The never ending saliva and pleghm

[chrisroski]

I feel like screaming, this saliva and phlegm is just relentless. They put me on something call levsin elixir with is generic for something called hyoshcine (not sure I spelled that right), but it is doing nothing. I am walking around with paper towels and going thru them like crazy. I can't stand it, plus the bottom lip hangs down, it is so embarrassing that I don't want to go anywhere like this. How do all deal with this. I can't this everyday, it is horrible. I read something's on the forum, but doesn't seem anyone really has a good idea what to do either.
Has anyone come up with a good idea for this annoying thing? As I said, just feel like screaming, that's if I had a voice to do that, so instead I cry. God help me, but I just want this all to end. This is to living, this is a nightmare. Have a call into neuro, but haven't heard from them yet.

 

[panguinjen]

Hi Chris,

Sounds like our house, Rog's mouth is losing muscle control and the botox has thickened his saliva and his mouth is bleeding. We have an appt with the dentist next week, I'll keep you posted. We buy washcloths by the dozens as he uses them constantly....he's finding it difficult to brush his teeth and keep his mouth clean, but doesn't want me to help... I've suggested the suction machine when he's brushing with no response...this drives him nuts as it is you...

Jen

 

[chrisroski]

I just don't understand how we can put men on the moon, transplant all kinds of organs, and re-places faces, separate twins, make thing that lose an arm or leg so they can walk, that this medical profession cannot find a cure for this, or at least someway to slow it down, or something to help us with something that seems so simple like saliva & phelgm. It truly amazes me. I don't have a suction machine, but I guess they'll want me to get one & a bipap for breathing, cause this is becoming an issue now. People say be glad you can still walk, they have no idea what I & other people go thru everyday just with saliva. I don't want to go out with this lip hanging, and not to brag, but I was always told I was very attractive for being 64, not no more, I look like hell & feel that way too. This is not living, this is just going thru the motion to the next horrible day. I would rather die, then be like this.All you have to look forward to is more formula, machines & medical bills. I really truly hate it all. Sorry, but that is the way I feel. Let me know how Rog's make out with dentist. Sorry is mouth is bleeding. I guess the Botox didn't work?

 

[panguinjen]

It worked some, there is less of it and it is thicker, a problem in itself. The loss of muscle control in his jaw makes me want to get a ribbon to tie his jaw up...he hates that weakness. I don't get why this can't be controlled either, but I know that everyone reacts differently to the meds.
Chris, you are an amazing person! I admire your ability to deal with your daily life, you have helped me by saying the things that Rog won't so I can be more sensitive to his needs.

Hugs,
Jen

 

[ccurths]

I know,
I've had the saliva and phlegm for a long time:-(

 

[chrisroski]

Thanks, I've never be one to keep my thoughts to myself. When I was younger I was afraid to say things, not any,ore, I say what I think. I don't know about being strong, I thought I was, but not so much anymore, got e mail from neuro to try elavil, but I had that years ago & was banging into walls, no thanks, and something called Robinol. Has Rog tried that. I usually don't need a lot of meds to work. I would get a headache & take 1 Tylenol, other people 2-3. I like the idea about the ribbon on the lip, I would love to tie it up. Rough night again, not much sleep, but when I wake up my tongue feels like shoe leather and the roof of my mouth. Keep me posted, and will also, God Nless Us All

 

[panguinjen]

Chris, I was wrong... The Botox is working... Just have to keep your mouth clean... The bad breath is horrendous... I'll let you know what the dentist says!

Jen

 

[WillyB]

Have you tried vital steam treatments? I had not heard of such a treatment until I went to a speech therapist. It strengthens the muscles in your face and neck. They use it a lot on stroke patients. When I found out about it I had it done. It didn't help the excessive saliva but it helped me swallow it where I was not drooling all the time.

 

[chrisroski]

No never heard of that. Where do you get something like that done?

 

[chrisroski]

So I have been taking this med called hyoscyamine elixir (levisin) for a week now, and it is doing nothing for the saliva or phlegm. Was up all hours of the might this weekend, pulling this stiff out of the back of my throat. Put a call into neuro today, but did not hear anything yet. I'm so tired, and this med not only does nothing, it makes me slleepy and gives me blurred vision, which would be fine, if it worked. I've been crying all day. The bottom lip won't stay up and that makes me breathe thru my mouth, and the mouth outside is so dry and my lips are cracking. I'm at my wits end with this stuff. I have no energy, and haven't done a thing around the house, and I don't care, which anybody who knows me, that is not me. I'm so upset, I don't know what to do. Just want to crawl in a hole and never come out, this is horrible,

 

[panguinjen]

Chris, I'm so sorry...I think the dry mouth is causing his mouth to bleed... He hates the taste of bi o tine.... Dentist appt can't come soon enough! I'll let you know what I find out! you are right, it is horrible!

 

[mich5]

Was unsure whether to post, but you never know what will help. I am early in this disease but have some excess saliva (I can still swallow and eat). My doc gave me a script for Transderm Scop patches. They are the little 'circle bandages' you put behind your ear to prevent motion sickness. One of their side effects is drying up your saliva. It works for me. My mouth is not too dry but the watery saliva is less -- not 'gone' but less -- more of a 'normal' amount.

 

[chrisroski]

Yes I know about this, trying to get insurance company to ok this cause it's not om their drug list. Thanks for the info,

 

[WillyB]

My speech therpist did it. Insurance won't pay for it alone, it needs to be included with the therapy.

 

[notme]

You might ask over on the ALS side, too. Maybe under the tips section

Elavil comes in many dosages, maybe yours in the past was too high. Some use some sort of patch. Others Botox. Others keep suction handy.

With lip weakness, you'll likely want a bipap worth a chin strap. They do take some getting used to, but you should adjust with it properly fitted.

There are all kinds of meds with the side effect of dry mouth. I'm sure some of the PALS or CALS will have more ideas.

Hugs. Wish I could offer more.