Breathing problems? Don't give up.

It started when I was a baby. I slept on my mother's stomach the first year and half I was alive. No one knew what was wrong, but I would quit breathing while asleep. This was August 1945. I got better, then, after a severe car wreck in 2001, I got worse again.

Fast forward to me jumping out of bed at night gasping for air. I was told to get a sleep study, but couldn't be bothered. A few months later I went. I got better on the Respironics BiPap Auto. Then I got worse.

I had Vocal Cord Dysfunction. I got better after they provided Heliox.

My Pulse Ox dropped. In the dr. office I would hit around 90. They said nothing wrong there. I bought my own SPO 5500 pulse ox and took notes.
We discovered my pulse ox was dropping into the mid to low 80s. I took all the tests, but I was "normal". I didn't give up.

At the National Jewish Hospital in Denver, my week of testing lasted over four weeks and they found a hole/tear in my heart. They put an implant in and my pulse ox problem was mostly cured.

During a Bronchoscopy and at NJC they found that when I quit breathing, I would not start up again without help. My brain did not seem to know I was running low on air. I did not give up.

I was put on the Respironics BiPap Auto SV. But it still did not make sense. I was better, but something was still wrong with me. I did not give up.

Mainly with the help of a retired RN who worked in Neurology and is brilliant, I found out I have CCHS. I have been to three Neurologists and none caught it. Gotta love a good nurse.

"CCHS, or Congenital Central Hypoventilation Syndrome, is a disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired." No cure. I still haven't given up.

I had never heard of any of these things when I took my first sleep test.
So if YOU have problems that don't make sense, stick around. We have some gifted, intelligent people who are generous with their time and are willing to make suggestions. Don't ever give up.

Thankyou for sharing your history ! it really proves you have to take control of your circumstances & empower yourself with knowledge * ...a Jamaican fella once told me " to know is everything" that stuck with me, so simple, so profound.keep on keepin on , Tim

A truly inspiring message of determination, dllfo, thank you for sharing!

Thank you. I have a niece who had just emailed me that she was quitting her CPAP because she did not feel better after a few days. Grrrrrrrr

My parents bought a $250 burial policy for me in March 1946. I was 7 months old and (according to my 80 year old cousin who was there) I was dying.

Between the Lord and a Mother's love, nothing is impossible. Mom left us in 2000 and the umbilical cord is still stretching. She didn't give up on me and I can't let her down.

Dllfo, I think your story underscores the importance of fortitude, optimism, and even good old fashioned courage.

I'm so glad you shared that story! Thanks.

Thanks again. I wrote it several times and deleted it. Then wrote it again and kept trying until I could write it so it wasn't about me as much as it was something new people could read and ponder.

IF you are having breathing problems and the test say you are ok, print this thread and show it to your doctor. My Pulmonologist had faith in me. He said he believed me. And he sent me to see Dr. C. at NJC. After around a month of tests, where I scored normal in most, he found my problem. I think this takes me to the end of my quest to find out why I kept having these respiratory problems, yet always scored NORMAL on the tests. Dr. C kept up until he found the problem. Echocardiagram with Agitated Saline.


I think having a doctor who believed in me helped a lot. NO ONE wants to go 4 or 5 states away so they can be stuck with needles and do Pulmonary Function Tests until their ribs are sore. But having those two doctors showing faith that I really had something wrong with me helped more than I can say. So if you have a doctor who doesn't seem to believe you, try to get to one that does. You can't quit.

Anyone who feels like they don't know what to do next should PM me. I don't have all the answers, but where there is a will, there is a way.

1974, I was a 2Lt whose squadron of aircraft was returning from years in sunny South East Asia. My boss said to get an IBM Selectric with erasure feature. Base Supply said NO. We have to have a civilian typist. Long story short, I turned in the form and he read it. Royal Typewriter. A week later the Sgt called and said my typewriter was in, but Supply had screwed up and sent me an IBM. I yelled that we needed a typewriter now, I can't help it if Supply was a bunch of screw balls. Give it to me on a hand receipt and when my Royal gets here, I will return it. He said ok. I didn't give up. I knew he would read ROYAL, but I put the IBM numbers in the form. No one reads twenty or thirty numbers. We kept the IBM. Point is, keep hammering away and never give up. If WE don't believe in ourselves, who will?

yep there are like 70+ sleep disorders at last count and they keep inventing them when they run out of reimbursment sources it seems.

so you had a PFO? Did they repair it with a cardioseal? I had a TEE after my first stroke, ace'd that test, couldn't pass enough bubbles, but didn't give up looking.

has your neuro ever done a high res T1 scan of your brain stem to look for plaques and or damage from whiplash? But it doesn't usually pay to go down that path, even if they do find something they cannot do much about it. Remember #3 had a severe one.

I've always wondered about the car wreck aspect, read a few neurological papers on the topic once, I was involved with one in 73, had a Olds88 pull out in front of me while I was doing 65MPH in a Grand Torino, drove the rear axle of that Olds up under the front doors, hit the drunk broad so hard her Olds took out an almond tree after I hit her and since she didn't have any insurance, my uninsured coverage had to pay for the tree she took out.

I ate the steering wheel pretty good in that one, all I remember was a white flash, glass breaking and the CHP asking me if my teeth were missing before the crash? Huh? then I felt them in my mouth broken off at the gum line, had bridges and now implants ever since. I collapsed that steering wheel right around the steering column, they bend pretty easy.

I'm don't mean to sound like an ambulance chaser, diffo, but I'm still undiagnosed with similar symptoms. I have no O2 issues and maybe some mild sleep apnea and snoring issues at best. Years ago I started waking up at night with periodic 'gasping for air' episodes. I subsequently went on CPAP and the gasping issues disappeared for about a year. Then the insidious gasping with the mask (jumping out of bed to stand up, heart pounding, and gulp air) started coming back with a vengeance. It scared the hell out of me. I was afraid to go to bed at night. Then I heard about SV. Figuring what I had it was incurable, anyway, I broke just about every rule to get my SV. Since the day I got it i haven't been afraid to go to bed, and have not had any gasping episodes. Thanks for the thread.

Banned

PS: Had a couple of fender benders here and there.

If any of you have specific questions, fire away. I may not be able to help, but someone will figure it out.

The jumping out of bed in the middle of the night--ask your Pulmonologist to do a Methachlomine Challenge test (I always misspell that word). That is how they found a hint of Vocal Cord Dysfunction. My SV has pushed past the Vocal Cords so far.

Do you have readings of 30 on your SV? The NJC told me a pressure of 20 is like a hurricane in your throat. I haven't told them about the 30s.

I found the software just before they pulled it off the internet. 1.8.65.
I check my SmartCard every morning.

Some of us have been on here awhile and it is soon obvious what is wrong with us NOT normal. The wreck has pretty much cost me 7 years of my life so far, but it was still worth it. Knowing what I know now, I would do it again. Sometimes being the "good guys" costs ya in spades.

Gotta go, battery just beeped

Snoredog, I meant to address your hitting that poor lady who had been sampling the grapes too much. I always hate to hear of a wreck where a DUI is involved because innocent people seem to get hurt. Nice touch about the officer asking you if your teeth were missing before the wreck. My wife broke around 8 teeth in our 2001 wreck.

You asked what they put in my heart? Amplatzer Multi-Fenestrated Septal Occluder. I have to carry a card with me stating what it is. They told me it was good enough I could have an MRI. Then they thought better of it.

I also found out getting a DNA test is not easy, unless you are looking for Paternity. One place advertised how you do that at home. Back when we were kids we had a simple test to determine paternity. It was the girl's father with a 12 gauge shotgun. Not sure if that is as accurate, but it is faster.

I turned in my Heliox and my Oxygen due to hassle from Medicrap. I told them I will get my oxygen from the EMT if I need it. Actually I intend to buy a Hudson RCI oxygen regulator or maybe Medline plus my own small oxygen bottle. Not sure where I will get it filled at, but worst case scenario, I can pay a DME to fill it. I have the prescription. I would prefer Heliox, but it is not available locally. It is a never ending battle.

Banned, Medicrap also says they don't think I need the expensive SV unit, but will agree I need a BiPap. If I have to sell a car to buy one, I will keep an SV. Apria says they don't have SV units in their inventory, they are too expensive and when BiPap machine breaks, they try to fix it themselves or throw it away. WOW. BUT my SV is too expensive to do that with. Hmmmm. I asked Apria, as a last gasp effort, how much does Medi-scare pay for a BiPap Auto vs the SV? If they pay $150 a month for a BiPap and (make up a number here) $200 a month for an SV, let me pay the $50 myself. I hate doing that with medicrap because when we offer to pay more and more, it is a slippery slope. I should look into buying an SV in
Canada. I already have a prescription for it.

The other strange thing is the lax manner Respironics seems to have when replacing a malfunctioning SV. Guess they forget the Ventilator word. I am amazed that they think a week turnaround is ok.

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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, bipap, DME, Prescription, auto

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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, bipap, DME, Prescription, auto