Saliva ang phlegm

[Bert Kowaltschuk]

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

[johnnyd]

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]

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]

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]

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]

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]

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]

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

[lhart]

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]

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]

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]

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]

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.

[Patsy]

I have found that this is the best resource for the management of saliva and phlegm in ALS; http://www.alsa-or.org/treatment/treatment.htm
Patsy

[Al]

Good site lots of information. Thanks Patsy.

[john]

you may have heard of this before as there are many sites with this on it,

but there may be a connection with mercury as a cause

many years ago I had mercury amalgams put in and within three weeks I woke up with a swollen tongue,
after a few months that went down but for years I had really bad difficulty in swallowing, even liquid , or just plain gulping,
I considered the cause might be the fillings then thought that was a silly Idea as the health service woould not put something into a persons body that would harm them,

years later I found out about the mercury vapors that come off them from the television and news,

I still have them in and am tryng to get them all safley replaced with non toxic materials,

as conformation of my fears I told my brother about this being the cause of my problems,
and he reminded me that a few years ago he had the newer fillings in and they were fine,

but as a rear moler on his left jaw was broken , the dentist put in a mercury filling, because she said it may have to come out anyway , and was using the cheaper amalgam in case it was later extracted,

well his tongue swelled up on that side at the back just by that mercury filling,

he thought it may have a rough edge or something that was causing it,

he also had the same metallic taste that I had when my fillings were fisrst put in,
his daughter complained about his dribbling when they were out in his car,

and he was always apologising for spittle coming out of his mouth ,
and had difficulty in speaking properly due to his tongue being swollen on one side,

this carried on for the couple of months until he went back to the dentist, and she said it had to come out,

once the mercury filling was removed the swelling in his tongue went down and the dribbling stopped,
he has not had any problems since,

where as my problems flare up regulary, but not so bad because of the vitamins and minerals I take that help soak up the mercury and pass it out of my system,

a few of these are selinium, zinc, vit B's, vit C, and vit E, in fack all the anti oxidents help,
also foods that contain sulper, like cabbages broccoli onions garlic, eggs ect,

up to 80% of the mercury vapor that comes of the mercury amalgams is absorbed by the body when taken into the lungs

have a look in google for mercury amalgams and other names for it in google,

the university of calgary has an interesting film of the effects of mercury on brain cells, there is nothing gory in the film they use a microscopic bit of animal tissue

the double whammy is they used a form of mercury in vaccinations as a preservative,
so multiple vaccinations can give you a really big dose of it,

there are reports that Sickle Cell was virtually unknown untill the introduction of the amalgams,

and autism appeard after the vaccines were preserved with the mercury containing preservative,

take a look at the side effect of mercury and mercury amalgams and vaccines on the web,

I hope this helps someone,

[john McCarron]

Hi Al
I started off with a small amount of mucous which seemed to be collected at the back of my throat and it gradually built up. After a couple of months, during sleep and initial waking up my mouth and tongue felt unbelievably dry as if I had taken a walk in the desert, just as you decribe.

As time went by I started getting headaches in the morning. My wife who is fortunately a nurse, pointed out that I no longer snored and she had noticed that when I slept I was breathing predominately through my mouth, this she pointed out was a principle cause of dryness of the mouth. After undergoing a sleep study, it was determined that during sleep, my C02 level roses quite high. The consultant offered me choice of whether to use a Bi-pap machine or not. I must admit I was a bit surprised at his position, he is after all the expert and I expected him to make the recommendation.

Anyway I elected to go for it, at the moment I can only manage 3-4 hours with the full mask, afterwards I have a good drink of fluids. I now find that my mouth, when I wake up properly is not so dry, the mucous is minimal if any and best of all no headaches and I am quite lively through the day. I have to watch the sleeping though, too much without the machine and I am like a bear with sore head. Hope my experience is of some help

[Al]

Hi John. I too wake up with a bad case of the Dry's. My lips stick to my teeth some nights. I usually keep a cup similar to a hospital cup with a straw in it next to the bed. When I wake up I can slip the staw under the bottom of the full face mask and take water that way. Swish it around and I don't really completely wake up. Saves having to take the mask off and sitting up. I can't breathe at all lying down with out the Bipap. I take Amytriptyline to dry up secretions but haven't found the perfect balance. I use a humidifier on my Bipap also. Too low and I'm dry, too high and my nose runs for the first 2 or 3 hours I am up. Still working on that balance too. Just more of the fun things about this stupid disease.
I get the build up of phlem in my lower throat and it sometimes takes quite a while of coughing to get it up. I just keep hacking until it comes. Fun wow. Some people look at you like you're going to cough up a lung but I just tell them it's part of the disease.

[Bouter]

Hello - my wife was diagnosed with Bulbar ALS in Nov. 2002 and currently uses Robinul (Glycopyrrolate) by injection and well as amitriptyline to control saliva. The amitriptyline didn't seem to do too much but the Robinul works very well. It is given subcutaneously through a port when she feels like she needs one.

[me]

Welcome Bouter to our forum. Thanks for your contribution, it's good to see so many new faces (or names) around here!

[jmaggiem]

8) :P i have bulbar als and i found radiation treatmnent on the saliva glands worked well for decreasing my over abundance of the stuff. i wanted to try the botox injections but was unsure as to cost/success rate. thanks to everyone for the tips there are more then a few i have not tried.

[ronney525]

my remedy for keeping my mouth "shut" so i don't wake up with the desert tongue is i use a headband, put it over the crown of my head and under my chin area. this keeps it closed but is very comfortable and allows nose breathing easily. i do not use a bi-pap, but my jaw will slack open. perhaps this will help someone.