife, son, and I) live on my kids food stamps and his small SSI check.

Spooning with the Mrs has been an ad hoc solution... I would agree not the best long term solution. I get good/decent sleep while we're spooned and I can feel her breath... but as soon as I roll over I stop breathing... I always seem to need to roll over as my arm or her arm goes asleep. So its probably not the best solution but sometimes I just want an hour of good sleep though.

I'm definitely concerned about cumulative brain damage from CSA. I'm also really scared about just not ever waking up again; dying. Its good, in a sense, to hear that your father made it 30 years like this even though he deteriorated; sorry about that btw.

I get the sense my neuro is going to push for OSA treatment protocols. I'm less than enthusiastic. I'm going to give it a go with whatever I get... It can't get much worse shy of not breathing at all. Do you have any experience with the BiPAP machines? I kind of like the idea of some sense of "stimulation" beyond just positive air pressure.

"There are recording Pulse Oximeters with alarm systems." Any recommendations on where to get / which brands?

I'm really anti surgery. Being dependent on some kind of implant seems really sketchy.

I recently got a good neck pillow... I find I'm able to get some zz's on my back sometimes... but even then I end up getting that "pass out" feeling. I toss and turn stomach, back, side, other side... all night. Sometimes with pillow, sometimes neck pillow, sometimes no pillow... pretty much all the positions lead to "pass out" feeling.

I hear you on not going to bed until drop dead ready. Sometimes I stay up until 3 AM. In the end I always tend to spend about 12 hours a day laying down... be it resting or "sleeping". I don't own a recliner... might look into one though.

Thanks! Best of luck with your situation btw. You're not alone man.

The value of a recliner is quite simple. You can't roll over in a recliner. Once you find your comfortable position, you can sleep in that position for a long time. In the beginning, I had to use pillows around me to prop up my arms so they did not hang and get uncomfortable.

It will take some experimenting to find the sleep position that works. Recliners are common in thrift stores.

Don't delay with your SSDI application. You can always stop the application but getting started late is a costly mistake. I continued trying to work but my declining income cost me hundreds of dollars in monthly benefits.

There are body size sleep pillows available. Pregnant women use them for support. Maybe a body pillow will allow you to sleep in that spoon position, spooning the pillow.

Experiment with different neck/head positions. Hopefully, you will be able to find one that is good.

My best to you.

I was diagnosed with obstructive sleep apnea. Additionally, I was given a cpap machine to try out for a month by the vendor, as suggested by the doctor, and it worked. I asked the doctor if losing weight might make the apnea go away and his response was, 'absolutely'. So, fast forward a year later and I've lost over 20 pounds, I'm sleeping without the CPAP machine, and I am not as tired as I used to be.

It almost sounds to me like you are second guessing your doctor (the expert). Did you ask enough questions? I'm only suggesting that understanding the facts is imperative.

I plan to get re-tested when I've lost a few more pounds, but in the meantime, my wife is not waking me and telling me to roll over at night.

Changing my diet is helping in many ways, including a clearer head. Food for thought.

Jamie