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Alex123

Distinguished member
Joined
May 31, 2014
Messages
128
Reason
PALS
Diagnosis
05/2014
Country
US
State
California
City
Los Angeles
I have had thick, salty secretions in the back of my throat for some time. Some times saliva also gets thick. When saliva is not thick and the secretions in the back (I think they come from the nasal cavity) are not too thick, I can swallow the saliva and it carries some of these thick secretions into the esophagus. But most of the time during the day I can't swallow it and I have to spit. I have bulbar-onset ALS and am currently on a PEG tube.
During the night secretions get thinner and I can swallow them, although some times they get into my trachea and I have to cough. I understand that it is common for ALS patients to have problems with excessive production of saliva, but in my case what makes the problem worse is the thick, sticky, stringy consistency of those secretions. When the ENT looked with the scope through my nose, she said she didn't find anything. When went to the last ALS clinic, they gave me some nasal sprays, acetylcysteine through a nebulizer, and an antifungal medicine. None of that worked. I would have preferred they tried to find out first from exactly where the secretions are coming from and what is the cause. I understand this may be a strange effect of ALS with an unknown mechanism behind it. But it could also be something not directly related to my ALS. While I have heard of people with ALS having excessive saliva, I haven't heard about thick secretions. I wonder how common or rare it is to have these symptoms with ALS and if anybody is having the same problem how they are managing it. For me it is being quite annoying. One more detail: I typically spit about 500ml of secretions and they have an abundant quantity of some white stuff that has a tendency to settle at the bottom of the container. This white thing I believe may be epithelial cells, but I don't know where they are coming from. I'll appreciate your input.
 
I can relate. Most of the time I have a dry mouth, even before the ALS diagnosis and have always had thick, rope-like saliva. I'm hoping this will lessen the chance of saliva aspiration. My dentist says it's not good for my teeth and wants me to use biotene every day but I guess it's better than excessive drooling.

Vince
 
Hi Alex welcome back. Sorry your diagnosis was confirmed. Are you back in the US now to stay?
The thick secretions are pretty common I think and there should be several threads. Try a search for mucus maybe?
 
Lots of fluids to keep you well hydrated may thin the secretions out. Often people think that because they have all this saliva or mucus they want to drink less to help it, but the opposite is actually true.

Knowing if it is mucus or saliva would help. (yes you know that too, just commenting lol)

Many people think they are producing excessive saliva once their ability to swallow diminishes but the normal amount of saliva produced each day is around 2 litres. So if you are having trouble swallowing it can seem like there is this huge amount of saliva suddenly.

Do search here for more information on what people have done to help thin out saliva and mucus so you can try some of these strategies.
 
I can relate. Most of the time I have a dry mouth, even before the ALS diagnosis and have always had thick, rope-like saliva. I'm hoping this will lessen the chance of saliva aspiration. My dentist says it's not good for my teeth and wants me to use biotene every day but I guess it's better than excessive drooling.
Vince
I call it secretions instead of saliva because I think the thick part comes from the back of my throat and in that case it is not saliva. Now, if both those secretions and my saliva get too liquid, then I do have a tendency to aspire them. But when they get too thick I can't swallow them. So there is like a middle point in the consistency that allows me to swallow it without aspiration.
In the last weeks I have had less problem at night, but before that I often had to get up and cough out what I had aspired.
What you describe as "rope-like" is a good description of the way my secretions from the back of the mouth feel. My saliva can get thick also but not to the point of being rope-like.
Is it possible that what you think is saliva is actually coming from the back? I still don't know if mine is coming from the nasal cavity or produced there behind the soft palate. It could also be that those secretions are being produced by the back of the tongue.
Right now I am not taking any medication. When I took Robinul it diminished the amount of secretions but made them thicker, which didn't help.
Something interesting is that you had these symptoms way before the typical ALS symptoms appeared. That may be something that the doctors should pay more attention to as it is possible that ALS (or the different diseases that we have been calling ALS) starts many years before and it is a long process that affects other parts of the body before it affects the motor neurons.
 
Hi Alex welcome back. Sorry your diagnosis was confirmed. Are you back in the US now to stay?
The thick secretions are pretty common I think and there should be several threads. Try a search for mucus maybe?
Hi Nikki. I came back in January last year to stay. I will look for other threads about thick secretions. Thanks for the advice.
 
Lots of fluids to keep you well hydrated may thin the secretions out. Often people think that because they have all this saliva or mucus they want to drink less to help it, but the opposite is actually true.
Knowing if it is mucus or saliva would help. (yes you know that too, just commenting lol)
Many people think they are producing excessive saliva once their ability to swallow diminishes but the normal amount of saliva produced each day is around 2 litres. So if you are having trouble swallowing it can seem like there is this huge amount of saliva suddenly.
Do search here for more information on what people have done to help thin out saliva and mucus so you can try some of these strategies.
Hi Tillie. I haven't found a connection between my state of hydration and the consistency of my secretions. On the other hand, interestingly, there is a connection with the time of the day. During the night the consistency changes and it becomes more liquid. Once I noticed it when I fell asleep while watching TV in the living room. I haven't done the experiment, but I suspect that it is the light during the day that changes things. I could cover my eyes for 30minutes and see what happens. Now, I had read before some doctors saying that there is no increase of saliva production in ALS but just greater difficulty swallowing it. I suspect that even the difficulty swallowing plays a role, they don't have sufficient evidence to deny that more saliva is being produced. In my case, I am not so concerned with the amount of saliva but the change in consistency. Even if hydration could help, I know that dehydration is not the cause. I have read about cystic fibrosis and the symptoms are similar, including the fact that those secretions are salty. But even the process may have something in common with cystic fibrosis, I don't have the mutation that causes that disease. I also suspect that the mucus in my lungs may be getting a little thicker. But when I cough out from the trachea, it is hard to know if the "phlegm" came from the lungs or from aspiration. So I'll keep investigating about this. I have tried to get information on how to make mucus thinner, and I tried Mucomist and another medicine that I can't remember the name. They didn't help much. Thanks for the advice Tillie.
 
That's where it helps to know if it is thick stringy saliva, which is usually hydration, or thick mucus from the back of the nose.

When Chris's bulbar symptoms started, and his speech was only lightly slurred he had a lot of trouble with mucus and a CT of the sinuses showed that he had a mild sinusitis. Now, whether this was from another cause, or whether it was a reaction to the changes happening in his palate and the muscle tone in his face I don't know.

It did ease off for him as his speech and swallowing became worse, and he then had trouble with his saliva.

I'm sorry, that doesn't necessarily help you, but thought it worth mentioning.
 
Tillie, my stringy secretions I am almost sure that are not saliva. But still I don't know if they come from my sinuses, or they form in the back of my nose or a little lower than that, such as the back of the soft palate. I also suspect that they could come from the back of my tongue. As these secretions in certain circumstances seem to be produced continuously and in large volumes, I have a hard time believing they could be produced at the mucosa of my throat or my tongue, but maybe the cells of the mucosa have the capacity to do that. On the other hand, if it came from the sinuses, it would make more sense, as the sinuses have a larger surface and can accumulate the mucus too. But my ENT told me that my maxillary sinuses show clear in the CT. The thing is that that CT did not go all the way up to the frontal sinuses. She thought it could be a direct consequence of ALS, but she did not know the mechanism by which this happens (at least she was honest). Form what I see so far, it looks like some people with ALS do get stringy mucus, but it doesn't seem as common as the saliva problems. Even with saliva, the problem most commonly described is drooling and apparently excessive production (sialorrhea) rather than changes in the consistency. I wonder if changes in consistency are uncommon or are not paid enough attention and then are most of the time not mentioned.
When I consider the possibility that this mucus is produced by the back of my tongue, I also wonder of the anomaly may not be some changes in the mucosa tissues caused by the death of muscle cells. After all, when a cell dies, there must be a lot of changes around it in order to clean it up form the tissue. Something that would support this idea is the fact that muscle cells in my tongue are dying as my tongue is getting atrophied. It is useful for me to know that the thick mucus symptoms in Chris did subside. I have thought that if my problem is caused by muscle cells that are dying, once they all die, my thick mucus symptoms might also improve. I will try to keep hydrated, although I suspect in my case it will just prevent the problem form getting worse but will not solve it. Tillie, I appreciate a lot your willingness to help.
Alex
 
I have bulbar onset. I use sudafed nasal spray which helps with mucus/phlegm I also use Atripine eye drops which I put 2 to 3 drops on my tongue, this dries up my mouth for up to 3 hours. Gives me a break from the saliva.
 
My PALS has been taking Mucinex (the regular 600mg guaifenesin form) twice a day and it definitely helped before he went on BiPAP near 24hrs/day along with Afrin extra moisturizing (he had a prescription nasal spray but he's very particular about smells and didn't like the way it smelled so we went back to Afrin). I asked his doc if there was a script he would recommend over the Mucinex to help reduce the saliva/ropy mucus but he said that Mucinex or Robitussin is just as good if not better than a script and would have less side effects. The BiPAP seems to have made the mucus/saliva worse though, probably because he isn't drinking as much and in his case the water did help too.
 
Thanks Dougieconnor for sharing this information. I'll keep it in mind and perhaps give these meds a try.
 
Thanks Sheepthechicken. It is interesting to see that there are other people that also have ropy mucus. So it looks like it is not that infrequent in PALS. It is strange that it is never mentioned as a symptom of ALS in any articles.
I was thinking that it could be something separate from ALS (such as an infection or cancer) but now I am starting to think otherwise.
I have taken Mucinex before but it didn't help much. But maybe the dosage I took was too low. So I may try again.
 
Hi, I have bulbar onset ALS. What you have described is exactly what I am experiencing. I have a suction pump which I use constantly. It is ruling my life. I am lucky that I do not have any weakness in my limbs. I have a peg tube and cannot speak but find it hard to go anywhere because my secretions are so bad that if I don't keep on top of them, I become distressed. I wonder if you have found anything which helps? I agree this is not a saliva problem. The mucus is very stringy and I can actually pull it out. It has a foul, salty taste. I'm sorry I don't know when you wrote your message but look forward to hearing from you.
 
We used papaya tablets, esp. around meals, to thin the secretions; some people use pineapple/papaya juice; I think coffee helped as well. And Luden cough drops, for those who can still use them safely.

As the literature points out, it's a balance between thinning it/being hydrated and too much of it pooling.
 
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