Thanks Bruce

Hi, I'm so glad I found this website. I've had this Laryngospasm since I was a child. Although I never knew what it was until tonight! It somewhat went away for years throughout my adult life, however, recently in the past 5-7 years it has come back and happening more often now. Typically when I eat spicy or acidic foods like tomato sauce. Tonight, while out at dinner, in a crowded restaurant, I ordered oysters (not knowing it had a splash of hot sauce on them), I slurped an oyster in but got only the hot sauce and my throat immediately closed. I could not breathe for well over a minute and panicked! Waiters and staff were all scared and did not know what to do. They were going to perform the heimlich but there was nothing in my throat. After about a minute of wheezing and gasping for air I decided to blow out and slowly puff in a bit of air (not knowing there is a straw technique). This worked and my throat relaxed and almost instantly I was breathing again. Scared me so much I came straight home to do some research and found this forum. Here are some links I've found:

Laryngospasm:
https://www.webmd.com/heartbur...oms-and-treatments#2
https://www.youtube.com/watch?v=nPtdkqOLLP4
www.bastianmedicalmedia.com/videos
www.bastianmedicalmedia.com/laryngospasm

Laryngopharyngeal Reflux:
https://www.youtube.com/watch?v=3N-d5QP7A3k
https://www.webmd.com/heartbur...lent-reflux-overview

Laryngoscopy:
https://www.webmd.com/oral-hea...at-is-laryngoscopy#1

Victor, sounds like a very typical episode for me. I'm guessing yours is due to something else other than Kennedy's disease since you said yours started when young and as far as I know when caused by Kennedy's it is an adult onset symptom?

Anyway even if due to a different cause perhaps it works very similar. If so, when choking I find it best to relax as much as possible while waiting for it to subside. I lean back and tilt my head back and alternate between slow small exhalations and inhalations as it eases up. My episodes are always worse when nasally congested and everything I can do to keep my nose clear helps a lot to reduce both the frequency and severity of episodes.

Note that a laryngospasm is not choking - different pipes.

quote:

Note that a laryngospasm is not choking - different pipes.

Do you have a better word to describe the portion of time during a laryngospasm when ones breathing is significantly impacted?

It's pretty easy to find definitions which support the use of the word choking in the case of laryngospasm such as:

chok·ing (chōk'ing)
Upper airway obstruction resulting from a foreign object in the trachea or oropharynx, laryngeal spasm or edema, or external compression of the neck. A life-threatening situation such as asphyxia, hypoxia, and death may occur if the victim is unable to clear the airway by coughing. The inability to speak indicates a complete airway obstruction. The universal sign for choking is the grasping of the throat by the person choking.
See also: Heimlich maneuver
Medical Dictionary for the Health Professions and Nursing © Farlex 2012

Unfortunately, there isn't a single word. Perhaps a phrase may be needed e.g. "appears to be chocking."

quote:

Originally posted by Arthur:
Debbie and Friends,

I just experienced dry choking that was very scary for myself, wife and kids. I was eating some food with the hot sauce I've used hundreds of times before, but for some reason this time I feel like it hit a particular spot in my throat...then close if my entire airway. I'm glad to know i am not alone in experiencing this.

Hello everyone,
I am new to the forum. I was diagnosed a year ago with KD. I have laryngospasms fairly often, and they are so terrifying. Mine can be triggered by many things, even in the shower, if I inhale a tiny droplet of water, it will trigger one. They are the scariest part of this disease.
john

It will help if you start considering the spasms as annoying and not scary. You can't fight the spasm, it is doing what it thinks is correct. Just relax and it will pass more quickly. Talk to those you are often around and let them know that your spams are not threating. With experience, you will know when a spasm is happening so "wave off" those around you. I find a "one-minute" hand signal works well.

Sorry to hear of your trials and tribulations. Good advice from Bob; my wife is trained to ward off helpful Heimlich-ers, while I get my throat working, should I have a spasm in public (rare). While always unpleasant, the terror diminishes with familiarity. I have found that my spasms have reduced as I learn how to reduce triggering behaviours, and how to recognize onset and minimize. Hang in there, my friend.

Thanks for the information. I have begun to do that. But they are still so scary.

Hello Pierre: before I was diagnosed with KD 10 years ago I was experiencing being awakened with laryngospasms multiple times and I agree that it is scary. I now experience them infrequently and most of the time it is due to certain triggers, like eating highly spiced foods and alcoholic beverages. Recently found it difficult to swallow any carbonated beverage (but it does not trigger the dry drowning episode.
I suggest you take a look at the "smart exercises" found on the KDA website at https://www.kennedysdisease.or...e-and-lung-exercises

I have also found it beneficial to have a "swallow test" about every 5 years. Each time I have learned some adaption method to help me manage this problem. The first time I used those smart exercise to help the speech therapist learn about our unique swallowing issues. The therapist helped me learn how to do some of them properly and I still use what I have leaned from them to help keep my throat muscles working as well as possible.
I just had a swallow test early this month and this time I was able to see what happened as I swallowed. The speech pathologist encouraged me to cough to help clear my throat.
Please note that over time I have learned that
while we have the same condition our experiences are not always the same. So what works for me may not work as well for you. So please discuss what you learn from our website with your primary doctor as well as a speech pathologist and therapist to find what may help you better manage your swallowing issues.

My experience matches well with the comments and advice given. The common laryngospasm triggered by something inconsequential like a drop of water feels scary but staying calm and relaxed helps it to pass. Once in a while though when chewing food I'll have a somewhat involuntary swallow contraction causing me to begin swallowing more food than I want which can provoke worse laryngospasms that persist until the triggering food is cleared either by coughing it up or fully swallowing it down.

I've found this to be a bigger problem when I'm congested, fatigued, stressed or rushed. Trying to remain aware of my issues and limitations helps me avoid trouble. When I suspect trouble I turn to foods like soft boiled or poached eggs with butter which are easier for me to eat and sufficiently satisfying that I don't need large amounts.

I joined this site just to pass on information regarding Laryngospasms....taking magnesium and potassium helps to decrease spasms...also magnesium creams or sprays directing on throat help to relax the muscle. Leg cramp creams contain magnesium. Hope this helps everyone!!

Probably not applicable to SBMA'ers. It might be useful for leg cramps which seems to be a phase of SBMA.