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Twitcherama

Active member
Joined
Jan 20, 2016
Messages
64
Reason
PALS
Diagnosis
12/2015
Country
US
State
New Jersey
City
West Orange
Hi all,

In the past week, I've developed some serious coughing problems at night, to the point that I'm not sleeping well at all. I'll have little coughs, and when I try to take a full breath in, I only get a bit and have to cough again. As for the gagging, it's hard to describe the sensation, but at times I'll gag like I'm about to throw up. Occasionally I do. All of this coughing has made my throat sore. What is this all about? Are my swallowing muscles failing? Breathing issues?

I have a Cough Assist and I'll admit I haven't been using it much. I'm now trying to be good and use it three times a day. Should I be using the suction machine more than the cough assist?

At night, I take Mucinex expectorant, and that has alleviated choking issues that arose months ago, but it's not helping the coughing fits. The doctor suggested moving to Robitussin expectorant, but it's a liquid and I just can't get it down. It burns; way too medicinal.

I'm on year 2 post-diagnosis with atypical, slowly progressing ALS. Full body fasciculations but mainly bulbar issues. Arms and legs are starting to weaken as well.

Any thoughts are appreciated!

Thanks,
j
 
Do you have a feeding tube?

My PALS has Bulbar onset. In the very beginning, he did alot of coughing. His pcp gave him a prometazine with codeine. That helped him. Now he has some coughing but it seems to coincide with eating and drinking.
 
Neither the CoughAssist nor suction is a substitute for BiPAP if you need it...have you had PFTs done lately? Headaches/fuzziness/irritability/dozing? Humidification, cough drops, codeine, an ice cube, etc. are all worth trying to the extent that your swallowing allows. The gagging is probably retained gunk and worth keeping a food diary to see if there are triggers.
 
No feeding tube, no bipap yet. I can only take in liquids, though. Chewing is an ordeal. My doctor gave me a prescription for something (it's a long name, can't remember it right now) that might work as an expectorant and help dry up some of the secretions. It seemed to work last night. Was finally able to get some sleep. Not perfect, though, and still some coughing fits during the day. I'm seeing my doctor and his team in a week, so will get a better handle on it then, I hope.

Also, I don't think I've had a PFT yet.
 
If you are only doing [certain] liquids, I would definitely consider a feeding tube, and if you want to go for it, bring it up next week (as well as respiratory function testing/BiPAP).
 
Well, I don't really want to go for it, but I think it's prudent. I'm holding off on breathing devices (aside from the Cough Assist) for as long as possible.
 
Fair enough, but you should know that there is a tipping point for BiPAP; if you wait too long, you will not be able to benefit as much.

Best,
Laurie
 
Saw my neurologist yesterday. He didn't feel a BiPAP was necessary yet, so that's good. But, we all agreed it's time for the feeding tube. It'll make life so much easier. So that's next.

Maybe this is in the PEG section, but do you look for specific qualifications in a doctor to have it done?
 
1) It is a pulmonologist who is most qualified to recommend BiPAP in equivocal cases such as yours.

2) An interventional radiologist experienced in performing this procedure in neuromuscular disease is recommended. Your clinic might have a referral (which might or might not be the best in your neck of the woods, but worth checking out) and if you tell us what academic medical center(s) are most accessible to you -- Newark? NYC? you can get more focused recommendations.
 
Newark, NYC, Morristown, basically anything in north Jersey or the city. I'd prefer not to do the city, but I would if it's the best option. The clinic didn't have any recommendations for someone in my area.
 
I'm sorry, which clinic are you going to? Without looking it up as yet, I would think that UMDNJ or RWJ would be top IR picks -- but you are not going to either?
 
It's the Mt. Sinai/Beth Israel Neurology clinic. They have recommendations for in the city, but I'm hoping to do it out here in NJ. UMDNJ is closer. RWJ would still be fine as long as I don't have to talk to their ALS clinic head.
 
Laurie....just reading along here absorbing information for my PALS as he has coughing issues as well. I just want to say thank you for all the extremely helpful information you share will all of us here. You really are a Godsend.
 
I have a very similar problem with coughing fits and gagging. I've looked everywhere on the internet for anything that might help. I would get choked on saliva and it would cut off my air for a bit. Very scary. When your air is cut of for several seconds and can be up to a minute...it is called a laryngo spasm.

In my research I found some info about Neuropathic Sensory Cough or Neurogenic Sensory Cough. It is when you have an intense tickle in your throat or can be another type of trigger resulting in severe coughing fits which can include gagging, vomiting and in severe cases a laryngo spasm. There are meds for it. I was at clinic last week and mentioned to the Dr. He prescribed
amitriptyline and it worked. Only problem is that I had some side effects and now waiting on him to switch to a different drug. I remember there being 4 drugs total that they can try.

Hope this helps,
CarolSue

If you ever have a coughing fit and can't get air, always breathe slowly through your nose. There is also a technique called the Larson maneuver you can try. Google it...there is an explanation and video.
 
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