Thick secretions in the back of my throat

[Alex123]

Jenny, I haven't found anything to help with my secretions. My opinion is that there is little knowledge about this and why it happens.

I am not using a suction machine. The total volume of my secretions per day oscillates between 400ml and 600ml. I spit on a little plastic container and then transfer it to a 1000ml graduated plastic beaker. I keep a log of my daily volume of secretions.

While the daily volume has stayed more or less the same, the consistency seems to have improved a little.

I have the feeling that my secretions don't come from my nose or sinuses. Looking at a drawing of the throat, I have seen that the upper part of the pharynx there is something called "adenoid tonsil" which is a lymphoid tissue. See https://en.wikipedia.org/wiki/Tonsil . I suspect that the thick salty secretions may be coming form there or from the sphenoid sinus, which is above the adenoid tonsil. My secretion has some whitish thing in it that I think may be epithelial cells. Have you seen something like that in yours?

Also my tongue is covered in a white plaque. Does yours look white? I was tested for candida but it came back negative. Well, maybe I am getting too technical here and you were just interested in finding something to improve the symptoms. With respect to the "balance" that Igelb mentions in her response to your post, I was not too clear as to what she meant. But the "balance" that I have seen having some meaning is between too thick or too thin. If they are too thick, they are impossible to swallow and very hard to cough them out. If they are too thin (liquid) they can be aspirated and go all the way to the lungs. At the beginning, I had been prescribed Robinul, which did diminish the volume of secretions. But it was making them too thick and I was having more trouble at night. So I stopped taking it.

When I cough to clear my throat, the phlegm/mucus goes all the way up towards the back of the nose instead of going out through my mouth. I takes a lot of effort to cough it out. I think that when that happens, my secretions increase. Also I have seen increases when I have had lung function tests, and when I blow my nose or if I sneeze. On the other hand if I lay in bed (on my side) and rest, it gets better. During the night I am not having problems because there is little production of both the thick mucus and saliva.

 

[Alex123]

Lurie, It took me a while to understand the "balance" you mention. But now after reading it again I think I understand. You mean that if the secretions are thinned by increasing hydration, then the production will increase and at some point that can counterbalance the benefits of it being thinner.

 

[Fpm3]

I have used Mucinex and found it to be very effective. I tried it for the same reasons as mentioned - just as good if not better than a script and less side affects. Also, I just heard about pineapple juice at the Polar Plunge for ALS in Manasquan, NJ this weekend and looking forward to trying it. I want to use as many natural remedies as possible to manage my symptoms.

Frank

 

[bigmark1954]

I use cough drops to break up thick mucous in my throat. It seems to help making it more manageable. I do not have a peg and suffer from dry mouth due to meds.

On days that I have excessive thick secretions I use Mucinex, it seems to reduce the quantity of my throat mucous.

Our beloved MAX uses Mucinex twice per day, at least he did last time I checked.

 

[jennyinfrance]

HI Alex, thank you for getting back to me. Where you described it is coming from is the same for me. I have found a way of getting it into my throat: If I lean my head down between my legs, then I can suck it up into my throat and either spit it out or suck it out with the pump. I sometimes wonder if the pump is making the secretions worse. If I don't keep on top of the secretions, I seem to have an escalation of the fluids which is very distressing. I sneeze violently and have bitten my tongue badly in the process. There is fluid coming from my nose, eyes and mouth. If the secretions are too thick, I have been in the situation where a thick lump has lodged (presumably my windpipe) and I could not breathe. It is very distressing. I also have had 3 chest infections in the past 6 months. You spoke of white bits in the secretions. I also have these. The secretions are quite sticky and have little bubbles in them. I also had candida at one stage which was hard to shift but I managed after a long treatment. I can no longer swallow so there is always a build up in my mouth which I find repugnant. I have coped with not being able to speak or eat well but this is very hard to deal with. I had botox by the way, which did not help at all. I have tried amytriptiline, scopoderm patches, atropine drops, but nothing helps. I have heard that all this stops after a trach - does anyone know if this is true? I really appreciate any suggestions.

 

[Alex123]

Jenny, I don't know enough about what happens with secretions once you get a tracheostomy, but regardless where the secretions are coming from, it doesn't seem possible that the tracheostomy would have any influence on their production. Maybe it prevents secretions from the throat, nasal cavity and saliva to go down the windpipe, but those secretions would have to me pulled out somehow anyway. Unless they just accumulate and it becomes easier to swallow them without risking aspiration. On the other hand, secretions from the lungs I think need to be suctioned. From what I have heard after you get the tracheostomy you need help 24 hours a day. Maybe someone with more experience can give us better orientation.
I may be wrong with this, but at least in my case, I don't think tracheostomy at this time would improve my quality of life. I think it would be the opposite.
I also wonder if it is not possible for this increase in secretions and change in consistency to normalize at a later stage of the disease.

 

[Inventor]

A couple of weeks ago I got the idea to mix 300 mg of acetylcysteine with 50 ml of saline in a long-nosed spray bottle (meant for dental care). Ten pushes of the mix into the mouth through the hose penetration of the bipap mask will melt all the thick stuff it touches. I can still swallow to a degree so it helps in the throat as well as the mouth.

 

[Alex123]

A couple of weeks ago I got the idea to mix 300 mg of acetylcysteine with 50 ml of saline in a long-nosed spray bottle (meant for dental care). Ten pushes of the mix into the mouth through the hose penetration of the bipap mask will melt all the thick stuff it touches. I can still swallow to a degree so it helps in the throat as well as the mouth.

Inventor: would this be equivalent to doing it with a nebulizer? Also, I didn't quite understand the way you did it with the BiPAP. Thanks for sharing this with us and if you explain in more detail how you did it I think it might help.

 

[Alex123]

I have commented to different doctors the fact that my secretions have some white clouds in it that appear to be cells. But none of them showed any interest and told me that there was no test that could be done on my secretions. I suggested a cytological examination but they said it would not provide any useful information.
As I am everyday looking at that white stuff without knowing what it is, I decided to buy a microscope and look at it myself. It may not help, but it'll be an interesting experience using the microscope. I haven't gotten the microscope yet, but when I get to the point of looking at my secretions, I'll post here what I found (If I found anything).

 

[KylieP]

Forbes Norris recommended Mucinex (but the generic kind) and it absolutely helped. My PALS is not on a trach so uses a cough assist, which has been a god send. It clears all his thick mucous out perfectly. Not sure if it can be used if someone is on a trach but definitely worth looking into.

 

[pittsburghgal]

My PALS has a trach and uses the cough assist machine. It attaches to the trach.

 

[carex]

I'm Bulbar Onset, diagnosed last fall. I identify with nearly every preceding post... orally expelling heavy white stringy mucus like substance which has only been getting worse over the past several weeks. I also have a Peg tube.

I use a cough assist to force extraction every three/four hours (day & night). Usually six or eight coughs, some are often so thick I can no longer inhale without swallonjng the whole mess. Then I go to the sink and manually 'rake' the phlegm from my mouth with a tooth brush. Sometimes stringy ropes drool from my mouth and I need to roll them up with the tooth brush like you would spaghetti. Tying to pull them straight out, they just stretch and won't come away. Then I return to the assist for second series of 6/8 coughs which generally is a repeat of the first series and then back to the sink for another raking of the (complete) mouth interior. I can't gargle, but carefully sip a small amount of 'warm' water and slosh it around my mouth best I can. Seems to help. By the third assist series, the phlegm is nearly all gone. A final raking and warm water rinse followed with a non alcoholic mouth wash. Again, just sloshing it around... No gargling.

Then off to the suction machine for a final cleansing of the mouth. After which I put on the BiPap machine for the next three or four hours... when it's time to start all over again.

This routine has evolved to a 24 hour ordeal. My doctor(s) Seem to think this is a Saliva oriented condition
I do have an appointment with an EMT next week (04/16) regarding Botox injections into the saliva glands. I'm told the the initial injection takes about a week to take effect. The treatment should last a welcome two to three months before additional injections are required.

I'm going to try the Mucinex tomorrow morning.

Can't think of anything else at the moment. Sure I'm forgetting something.

Toodles, Bob

 

[Alex123]

Bob, Botox is the last thing I would try as saliva does not seem to be the main problem. I think doctors are biased in favor of Botox. Please let us know if you notice some positive effect from Mucinex.
I wonder, what happens if you lye in bed sideways, put a towel on the pillow and let the saliva drool down on the towel for some time? In my case, when I do that production of secretions decreases.
I have also noticed changes over time in the consistency and quantity of secretions. This change has been without making any changes in anything else or taking any medications.

 

[carex]

Hi Alex,

Firstly I need to revise an earlier statement. I had misinterpreted the Drs. statement. The Sylvia is not the source of the heavy thick secretions. Like others had mentioned, it seems to be of a spearate source. It appears to be nasal/sinus related. So there are two different things happening simultaneously.

Secretions are/were still happening as described earlier. I did try Mucinex Sinus-Max (severe congestion relief)... just happened to have a bottle around from a need last year.

I added the recommended dose at the last peg feeding two days ago. That night my throat dried up almost immediately. Part of that because I have no control keeping my mouth closed. I use a brace when I need to. But... I did not have to perform the 'raking' exercise every three hours after the dose. When I finally did perform the raking 12/14hours later, the volume of mucus was easily half of what I had been experiencing. Only had to do two sessions vs. the three.

Took a second dose of Mucinex at my next lunchtime feeding. My throat didn't go 'bone dry' like it had after the first dose, but the end result was still the same. About half the mucus volume. So, at the moment, I'm fairly pleased with this result. Tonight at the last feeding of the day we are implementing a dose at every feeding going forward with the Drs. blessing.

Understand that both problems still exist, but mucus secretions, so far, have been halfed. I have tried everything else, drops, patches and scripts for the Sylvia flow... with no result at all.

I understand that the levels of Botox can be adjusted. That is to say 50%, 75%, left side only, right side only... or both sides. My appointment at the Tampa VA has been pushed to the 26th. My (local) VA Clinic Dr. advised that Tampa will go thru all the motions before anything happens. So there is still time/option to back out. And there is still two weeks before the appointment if in the event some miraculous event takes place... LOL.

I think that about covers it... so far. Keep in touch and I'll keep you posted.

Thanx for your input.
Bob.

 

[Alex123]

Bob, thanks for keeping us updated and I am glad to hear that Mucinex is working for you. I will try it to see if it has some effect for me.
With respect to the Botox, It was mentioned to me last time I went to the ALS clinic, and I am sure they will sugget it next time I go. But one of my concerns is my mouth getting too dry. I hope it works for you.