GPN/ TN tongue spasm from the devil

Has anyone ever experience extremely painful tongue spasm with their TN and GPN? These are so painful that it seems you could look in the mirror and see your tongue flopping around yet it isn't. I call them seizures of the tongue. They happen mostly around the base on both sides but also in the front of the tongue sometimes. Sometimes, just opening my mouth triggers them. I have these every day and it has truly sucked my will to live.

Thanks for any response.

I know it's terrible,but don't let it win.It can and will get better!You may need to up your meds or some other option.There is a way.Hang in there!Don

Is this pain? Have you had lidocaine mouthwash? Maybe that would calm it down? Calms nerves.

Very sorry to hear you are going through this, we want you to have a great will to live, but sure understand the feeling. I have not had exactly what you are describing, but especially on bad days, I have an incredible burning of the tongue, gets intense. Even on good days it is there. Been checked, no tongue problems, so know it is TN, never had it before TN. This can suck the life out of us, sure get that, it is hard but we gotta keep on. I was trying to groom my dogs the other night and just the vibration of the clippers sent me into an awful attack, I got so mad and frustrated, something that needs to be done that I love to do (believe it or not, dogs love it too), and there I was paralyzed in pain unable to do it. Hurts to cry, but I had tears rolling down and that even hurts the bad side. You know you are not alone and we are all here for you and care about you. Dogs still a mess, but just will try again when things calm and I have to believe they will. Please let us know, hopefully Lidocaine or something new can bring relief. Take care of you!

I have GPN not TN. I have tongue spasms once in a while and they're exactly as you describe.

the first time I had one it freaked me out. actually it still does.

I'm so sorry you're having them everyday.

I also regularly have pain (vs spasm) in back of tongue.

the pain associated with this condition can be horrific, soul destroying.

we're here for you.

I have this allot of the time. I know that it is from talking or singing, Sometimes i just have to be very quiet for days to get it to stop, then I am stupid again and start talking to much. With my job I do allot of talking cause I have to. Wish I had a cure for you I just know being quiet is my answer, I even have to text people instead of calling.