Saliva ang phlegm

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Bert Kowaltschuk

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Saliva and phlegm

Hi group;

I'm having a serious problem with saliva and phlegm to the point where I'm afraid I'm going to have a terminal choke one day. I have surges of saliva all day and regular choking on phlegm incidents, especially in the evenings.

I take Desipramine at bedtime and use Atropine drops during the day without much success. I also use a suction pump when it gets really bd but it just seems to stimulate more saliva.

Can some of you who are also dealing with this problem relate to what you are using to control saliva that seems to work?

Bert K
 
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johnnyd

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hi Bert

Morphine and bi-pap at nigh helps me. But I don't know how much time I have left. I stopped fighting it and just let it drool.

John
 

TBear

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Hi Bert:
As I recall, any of the elavils (anti depressants will do the trick) My wife used amitryptylene. In addition, there is an over-the-counter motion sickness patch that is supposed to help. Transderm-V. The amitryptylene is a prescriptions med... the transderm is not... but I think it wise to check with your doc before trying it.
 

Bert Kowaltschuk

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Thanks John and TBear for your input. I've discovered if I manipulate the desipramine dose and adjust the timing it helps. Also discovered that taking an antiinflammatory along with the desipramine increases the effect.

Bert
 

mannco74

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Phlegm

am trying Papaya but can not yet tell if there is benefit. Have suction but unable to get stuff to come up high enough. Oh ya, I am diabetic so cant have many carbs (Beer is a necessary food group though)
 

Jan

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Bert k.,

i have been dialing with als 2001 (bulbar). yes, the salvia is a problem and onces an a wild dries. i go to johns hopkins and they have me on robinul. it does work but it can dry you out. plus, i have atropine sulfate drops(eyedrops) that i put under my tongue.

i have a question for you is your gums sore and tongue a little swollin? i keep asking the professional and they just say its not from the als.

the whole thing is craze..but we must not give up hope. bless you all for sharing your time.

jan
 

Al

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Don't know if it is the riluzole or the baclofen or the amitriptyline or the bipap but i get up with dry numb lips that last for hours. strange thing though my mouth is as dry as the desert but i still manage a bit of drool every night in my mask. go figure.
 

mannco74

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phlegm

i now use glycopyrolate and if i begin to choke i have a morphine butter fly
 

lhart

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Hey al,
i've been on tHe bi-pap for six months now and have tried everything to lessen tHe desert mouth. nothing works completely, however you do get used to it. tHe first thing i do every morning is "swish and spit" water for about five minutes to get tHe juices flowing again, tHen spend tHe rest of tHe day spitting. one thing that does Help me is chapstic on tHe lips before bed, at least my lips aren't dry in tHe morning and for some reason in makes tHe drymouth not as bad. i have a humidifier hooked up to my bipap, but i don't think it does much. i find with tHe bipap i sleep with my mouth wide open which s something i never did before, but i sleep well, so you take tHe good with tHe bad i guess. just one more thing to get used to.
les
 

lhart

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One more thing, the riluzol does cause numbness. if you've ever had a pill stick in your mouth or throat you'll know what i mean. it almost feels like novacane. i take it now through my feeding tube just for that reasOn.
les
 

Al

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i have a heater on the humidifier that puts more moisture in the air but i don't like the air too warm so i keep it set fairly low. now that you mention it i did get a riluzole stuck on my tongue once and it was quite nasty. i keep a bottle of water next to the bed so first thing in the morning off comes the mask and in goes the water. i tend to sleep with my mouth open as well. moves more air that way. thanks for the input les.
 

dana

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O.K., this may be a silly question, but why do you wear a mask to bed Al? And, what is a bipap machine? Does it have to do with why you wear the mask? Just curious to know what you are all talking about, and if this is something my dad will need in the future.
Dana
 

Al

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Hi Dana. The Bipap machine stands for Bi-Level Positive Air Pressure. It is a machine that basically breathes for you at night. In my case my chest muscles have deteriorated so that when I recline or lie flat my muscles won't move my lungs and I get no air which can lead to suffocation and death. The machine also is supposed to let your muscles rest at night as well because it is doing all the work. It pumps air in and pauses while you exhale for a set limit and then pumps you up again.
You can use a variety of masks for it as well. Some people use nose pillows that just plug into your nose. Some use a mask just over the nose and I use what they call a full mask that covers my nose and mouth. There is even a mask that covers your whole face that looks like the Jason mask from Halloween.
Also there are no silly questions here. Feel free to ask anything about this disease. None of us know all the answers but there are enough of us that someone usually does or at least can steer you to a website to find out. Not all ALS patients need a Bipap but your respirologist or RT will hopefully be keeping an eye on your dad so that if he needs it they'll get it for him. Good luck.
 

Al

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Good site lots of information. Thanks Patsy.
 
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