Vocal Cord Dysfunction and ANS response.

[Shell]

I saw a specialist in VCD yesterday as my Respir Cons thought the constant voice loss and some other stuff was probably VCD and not just the asthma or other breathing stuff (orthostatic)

The woman I saw was very good. She took a full history, was fine about my reading research and then I had the lovely camera up nose down throat experience. She was amazed at how bad it was down there. Sometimes it takes a while to get a dx apparently but it was very obvious - thankfully as once is enough with that camera thanks!
I was (thankfully) able to give a precise history showing I know the difference between the asthma stuff and the 'all in my throat' stuff.
I seem to have EERD as well (extra-esophagal-reflux).

Interestingly as she was explaining VCD to me she mentioned "fight and flight" response - that is ans related. So it seems its more dysautonomic stuff. She didn't know about dysautonomia- IST, Hyper POTS but was interested in the research I mentioned.
Anyone else had a dx of VCD or have symptoms?
I'm to start therapy in Nov which will help manage the thing but with the ANS response problem won't cure it.

 

[anciendaze]

I have an implanted vagus nerve stimulator which affects the parasympathetic branch of the autonomic nervous system. When it is active others who know me can tell that it periodically disturbs my voice. They have even been able to tell when the length of a pulse has been changed, even though I had not told them this had been adjusted. I also have tinnitus, which is an indication of nerve damage.

 

[Chris]

Hi, Shell; I had that up the nose camera thing about 8 years ago, because of loss of voice some 6 months or so after heart surgery. I was told that it was not uncommon after a major illness or trauma, and would probably resolve after a while, though there was a speech training program I could take that might help. It resolved after a while, and has not come back. Interesting that it might be ANS related, though. Chris

 

[AndyPandy]

I have recurring loss of voice when my CFS is bad. I didn't have it before CFS. I know I have been overdoing it when my voice goes. I haven't looked into the reasons why it happens. I also lose my voice with asthma, but this is different. I don't know what VCD is. Something to google today!

 

[physicsstudent13]

I saw a specialist in VCD yesterday as my Respir Cons thought the constant voice loss and some other stuff was probably VCD and not just the asthma or other breathing stuff (orthostatic)

The woman I saw was very good. She took a full history, was fine about my reading research and then I had the lovely camera up nose down throat experience. She was amazed at how bad it was down there. Sometimes it takes a while to get a dx apparently but it was very obvious - thankfully as once is enough with that camera thanks!
I was (thankfully) able to give a precise history showing I know the difference between the asthma stuff and the 'all in my throat' stuff.
I seem to have EERD as well (extra-esophagal-reflux).

Interestingly as she was explaining VCD to me she mentioned "fight and flight" response - that is ans related. So it seems its more dysautonomic stuff. She didn't know about dysautonomia- IST, Hyper POTS but was interested in the research I mentioned.
Anyone else had a dx of VCD or have symptoms?
I'm to start therapy in Nov which will help manage the thing but with the ANS response problem won't cure it.

I was told by the pulmonologist that I have VCD but other docs disagree. I just have horrible brain fog and exhaustion and my oxygen on finger oximeter is 86%, 75% at night. Is there anything that helps for VCD?
one surgeon told me that my airway is narrow, but others say I'm ok and don't have VCD so I don't know what to think. I take inhalers and they don't seem to do much and I can't exhale and wheeze and have resistance

 

[AndyPandy]

My problems with loss of voice and rasping voice have improved as my ME/CFS has improved. The worst was when I was mostly bedridden with severe ME/CFS including severe cognitive problems. I still have some problems with my voice when I overdo it, but nothing like before.

I didn't do anything specific to try to cure my voice problems. I just avoided talking and tried to conserve my energy. I just accepted it as yet another baffling and horrible part of this condition and focussed my efforts on trying to get better.

Best wishes for improvement.

 

[physicsstudent13]

well low oxygen to the brain can definitely cause cognitive problems maybe it even causes brain damage, like people who have been without oxgyen for 3 minutes go brain dead. I'm at 75% oxygen at night and started taking oxygen through a cannula

 

[Valentijn]

I just have horrible brain fog and exhaustion and my oxygen on finger oximeter is 86%, 75% at night.

What's your blood pressure (and pulse pressure) when this is happening? My oxygen saturation drops when my pulse pressure gets too low.

 

[physicsstudent13]

my blood pressure is kind of high when I measure it at 130/90. when I take meds it's 100/80

 

[Valentijn]

my blood pressure is kind of high when I measure it at 130/90. when I take meds it's 100/80

The 100/80 is a problem. That means your pulse pressure is only 20 100 - 80 = 20), which means you're circulating blood (and oxygen) very slowly. Normal is 40-50. What meds are doing that to you, and can you talk to your doc about it? 20 pulse pressure is really awful