bulbar nightmare.

[Geo]

Grace thats the Drugs ,thats why we dont know whats happening . I hope its helping him . I think i was also On Neurontin didnt do nothing for me though . Some have had the Baclfen pump ,where they install it in your spine . i hope he doesnt have to have that . Geo

 

[olly]

i know alot of people can't tolerate baclofen and it makes them too drowsy , i personally don't have a problem with this and have to take sleep meds on a night with my baclofen.
i have however developed hypotension, they just think it's due to being on the meds for years.
take care
caroline:-D

 

[Judith]

Hi Caroline,
My PLS started in the bulbar area. It's been 4 years now. I bite my cheeks, tongue and lower lip frequently. Sometimes I just get sooooo angry I wanna spit, but I can't even do that! Be very careful of hot foods and drinks. I had some hot cocoa and took a drink not knowing it was very hot. I couldn't spit it out. I couldn't move my tongue around. It burnt all under my tongue. Just recently I burnt the middle of my lower lip. It is so hard to be mindful all the time. It certainly is the pitts.

Judith