Anyone Here Have Laryngeal Spasms &/or Vcd?

[Poohbear]

Anyone on this site have laryngeal spasms and/or vocal cord dysfunction to the point they quit breathing altogether?

I'm told this is another thing the ANS controls but haven't ever heard of anyone on this site having the kinds of problems I'm having with it.

[ramakentesh]

When im about to faint I get a wreird lump in my throat...??

[corina]

hi pooh!

can you explain me about the spasms and the vocql cord thing? i'm not quite sure what it means.

maybe it has something to do with what i experience as not being able to sing? when i try singing (as it always made me so happy to sing) after about 3 words i feel like getting some big lump in my throat and i can't sing anymore. no sound and i start yawning like crazy i never came to the point where i stopped breathing as it seems that my body protects me from overdoing it! my doc said that it happens when there's a lack of oxygen in my brain and that my body cuts things off to allow the oxygen in my blood to go up instead of being wasted on silly things like singing.

take care,

corina

[mkoven]

I've had my shortness of breath from ans problems misdiagnosed as vcd. i think a lot of docs don't understand how breathing is affected by dysautonomia

[Poohbear]

What I'm dealing with is sudden severe spasms of the vocal cords and larynx that completely cut off air supply. There is NO way for me to get air in my lungs when it happens. It is a medical emergency when it occurs.

I do have some of the other symptoms you describe at other times--lump in the throat, tightness when singing and those symptoms fall under a milder vocal cord dysfunction but the larnygeal spasm is much worse and very severe.

I do understand the ANS controls these involuntary muscle groups. I guess I'm trying to get a sense of if others on this site have these spasms.

I've known for years that I have much more than just "POTS" going on but since symptoms overlap I was just wondering if others on this site have also been diagnosed with VCD and/or laryngeal spasm.

It seems I'm having all the muscle groups affected----esophageal spasms, diaphram spasms, laryngeal spasm, cricopharyngeal spasm etc etc.

mkoven, how do you know your shortness of breath was misdiagnosed as vcd? What tests did you have that distinguished the differences for you?

[mkoven]

I was sent to a speech therapist who could find nothing wrong. My shortness of breath co-occurs with drops in bp.

[bizbiz]

Poohbear - so what do you do / what happens when your air supply gets totally cut off?

I dont know if this is the same thing or not, but I find that if I talk for a few minutes my throat starts getting really tight and my voice starts to go funny (almost like when you lose your voice when you have a sore throat). By this stage I am usually so frightened that I stop talking and try to relax all my muscles, but sometimes I get the feeling that my oesophogus is having spasms and I have to keep swallowing to stop the 'regurgitating sensation'. This doesnt happen to me when I talk all the time - sometimes I can talk for hours and be fine, sometimes I can only say a few words before I feel like I will suffocate myself.

[Megan]

Before I was diagnosed with POTS, I was diagnosed with VCD. (probably a misdiagnosis I would guess...) Anyway, I was sent to a kind of breathing therapy for a while where I learned a lot of weird breathing exercises and how to lift/speak/yell without straining my vocal cords, as well as some stretches. I don't know if that's an option for you, but it might be something to look into. I don't think there is a cure for VCD? I hope you find a way to ease your symptoms.

Meg

[Poohbear]

In my case it seems I do have VCD and yes, speech therapy has been ordered for that. My symptoms overlap with other autonomic symptoms but they are distinguishable. I also have some respiratory stuff going seperate and apart from the ANS and the VCD stuff.

As for the laryngeal spasms-- that is a rare form of VCD from what I understand. There is nothing they can really do to stop them. When I pass out the spasm releases and I can breathe again. If I get to where I stay in spasm and it doesn't release on it's own then they have to intubate. They can also release on their own sometimes after a minute or so (give or take a few seconds)

In my case I am dealing with numerous conditions at the same time but having the underlying ANS dysfunction makes the others harder to control I think.

I'm feeling super frustrated that I am constantly battling various rare conditions (althought the vcd isn't rare....just the laryngeal spasms) and everytime I have a laryngeal spasm it triggers the adrenaline response and then all my POTS symptoms flare and then the respiratory stuff gets flared. All the treatments for the various things conflict with each other so the end result so far is that I lay around unable to be up and around much at all. I FEEL LOUSY and I'M TIRED AND WEARY OF ALL OF IT!!!!! I know everyone here can probably relate to those feelings!

[flop]

Hi Poohbear,

it is good to hear from you but not good to find out about the spasms - they sound really nasty! Sorry no experience of vocal cord problems myself (get occasional spasms in my sternocleidomastoid muscle which are horrid but don't stop me from breathing) but wanted to send you ((((((((((hugs))))))))))

Flop

[POTSandVCD]

Poohbear, Any progress on this? I’ve recently been diagnosed with both POTS and VCD as well. Just starting the search.

 

[Cmama]

I'm a new member on this forum and I can not tell you all how grateful I am to have found this thread. I'm a mom of a really great 16 year old boy- I love this kid! But, he's gone through a lot in his life that was never understood but began at 10 weeks old. His first year of life, we were in the ER about 1 time a month with "severe croup." I have 3 kids and my others had croup too, but nothing like his. We often dealt with his airway closing and when he was 8 y/o we had 2 calls to 911 as he was turning blue. This happened again with needing to call 911 again in 7th grade (he lost consciousness) and this past Jan. 2020. He most often opens up a bit with Racemic Epinephrine which were have at home (inhaled with nebulizer) and we also have an Epi Pen for backup, if it's not enough. He's had to be transported from one hospital to another because they could not get him to open up enough as well. He's a bit old for "croup." He's nearly 6'3" and 205 lbs., so they began to call it "Laryngeal spasm." He was on reflux meds. his whole life- thinking maybe that was trigger, had scopes multiple times to rule out structural issues and tonsils out. He would also have dizzy spells, faint, nausea, strange coloring on limbs when he'd stand up. Most people though would never know he had any health issues at all- he's athletic, but when problems hit, they hit hard. We flew out to Mayo Clinic in MN this March (before the country shut down for the pandemic) and met with a team of doctors- learned he has POTS (discovered this by chance when talking about the non-airway issues). Now, they are thinking the airway is connected to POTS as well. My biggest fear was that if his throat closed he'd die- but the Dr. said- if he passes out his body should take over as it will naturally relax. For me, the greatest comfort was hearing from the doctor that his body would likely kick in to relax his airway if he passes out. I've never met anyone who had anything similar. My goal is to get to the point where he can go away for college safely- these emergency situations are very scary for him and also for us as his parents! They only have happened in the middle of the night and when he wakes us- it has often escalated to an emergency in about 10 minutes. 

[Pistol]

Hello @Cmama - welcome to the forum! I am so sorry that you son has all these scary issues. I am wondering if he might have allergies causing these spasms. Has he ever been evaluated by an allergist? Histamine release can trigger POTS symptoms since it is a vasodilator. Also - has he been evaluated for sleep apnea? You mention the emergencies always happen at night. A sleep study might shed some light on the issue. 

As far as I know POTS does not commonly cause the type of respiratory symptoms you describe, so it may be unrelated or - as I mentioned - it COULD be that it is due to allergies or immune issues that can cause POTS. What tests will Mayo be doing? 

[Ashc]

Shortness of breath could be from a lot of things. Some doctors oversee this and would only be diagnosed when worse.

[Cmama]

Thanks for your comments and thoughts. He has gone through allergy texting at a few times in his life and is allergic to absolutely nothing. Although, when he has his episodes it looks almost like anaphylaxis and Recemic Epi does tend to open him up. He's also had a sleep study and other than being wiggly- it's normal. They did the Tilt Table test to diagnose the POTS at Mayo Clinic- his heart rate jumped from 60 to 104 when being tilted at 70 degrees- so met that criteria. It answered the questions of why when he stands up his legs and arms get discolored and the occasional fainting, dizziness and frequent nausea that he experiences. Water intake and salt has been very helpful for him since we have learned about POTS for all of these things. He's feeling much better. But, at Mayo- he was assessed by Neuro, Pulm, GI, Immunologist, and ENT. The ENT explained that she believes the visceral nervous system his over-sensitive (which she thinks is tied to POTS possibly) and may be the cause of a Laryngospasm for whatever reason. As a child he gaged all the time- if he saw someone chew gum, eat certain things, or in sports when kids wore mouth guards. He'd run our the gym to vomit- that was not awesome. He also could not eat certain things. He's had to work through that issue- and had really done really well- a victory that he now actually chew gum. His lungs have always been good- it's just this throat that will suddenly close and it's always tied to some kind of cold symptom- but he can also have colds and not have an episode. 

[Pistol]

@Cmama - you mentioned he already sees a gI but I wanted to tell you that my FIL gets horrible spasms from acid reflux. When triggered ( like if he drinks something acidic that stimulates his acid production ) he starts gagging and coughing. His EGD shows GERD and his allergist told him it's from reflux, so did his GI. 

[Cmama]

Yeah- he's actually been on reflux meds. his entire life (since 1 years old anyway). He's had many scopes, ph studies throughout the years. At some points, there was evidence of reflux at other times it looked perfect. They have taken him off 2 times. The GI at Mayo Clinic does not think it's reflux which is interesting. The previous GI also feel this way. So we just took him off again in May 2020. They scoped him the day after an episode in January 2020- esophagus and lungs-  just wondering what it looked like in there- and it was perfect. No signs of irritation or inflamation. So weird. It seems to tighten just be at his larynx area- the trigger is the mystery.  

[Pistol]

@Cmama - I just looked up Laryngospasm and it states the causes are allergies, asthma, GERD, stress, irritants and anxiety - and it commonly wakes people up from sleep. Sounds like that is what your son is experiencing. Since he does not have GERD and is not allergic - could there be any irritants in your home - smoke, mold, fumes etc? 

It is not a known symptom of POTS, so it must be unrelated. The thing I would be concerned about is giving him epinephrine when he has POTS, but of course if it helps his spasms he obviously needs it. 

Have they ever considered and SSRI or SBRI? It is commonly used for POTS and also could help for the anxiety that naturally occurs due to the spasms. 

[Milisar]

I was diagnosed with pots in 2022 and improved a lot with fludrocortisone. Poohbear what meds have you tried and is your son on this med too? 

Over the last few months I noticed my mouth seemed like it had an unusual amount of saliva in it where I felt I started drooling, so I'd stop what I was doing and forced myself to swallow, but noticed it could take several tries to actually swallow and I'd have an upper torso (diaphragm) spasm. The spasms aren't new. Bright lights could cause them or after eating heavy meals and talking too much could cause them as well as laying down. After swallowing triggering these spasms was new. 

I just had a barium swallow test with a speech pathologist and she said they were larangeal spasms. I'm down about this, but definitely think it's associated with ans issues. I've found electrolytes help significantly and I wonder if I have that sodium potassium voltage gate issue they talk about in dysautonomia forums. 

When I have trouble breathing (air hunger) I've measured my respiratory rate and I can only get in 9-10 breaths a minute. After taking electrolytes it goes up to 15 and I'm not so dizzy anymore. I'm just wondering if the larangeal spasming also would be impacted y electrolytes.