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!!!