Paradoxical Vocal Fold Motion...could you have it? I do!!

[Rena705]

Well, I hope all is well here on the forum and I am really sorry to hear about the trouble that Quix is having!  This stupid disease never seems to let up on our group does it?

Well I went to see my notoriously ridiculous gp today and I explained the breathing trouble I have been having.  She said that she thinks it's sleep apnea but I changed her mind on that one real quick!  Yay me!!
I found an article on the internet and I know we are not supposed to search the internet and try to self diagnose but in this case...I WAS RIGHT!!  Can you believe it??  I am still sitting here in total shock!

Paradoxical Vocal Fold Motion...sounds a little scary and trust me...IT IS!!!
The symptoms are:  sudden inability to inhale
                                   a sensation of shortness of breath, choking or strangling
                                   gasping sound when inhaling
The causes can be: Gastroesophageal Reflux Disorder
                                   Athletes gasping for breath
                                   Neurological
The treatment is try to get the Reflux under control if it is indeed the cause.  Breathing training is an option whereby you can learn to control your vocal cords better.  If these fail to work and the problem becomes chronic a tracheotomy may be indicated.
This is all new to me and my doc said that she has only had 2 other's that she diagnosed with this malady.  She is sending me to an ENT FINALLY and then I will be going for voice therapy.
I hope no one else ends up with this as it is incredibly terrifying as you can imagine I am sure.  We would all freak out if we couldn't suddenly breathe I guess.
I will keep you updated as to what happens with this.  I am still waiting to see a urologist about my bladder spasms but the Tizanidine is working quite well and has allowed me to get on with things that were too painful to do before I started the Tizanidine.  

Lots of Hugs,
Rena

[hornblower54]

I started having PVFM after 3 weeks of viral bronchitis. I was wrongly treated for asthma for several months. I went to an ENT. He scoped me and put me on an antibiotic. Finally, I was referred to the Otolaryngology department of a teaching hospital. The dr scoped me, triggered an attack and got it on film. She started me on prilosec in addition to the Zantac I was already taking. Also no eating 2-3 hrs before going to bed. Raised the head of the bed. The attacks started decreasing and finally were finished in 2 months. I had gone on short term disability and was able to go back to work. I still had an occasional attack if I ate spicy food like salsa. I have not had an attack in 10 months. I had speech therapy. My voice still tires when it is used too much. There is hope and a light at the end of the tunnel.

[cainer]

hi  my experience with that sleep test-   my opinion   its a scam!!!

didnt sleep at all-none- i didnt say anything about it-go to see dr  for follow up and said everything was fine!   it doesnt know if you are asleep-    i was shocked...    maybe it helps some people but i do not see how

[Rena705]

Sumana...I am just wondering if this might be worth your while to mention to your pulmonologist?  My gp said that a pulmonologist can diagnose it although it's usually diagnosed by and ear, nose and throat specialist.  
Seems to me that if the sleep apnea test was inconclusive the first time and you don't want to do it again you shouldn't have to if other possibilities may be apparent.  I don't think it would hurt to mention the possibility of the to the lung doc anyway...it's not common and it's not something they initially look for.  As usual, they tend to look for the obvious possibilities without REALLY LISTENING to us and I am sure if they did listen more often it would save a lot of health care money which seems to be everyone's #1 tendency these days.\
Just a fresh thought my dear and you can do with it what you want but I do think it would be worth looking into don't you?

Lots of Hugs,
Rena

[Sumanadevii]

Thank you for answering.  My personal opinion of the sleep apnea testing is they are a waste of time but when all three decided it had to be done, I gave in.  Of course, I feel I wasted a night...in pain...in a bed that didn't offer much comfort...for NOTHING...and now they want another night to figure things out.  I am going to listen to the lung doctor but it sure better make sense to me WHY it has to be done again.  I swear, I don't believe anything about this new sleep apnea and we are supporting a money maker.  I don't usually feel that way about the medical profession but on this one I do....

Please do keep me updated.  I will update when I see the lung doctor.  Probably won't keep the appointment in the morning because of snow.

Sumana

[Rena705]

Hi Red, what you have written about the speech therapy is about what the doc explained other than apparently they use a laryngoscope(sp?) so I can see my vocal flaps (cords) which I imagine would be quite beneficial.  I will give updates about this as I move along.  I am not on here a lot for a few reasons but I never disappear so be patient and I will drop in here and there.

Sumanadevil, I think that I am glad that I was able to duck the sleep apnea tests because I really don't believe I  have it....and I think my doc knows that if she books a test I don't want I just cancel it and then she has to answer for it...something I just learned and I can save our healthcare system precious dollars.  Anyway, back to the topic, I only have this when I am lying down and it seems to happen just prior to dropping off to sleep when I have a rude awakening by not being able to inhale.  Just darn scary!!!!  This is the only time it happens so far and I hope it doesn't happen again!!  I will let you know how things are going as I move along.

Hugs,
Rena

[RedFlame]

the more I hear you two talk the scarier it is.  

Hugs,

Red

[Sumanadevii]

Mine is neurological.  I guess every doctor treats it differently. My lung doctor insisted on the sleep apnea tests.  I balked.  He insisted then my neuro insisted then the cardiologist.  As a group they win.  Reason?  You can do damage to your heart because the muscles slow down when we rest...The heart will labor for breath.  I like you have been assured that I really won't stop breathing but it doesn't seem like that at times.....The first sleep apena test didn't show what the lung doctor wanted to prove and a repeat is necessary. I am suppose to see him tomorrow but we are expecting snow...probably will miss it.  I will update you on what he has to say.....

Are you only doing this when you wake?  Mine takes place at other times too...Maybe the difference?

[RedFlame]

Good for you Rena, there are allot of times that we are right as we are the ones who knows our body the best.  Good for you!!

And it sounds terrifying!  

I taught voice for 15 years and sang opera professionally so this really piqued my interest.  It does look like you will need several types of professionals, the ENT, Gastroenterologist and Speech-Language Therapist.

The speech therapist will teach you breathing techniques that give you control of your diaphragm and proper inflation of your lungs.  Then, she will help you understand your larynx and how each muscle and cartilage works.   Then I would imagine she/he would do specific therapy with your vocal cords.

My gut instinct is that the most important professional will be the speech/language therapist.  

I would love to know what happens and how things go.

Red

[Rena705]

It is scary Lulu!  However, the doc said I can't die from this which is a plus!  Apparently if I am unable to inhale,  I will eventually pass out and then my vocal cords will relax and I will be able to breathe again...all I know is she better be right about THIS ONE!!
I guess we have to raise the head of our bed 4-6 inches and it will help and increase my Prevacid as well.  I am hoping it won't take toooooo long to get into therapy though...it's nuts how long we have to wait to get help isn't it?!
Thank you for the kind messages ladies and we will talk soon I am sure!

Hugs,
Rena

[Lulu54]

Rena,
Wow, you did good girl in not letting her dismiss you with the apnea dx.  That is quite a scarey sounding problem - I wonder if that is what happened to DJ so long ago when they had to do the trach?

I hope the solution is simple like controlling the GERD's.

feel better, Lulu

[HVAC]

Sounds pretty yucky.

Alex