Vocal cord dysfunction

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I am reliable, my health isn’t

I have vocal cord dysfunction wrong diagnosed as severe asthma and was treated for asthma for ten years. My airway clamps off when I am exposed to strong odors, perfumes, cleaners, lotions, hair products, soap, humid weather, exercise, laying flat, bending over, being frightened….anything. I am a registered nurse that loves patient contact, but I can no longer do it and breathe. The anxiety surrounding anticipating the next attack is palpable. The only hope to get better, or stay out of the hospital is to stay away from my triggers…sensitivity not allergy do avoidance is the answer. Yet this means avoiding everything and everyone. No more hugs, no going out to eat unless it’s outside on a good breathing day. No birthday parties, thanksgiving gathering, no working as an ICU nurse. Depression with suicidal ideation, chronic back issues from car accident.
Having a really hard time keeping my head above water. Working hard to do the things I need to do to make it through hard days, and enjoy the good ones.
I look normal, healthy and strong yet I don’t feel like any of those things.

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Sometimes I hate language #Autism #CommunicationDisorder #AugmentativeAndAlternativeCommunication #LanguageDisorder

Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

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I’m new here!

Hi, my name is wrynky_dink. I’m new to The Mighty and look forward to sharing my story. My EDS, POTS, and MCAS have been long suspected, but only diagnosed this month, and I’m looking forward to having a direction to work in towards recovery :)

#MightyTogether #Depression #Anxiety #VocalCordDysfunction #ehlers-DanlosSyndrome #ADHD #Dysautonomia

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World Voice Day post #WVD

Well, before World Voice Day ends, I guess I should follow through on my impulse this morning to post something about it, spawned by a suggestion from the National Spasmodic Dysphonia Association. I guess I should start with I don't actually have a diagnosis for my vocal spasms and the related breathing, and sometimes swallowing issues, #Undiagnosed but SD was one of the working assumptions by several people in my life (medical professional and otherwise) for a long time. I've been questioning if we got it right recently, but am not sure I'll ever really know, given the lack of specialists arouhd here, and several other factors. Or, for that matter, how much good it would do me, other than just knowing, given the lack of research and knowledge that exists on some of the other possibilities.
#Dystonia #VocalCordDysfunction

Anyways, combined with some of the #CPTSD #Trauma #PTSD issues, and the #Autism and #AdultDiagnosis and #SensoryProcessingDisorder #SensoryIntegration issues, I've been dealing with voice issues, and difficulties with #speech and #SpeechDisorders all my life. It was only by giving up on speech as my main method of communication that I was able to learn that there was a purpose for speech, and that it sometimes did have its' uses. #CommunicationDisorders after many years of using AAC for any communication situation I wasn't comfortable in, I am slowly coming to see that not only is speech not the enemy, nor is communication as a whole, but that despite my #CentralAuditoryProcessingDisorder , sometimes I do also prefer to hear certain people's voices, and communicate with them in real time, and through this very difficult medium (for me) with them.

Having been allowed to take control of how I communicate in communicative situations has made a world of difference for me, and changed my whole perspective on socialization on general. Especially as diversity is becoming more accepted in society (mostly. Don't get me started on the backsliding I see happening during COVID!) so that there is less animosity and more patience exhibited by society when they see me using AAC.

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Questioning the origin of my vocal spasms

#VocalCordDysfunction #Dystonia #Autism #Dysphagia #SensoryIntegration #SensoryProcessingDisorder #MotorDisorders #Dyspraxia #Apraxia #ApraxiaOfSpeech #Undiagnosed I posted a question on the vocal cord dysfunction and dystonia communities earlier tonight, and then did a little research on vocal cord dysfunction in order to see if I could find any answers to a question that has been unanswered or partially answered for decades in my life. About the cause of the painful vocal spasms I've had all my life, and the dysphagia issues that developed in early adulthood, that seemed to be related. An exacerbation, if you will. Both have waxed and waned significantly since.

What I found google suggested two things: 1. Nobody in the medical community really has a clue about vocal spasms, although the field of dystonia has more knowledge than the rest. And 2: Given all my other issues, it is entirely likely these symptoms are not caused by jyst one thing. It could be a number of things! Oh yeah, I forgot to add #Trauma #PTSD #CPTSD and #Asthma to the list of potential factors. Oh, and #childabusesurvivor .

Stress does seem to have played a factor, as does #Fatigue especially as I consider the baseline level of fatigue and stress I lived with for most if my life that I am only now beginning to realize the effects they must've had on me, and how much it all must've inhibited my abilities and ability to grow as a person, and to learn. (Which were hidden due to my high intelligence and academic ability. #Hyperlexia played a factor in that. And the general intolerance of the people in my environment, and the ableist nature of society in general.) And the cost its all had on/to me.

But there's a lot of neurological complexities too, as you can see by the hashtags. It makes me leery of trying yo officially get this sorted out after all. Most medical professionals won't know quite what to make of it all, if they even know the terms! Still, I wonder... I've always thought it was one thing, or mostly one thing, but maybe it isn't. Maybe it is more part of the whole "interesting neurological mess" thing so many autistics find themselves dealing with. (Multiple neurological syndromes that are too complicated to try to explain how they all work, never mind interact, to outsiders)

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What is the difference between vocal cord dysfunction and spasmodic dystonia?

#VocalCordDysfunction #Dystonia #Undiagnosed
I've been dealing with vocal cord spasms that affect my breathing for virtually my entire life. It was once upon a time suggested it might be vocal cord dysfunction, but at the time, my speech pathologist had just learned about the existence of the condition, and little was known about it. It was assumed to be an entirely psychological condition. That never made sense to me.

Later, a friend asked me if I'd ever been evaluated for spasmodic dysphonia, AKA laryngeal dystonia. When I looked that up, having never heard of it, I discovered it sound like me. One of my doctors agreed, but there was no one in my city who specialized in dystonia. My speech pathologist was always too intimidated by its rarity that she refused to diagnose it. My symptoms, while annoying, and difficult sometimes, weren't severe enough to really need treatment, beyond muscle relaxants, even though they sometimes interfered with my ability to speak and later, to swallow. So we decided not to pursue diagnosis. The muscle relaxants reduce the severity of the spasms and the pain, but not the frequency of them.

We operated on the assumption that it probably was dystopia, and explained it as such when need be. That worked for many years. However, a few years ago I started wondering if we had it right, as I'd had a long period of time without any major flare ups. Not sure how long because it all was so common that unless it really demanded my attention, I didn't pay the whole thing much attention. I continued to have regular minor issues with swallowing, and the occasional spasm that interfered with my ability to speak, briefly. Sometimes they would completely wreck my vocal coordination for a bit.

While SD can have short periods of remission, it is not supposed to have long ones. Also it doesn't normally affect breathing, although I see they are discovering a variant where it can occasionally. It is also not supposed to be painful, though my issues always have been. My current autism specialist suggested maybe it was a neurodevelopmental thing I'd grown out of. Also a good possibility given many of my other motor issues. But then about ... maybe 2 years ago, the painful spasms came back with a vengeance! The seem to be largely fatigue related, although maybe it gas gotten more complicated since. I can't take the time to lay down every time they flare at this frequency!

Some of what I've read in this community sounds familiar, but I really don't know anything about vocal cord dysfunction, so I thought I'd ask for advice here. And then go do a Google search.

Any help would be appreciated.

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I have no friends to talk to on here who will be my friend and check in?

#DistractMe #Upallnight #FlareUps #PTSD #VocalCordDysfunction #VocalCordDysfunctionFamilial #PTSD -old #CPTSD #COVID19 #MightyBookClub #MightyTogether #MightyPoets #mightyartists #MightyMusic #MightyQuestions #TheMighty #Disability #Aspergers #HashimotosThyroiditis #HypothyroidismUnderactiveThyroidDisease #mightywarriors #mightymonday #Pledge2EndBullying #TheMighty #CheckInWithMe #ChronicPain #Yoga #Art #ArtTherapy #Spoonie #Bipolar2Disorder #BorderlinePersonalityDisorder a guy was sad bc women on dating apps are mean to him then I’m nice and say don’t harm yourself and in here for you and he’s rude and incredibly hurtful to me ghosts me and blocks me what gives? I’m not bad looking and it’s not even like I’m interested in him in that way is it a control tactic? Whining and threatening to harm himself looking for attention you give him kind s words he blocks and ghosts you?

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