Status
Not open for further replies.

TheRock35

New member
Joined
May 2, 2007
Messages
8
Reason
PALS
Country
US
State
Arkansas
City
Bella Vista
I was diagnosed with PLS in 2007. In the past year, I've had big issues with my gag reflex. My throat and tongue are very sensitve and will convulse or stimulate my gag reflex very easily. I have trouble eating things like salad or spaghetti since they linger on the back of your tongue when swallowing.
But that's not my issue since I can easily just not eat those things. I have to suppress my gag reflex throughout the day even when I'm not eating anything. It gets worse when I'm tired. The only way I can calm it is to chew gum or pop a mint or something like that.
Does anyone have this issue? What have you done about it?
I am scheduled to get botox injections in my throat but my neuro says it will just benefit my voice, and not likely to address the gag reflex.
She says that she has one patient that has this issue and it causes her to actually vomit.
It's a nightmare dealing with this all day long so any advice would be appreciated.
 
I've never had this, so I'm not speaking from experience, just reading. Your gag reflex is pseudobulbar, not bulbar. An exaggerated gag reflex is a form of hyper reflexes. It's a much more inconvenient form of the same problem that makes our legs kick the doctors with great force during a reflex test.

For short periods of time, you stop from gagging with one of those sprays they use when they do endoscopys or esaphogeal manometries, where you don't gag because you don't feel whatever is bugging you. You could maybe ask your doctor if that stuff works long term and can be used at home?
 
oh ,i so know what you mean with salad and spaghetti but both are my favorite foods so i just have to cut them up and chew them better.
my other problem is brushing my teeth,sometimes it has made me sick.........can't touch my tongue with the tooth brush,even on the tip it makes me gag.
any other time i think i'm ok,with me its spasms in the jaw and lower facial muscles thats a problem.
have been offered botox injections for this as my last bad period resulted in a cracked wisdom tooth but i was told botox can result in problems with regular use.........so i declined for now but if/when they get bad again i may give it a try.
suppose they may work for your gag reflex,that would depend exactly where they inject but i have a feeling they would only target one specific area.........i think your neuro knows best.
have you asked if theres any other medication that can help?
from what i know and have read regarding baclofen and bulbar symptoms is very contradictory........some information say baclofen works on bulbar symptoms and others say its not as effective,i personally dont find baclofen helps as well with bulbar spasms then body ones.
however,pls effects us all in different ways so we have to find what is right for us.
if you get the botox injections please let us know about your experience as i am very intrested.
 
Rog used to gag badly while he was still eating and gags occasionally when he brushes his teeth...he didn't do a whole lot about it. He did get Botox for his saliva on Friday and it seems to be drying him up.

Jen
 
I do not have the hyper gag reflex thing so cant speak from that, but like Caroline, I get the spastic muscles under the chin and occasionally on the tongue. I also get the excessive spit going down the "wrong pipe" type of feeling that causes me to choke and sputter and sometimes gag. I also have to slow down and take small bites as I can choke easier with my food now. Especially have to be careful with liquids.

I do hope you find something that helps. That sounds like a horrible thing to have to constantly deal with!
 
Thank you! I will ask my neuro about that. At this point I am willing to try anything to help
 
oh ,i so know what you mean with salad and spaghetti but both are my favorite foods so i just have to cut them up and chew them better.
my other problem is brushing my teeth,sometimes it has made me sick.........can't touch my tongue with the tooth brush,even on the tip it makes me gag.
any other time i think i'm ok,with me its spasms in the jaw and lower facial muscles thats a problem.
have been offered botox injections for this as my last bad period resulted in a cracked wisdom tooth but i was told botox can result in problems with regular use.........so i declined for now but if/when they get bad again i may give it a try.
suppose they may work for your gag reflex,that would depend exactly where they inject but i have a feeling they would only target one specific area.........i think your neuro knows best.
have you asked if theres any other medication that can help?
from what i know and have read regarding baclofen and bulbar symptoms is very contradictory........some information say baclofen works on bulbar symptoms and others say its not as effective,i personally dont find baclofen helps as well with bulbar spasms then body ones.
however,pls effects us all in different ways so we have to find what is right for us.
if you get the botox injections please let us know about your experience as i am very intrested.
Yes, I have issues brushing my teeth as well. I just have to do it and suffer the gagging.
I will let you know if the botox works.
My neuro didn't know of any specific medication that would address the gagging.
I take Baclofen but it does not have any effect on the gagging.
I also take Nuedexta. My neuro prescribed that to help me with my emotional control. I laugh at nearly everything. At least it's better than crying which I've heard some people have issues with. The Nuedexta has the added side effect of making my voice a little better. Just a little though.
 
Status
Not open for further replies.
Back
Top