Air going down the wrong pipe?

Status
Not open for further replies.

dkcarl62

Distinguished member
Joined
Nov 12, 2014
Messages
220
Reason
DX UMND/PLS
Diagnosis
03/2015
Country
US
State
mi
City
Novi
I hope you can help me understand what's happening to me. I can't even explain it very well. I get these episodes where it seems like I'm swallowing air and liquid at the same time. There is a period of about 15 seconds where I can't breathe and I make this really weird sound when I struggle. I don't choke. I always burp afterward, which makes me think I'm swallowing air. Mini Laryngospasm? I've had those and they last longer.

Is this just one step closer to peg tube surgery?

Deb
 
What is your activity prior to these episodes? Are you eating or drinking? Are you laying down?
You mentioned wondering about a feeding tube. I have been equipped with a MIC-KEY for over a year and didn't really use it until six months ago for liquids. Food is okay for me to swallow as a puree. I am careful to swallow with my chin down to protect my airway.
 
Hi bkite. I am sitting and drinking when it happens.
 
Okay. Several things to try with this problem. Try drinking with a straw, keeping your chin down and facing straight ahead. Hopefully this works for you. If you still choke on clear fluids, start adding a thickener to them.
Hang in there!
Bruce Kite
 
MND can lead to incomplete opening/closing of the glottis (entrance to the throat) so coughs, swallowing, etc. may be affected. One consequence may be "swallow apnea." Sensory deficits in that area may further complicate drinking. Finally, an upper motor neuron sign is a hyperactive larynx, and I know you have been dx'd with UMND. I've attached a paper that says this and a lot more.

If drinking is more problematic than eating, as Bruce says, you may want to start thickening liquids. I've found overall texture (not just thickness or chunk size) with different foods/liquids is a big determinant of what causes problems.
 

Attachments

  • RespiratoryComplications.pdf
    124.3 KB · Views: 592
Hi dkcarl62.

A consideration for the cause of your symptoms would include Aerophagia or air swallowing, which can occur during eating. If you frequently feel bloated, burp a lot, or suffered from flatulence then this would be a possibility. If this is the case, speak to your ALS Center’s speech pathologist who might be able to offer you some guidance.
I think it would be a good idea to undergo a swallowing study to better define exactly what is going on. Ask your center’s speech pathologist to recommend which study would be best in this matter.
Check the following website for more information:

http://www.medscape.com/viewarticle/776875_4

Best wishes

Eliot
 
Thanks for your reply, Eliot. I wasn't able to use the link provided - its asking me to sign in. Do you have an opinion about what the actionable result of testing would be? If theres nothing that can be done, a swallow study just satisfies an intellectual curiosity. The "event" that occurs only happens when I am drinking, not eating. Do you still think it could be tied to Aerophagia?

Deb
 
Hi dkcarl62

Please review the last to sections of the following website: Speech and Swallowing Issues with ALS - Massachusetts General Hospital, Boston, MA

The modified barium swallow discussed in the next to the last section might help the speech pathologist identify the cause of your symptoms when swallowing liquids. This approach could help identify the cause of your symptoms and an experienced speech pathologist may be able to employ various strategies to relieve or ameliorate your symptoms. So there is the possibility that such a study might be actionable and if your symptoms continue to persist I think it's worth the effort. My approach when faced a problem such as yours is to invest in defining the cause of the problem especially when you have nothing to lose and possibly a lot to gain. Although the website above is focused on bulbar symptoms I think the investigation recommended on the website make sense to me because it offers the possibility of identifying the presence of various types of swallowing dysfunction, some of which may be actionable.

Best wishes,

Eliot
 
Excellent link and suggestion, Eliot. I read the details on the MBS and it is an easy and non evasive test. You're so right, can't hurt, might help. Thanks for writing. Your information was also helpful, Laurie. (although your link was a bit too academic to sink in entirely. :)

Deb
 
Deb the MBS we had done for Chris were very useful.

They did not give him the same things to consume each time, as he progressed they were giving him different textures and looking at things differently.

So they are a helpful test to figure out just what is going on and help form the correct strategies for you.
 
Status
Not open for further replies.
Back
Top