Old 10-14-2016, 07:03 PM #1 (permalink)
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Unhappy Throat closed off? Had NO AIR!

Hello,

I woke up at 3:00 AM this morning and couldn't breathe. My throat was nearly closed completely. All I could do was squeak in some air. My husband heard me and jumped out of bed to try to assist me. I was in a major panic. I could only get 3 or 4 words out at a time...very squeaky sounding. I tried to tell him to give me a puff of air while I was heaving for every tiny breath. He thought I meant from the trilogy. It had been disconnected due to having our house in disarray after a hot water heater rupture. So I was waiting, gasping...I thought dying...while he detangled the trilogy from the lamp and all the other stuff on my nightstand that was across the room from me. It was taking too long to get it all set up and what I was trying to tell him anyway was to give me a puff of air.....as in CPR. It was THAT BAD. Has anyone else ever experienced this???? I wasn't coughing or choking and it lasted what seemed like an eternity but probably a minute to minute and a half...maybe longer I just really have no idea. I do know if it had gone on much longer I would have wanted to just go ahead and pass out. Then when it was over it took 3 or 4 labored breaths to get back to normal. By this time he was handing me the trilogy mask and I told him I wanted to wait. I never used the trilogy after the incident for fear of it triggering another episode.

After it was over my voice was affected as if my vocal chords were severely strained. It went away after awhile. The only other thing I noticed was thick saliva down in my throat. My husband thought it was caused from drainage. It's never happened before. I'm scared and stumped.

I did get choked on my saliva a several months ago and it cut off my wind too...but I was choking and coughing at the same time and during that episode I could breathe easier though my nose before it subsided.

My FVD was at a 66 on last clinic visit on Aug 8th. I still eat anything I want but have noticed a early signs of speech problems (feels like my vocal chords are tired after talking a lot). I'm beginning to slur slightly...although my husband says he hasn't noticed. My voice also sounds a bit weaker. Other than that I had limb onset. looking back I believe my symptoms started in January 2015.

I'm scared to go to bed tonight. Seems like I remember someone talking about throat spasms or esophageal spasms with ALS?

Please help! Any info would be greatly appreciated.

Thank you,
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Old 10-14-2016, 07:12 PM #2 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Sorry you went through this. Search for laryngospasm

This is one thread which has advice on what to do but there are more
Throat spasm (?) vs. choking
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Old 10-15-2016, 12:12 AM #3 (permalink)
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Default Re: Throat closed off? Had NO AIR!

This is the sort of question we would ask the respiratory therapist at the multidisciplinary ALS clinic, who is always very good about answering emails and discussing them with the neurologist. My wife had a similar experience, but I don't remember what the treatment was. However, since the most perplexing respiratory symptoms always seemed to happen at night, we always made sure we had email and text message access to the RT.
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Old 10-15-2016, 03:40 AM #4 (permalink)
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Default Re: Throat closed off? Had NO AIR!

I'm so sorry, how frightening!

It does sound like a laryngospasm.

If you had passed out, the good news is that would probably have caused the larynx to stop spasming, but I must say I can't really imagine going through it.

My Chris had tiny laryngospasms as one of his early symptoms, and they did become more severe. He learned to stay very calm during the episodes to help the larynx come out of the spasming.

His never seemed to be triggered by anything in particular, they would just strike.

If your husband can learn to stay calm and help you to concentrate on breathing slowly with him, that usually helps the spasm to pass more quickly.
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Old 10-15-2016, 03:07 PM #5 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Thank you all so very much. I looked up laryrngospasm and no doubt that is what it was. I am also happy to report of a Dr. that came up with a "maneuver" that decreases the duration or ends it. If anyone is troubled by this please look up Larson Maneuver. My husband now knows how to do it now...VERY SIMPLE. It is also something you can perform on yourself. I think I will do a post on it tomorrow when I have more time. It's a horrible thing to have happen. I'm sure my first one won't be my last...so at least I have some comfort knowing what it is now and what I can do to possibly make it stop.

Thank you all,
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Old 10-15-2016, 04:18 PM #6 (permalink)
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Default Re: Throat closed off? Had NO AIR!

I so wish I had known that one!

Thanks for sharing this tip.

Definitely it helps to know what is going on, the first really big one Chris had was so frightening for us both. Once we go through the first couple, while they are still frightening, as you say, knowing what it is becomes half the battle to dealing with it.
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Old 10-15-2016, 05:10 PM #7 (permalink)
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Default Re: Throat closed off? Had NO AIR!

About a year before my ALS symptoms started surfacing, and continuing until the present, I have this condition where my throat closes for a second or two. This is always caused by a smell, be it perfume, cooking, etc., or simply dry air. After a year, I finally went to a taste and smell clinic for evaluation. After months of testing they labeled it laryngeal spasms. These spasms, remember, only last a second or two. However, starting this past summer, I get an itch/tickle in my throat that closes it off for up to a minute. I try to cough it out, but I find that only aggravates it. Scares both me and my spouse. I now keep a throat spray handy when it happens. It deadens the itch/tickle. I'm not sure if this is replicates what you suffered, but I empathize with you.

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Old 10-15-2016, 06:24 PM #8 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Duke the tiny laryngospasms were one of the first symptoms I noticed with Chris. He had noticed other things, but they would happen many times every day with no trigger that we could pin down. They were just like a funny little cough/twitch in the throat, very mild.

Interesting that the spray you use helps, but it makes sense too because it would relax the area. Tensing up and panicking increases the spasm, so anything that can help relax it will help it pass faster.

I really hope that pressure point method will help a lot of PALS!
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Old 10-15-2016, 06:54 PM #9 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Hi Duker
Would you mind telling us what throat spray you use. I have been getting that itch/ tickle with a little pull in my throat for the last couple of weeks. I had dismissed it as being nothing to do with mnd as I had not had any symptoms in that area up until now, but you have described exactly what I am feeling! If the throat spray helps I would like to try it as the feeling is unpleasant.
I think mine has started since the weather got colder and the central heating kicked in making the air in the house drier.

Wendy x
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Old 10-15-2016, 08:23 PM #10 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Hi Duker. We too would like the name of the spray you use. My husband gets laryngospasms from ice cream or hot coffee. Since he likes coffee for breakfast he switched to drinking cold Starbucks mocha latte (with a shot of his favorite Baileys or Kahlua) Ice cream he just avoids unless its a melted puddle or soaked into cake.

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Old 10-16-2016, 06:02 AM #11 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Wendy/vw-fl, the spray I use is Chloraseptic. It's OTC and in every pharmacy. It has a numbing agent in it that immediately calms the itch/tickle. Hope this helps.

Bill
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Old 10-16-2016, 06:08 AM #12 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Thank you Bill
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Old 10-16-2016, 01:50 PM #13 (permalink)
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Default Re: Throat closed off? Had NO AIR!

Larygospasm is a horrific feeling of impending death. The good thing is that since we don't die after the first few, we realize that it is over quickly in real time (even though not in the perception of time while we experience it!). It can occur from irritation from food or drink, cold or dry air, saliva, or no reason at all. The Larson maneuver CarolSue talked about is used by anesthesiologists who encounter laryngospasms when trying to intubate patients. That is enough proof of its effectiveness for me! I haven't had any laryngospasms since being trached so I can't try the Larson Maneuver but would definitely advise others to add it to their skills. Laryngospasms aren't fatal, but a PALS would certainly be glad to have them cut short before they hit the unpreventable adrenaline loaded panic that is a built in part of our nervous system. Reading about how to do the maneuver isn't very helpful. Check out the very short video on YouTube!
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