CPAP went Bye-Bye.

[FarmerJill]

So today after I had yet another breathing test....I stopped breathing for about 5-7 seconds while doing the test.....and it freaked me and the tech out....and that made the Doc decide to take me off the CPAP and back on Oxygen at night, along with my Dsra oral appliance.
I now they feel that I only have mild sleep apnea and it's really not necessary to treat it......since I have VCD (vocal cord dysfuntion) they are stumped. My heart rate is very high so I am now going back to the Cardio.....I am so tired of all of this. I have't any restful sleep in over a year. Doc said to me I have insomnia...I said "what?"......he said "well....you're not sleeping"....OMG! At home and at both sleep studies....I am asleep within 5 minutes. The minute I lay down....I"m out. I certainly don't have trouble falling to sleep.

So it looks like I am back at square 1. Somebody better save me before I snap...

[DreamDiver]

So today after I had yet another breathing test....I stopped breathing for about 5-7 seconds while doing the test.....and it freaked me and the tech out....and that made the Doc decide to take me off the CPAP and back on Oxygen at night, along with my Dsra oral appliance.
I now they feel that I only have mild sleep apnea and it's really not necessary to treat it......since I have VCD (vocal cord dysfuntion) they are stumped. My heart rate is very high so I am now going back to the Cardio.....I am so tired of all of this. I have't any restful sleep in over a year. Doc said to me I have insomnia...I said "what?"......he said "well....you're not sleeping"....OMG! At home and at both sleep studies....I am asleep within 5 minutes. The minute I lay down....I"m out. I certainly don't have trouble falling to sleep.

So it looks like I am back at square 1. Somebody better save me before I snap...

Sorry it's been difficult for you. There's a lot the sleep docs don't know about sleep yet. I hope your Cardio visit produces a better understanding of what's going on. Good luck.

[torontoCPAPguy]

Whatever you do, don't give up!
First thing I would do is change doctors. Frankly your MD sounds like a moron. And a good specialist in respirology, neurology, sleep disorders are all part of the package. I would take in a cardiologist as well.
I spent almost a month on full life support after a bout with H1N1 last summer and despite the fact that they managed to save my life after two code blues I am sure I am getting better care outside of the hospital than inside thehospital. I am also sure that I am sleeping now for the first time in twenty years or more. I have never dreamed in 20 years.... now I do dream again. I have spent the last several weeks finding the right blower and accessories and the right mask and now that I am pretty much there (very lucky) I have had a week of GREAT sleep. I am trying to aim at 8 - 10 hours per night to ensure that I get at least 8. Other bad habits must also be changed. No drinking or eating within 2 hours of going to bed otherwise you may be asleep but your body is still working. Make sure you have a good humidifier and get used to lots of humidity in the line... it will keep your nose unplugged and keep you from coughing if you get a cold or tickle. Better sleep. And the list goes on... all contributing to a better night of sleep. I used to hear the floor squeek if anyone went to the washroom at night.. now they could set a bomb off under me and I sleep thru it. And you need to get a handle on what's going on YOURSELF. Be an advocate for YOURSELF. And that means getting a data recording machine and watching it for pressure variations, APNEA events, etc. I find myself down to very low numbers for AH and AHI as well as ZERO APNEA events. And the mask (Mirage Activa LT) is comfy as heck. The machine quiet as a whisper. As with business and life in general you need to surround yourself with the best and if you are not satisfied with a SINGLE answer you need to dump them like a hot potato and GET THE BEST. If that means changing jobs to a job that comes with top notch government type health care insurance then perhaps that's what you need to do? But, do NOT give up. For every problem there is a solution and this is certainly one of those that has a solution... all you need to do is find it. And it takes gumption and good help. Good luck to you.

[BlackSpinner]

...and that made the Doc decide to take me off the CPAP and back on Oxygen at night, along with my Dsra oral appliance.

Why not add oxygen to cpap? - stent to airway open and add oxygen? I mean if you don't breath how will oxygen by itself help?

[cflame1]

Dllfo had both the O2 and the SV machine... he used to write about it having to go really high.

[BleepingBeauty]

So today after I had yet another breathing test....I stopped breathing for about 5-7 seconds while doing the test.....and it freaked me and the tech out....and that made the Doc decide to take me off the CPAP and back on Oxygen at night, along with my Dsra oral appliance.
I now they feel that I only have mild sleep apnea and it's really not necessary to treat it......since I have VCD (vocal cord dysfuntion) they are stumped. My heart rate is very high so I am now going back to the Cardio.....I am so tired of all of this. I have't any restful sleep in over a year. Doc said to me I have insomnia...I said "what?"......he said "well....you're not sleeping"....OMG! At home and at both sleep studies....I am asleep within 5 minutes. The minute I lay down....I"m out. I certainly don't have trouble falling to sleep.

So it looks like I am back at square 1. Somebody better save me before I snap...

Your doc sounds like a hack. Even mild apnea needs to be treated. And it sure is unnerving when the doc is "stumped."

When you started xPAP, did you have a sleep doc? Or have you been relying on this doc who thinks you have insomnia? Hopefully, the cardiologist you go to see will be a little more on-the-ball than the doc who's referring you...

[montana user]

Adding oxygen only hides the apnic events, doesnt treat it! If CPAP can not keep up your oxygen, then yes add the oxygen to the CPAP. Im not a big believer in the dental device yet. Keep at it, Mild OSA is still OSA and needs treatment, not a band-aide of oxygen.

[FarmerJill]

Thanks to all!

Basically....when I used the CPAP.....my O2 levels were in the 90's.....without it......it has dipped as low as 38. If I used oxygen while I sleep....then my levels stay in the 90's. The pressure of the CPAP makes my vocal cords close...so I stop breathing.....that's the problem. I too, am not crazy about this Sleep Doc....he is a replacement for my old Doc that moved out of State. In our area.....we have very few to pick from and they also must be in my insurance group. Next week I go to the Cardio and the Vocal Cord Doc....so I am hoping for a better plan of action.

[cflame1]

I have been diagnosed with Vocal Cord Dysfunction. Go to the National Jewish Hospital website for additional info. I went back there for treatment last summer. For a week of diagnostic testing. Almost 6 weeks later I came home.

I was given Heliox to get oxygen past my Vocal Cords when they "slam shut". And GERD was the chief culprit. I am on Nexium twice a day and Mylanta before I go to bed. (Heliox is only made one place in Northern Calif. 70% Oxygen/30% Heliox or 80/20).

Sept 13, 2006 I was sitting here, in the same chair I am in as I type this, I finished a sentence and tried to breathe. I could not get any air to go in. I gasped for a few seconds, knew I was in trouble and tried to get to my oxygen bottle. I fell on my face in our tiled entryway and that is where the EMTs found me. My wife put the oxygen mask on me, and dialed 911.

I was taken to Mercy San Juan Hospital and put into their Critical Care Unit. None of the doctors had a clue what was wrong with me, but I was breathing somewhat normally again. Later, I was told when we pass out, the Vocal Cords will "release" after we lose consciousness. Luckily, a nurse was walking past my bed and overheard the questions. She stepped up, told them I have Vocal Cord Dysfunction and I need to have Heliox available. Their hospital did not have any.

I learned how to "breathe through" the attacks while in Denver. But it is very scary. Now that I am on the Respironics BiPAP Servo Ventilator, I feel like the reason I have had Encore Pro readings of 30 cmH2o for as long as 30 minutes is possibly attacks of VCD while asleep.

One other interesting point NJC made was that speech is the secondary function of our Vocal Cords. Protecting our lungs is the primary function.

I have been diagnosed with Vocal Cord Dysfunction. Go to the National Jewish Hospital website for additional info.

Here's that National Jewish website dllfo refers to above (VCD page):
http://www.nationaljewish.org/disease-i ... index.aspx


A Few More Related Links:

RT Magazine Article about VCD:
http://www.rtmagazine.com/issues/articl ... -10_06.asp


CHEST Article: "Understanding Vocal Cord Dysfunction- A Step in the Right Direction With a Long Road Ahead":
http://www.chestjournal.org/cgi/content/full/129/4/842


One VCD patient's web page containing VCD factoids, links, and other resources:
http://cantbreathesuspectvcd.com/

[grady61]

Thanks to all!

Basically....when I used the CPAP.....my O2 levels were in the 90's.....without it......it has dipped as low as 38. If I used oxygen while I sleep....then my levels stay in the 90's. The pressure of the CPAP makes my vocal cords close...so I stop breathing.....that's the problem. I too, am not crazy about this Sleep Doc....he is a replacement for my old Doc that moved out of State. In our area.....we have very few to pick from and they also must be in my insurance group. Next week I go to the Cardio and the Vocal Cord Doc....so I am hoping for a better plan of action.

holy moly 38? I went into an urgent care once and gotta pulse ox of 82 and they put me in an ambulance and shipped me off to the hospital.

[FarmerJill]

Thanks for the links.....it all helps!

[Tielman]

holy moly 38? I went into an urgent care once and gotta pulse ox of 82 and they put me in an ambulance and shipped me off to the hospital.

My sleep study (initial) was in a hospital, and they stopped the sleep study and gave me O2 when my ox dropped, even with the O2 I had a ox of 78.

Reminds me that when I have a chance I need to order a pulse-ox meter to double-check that it's still staying in the 90s....