I have had TN for 2.5 years. Classic variety with some aching and burning following the zaps. I have had an MVD in September of 2012 that was not successfuland am currently taking 30mgs of Baclofen and 800mgs of Carbamazepine daily. I max out pretty quick med wise and can’t seem to tolerate most meds used for treatment of TN.
My Tn has always had a lot of mouth pain but in the past few days it has switched course to being constant, day and night, burning right sided tongue pain. I am swishing with salt water in case of canker sores developing but so far no sight of sores just a slight swelling on affected side.
This is crazy! Can Tn. or at least some triggers switch from TN to ATN2? How can I deal with the constant pain? I live in Canada so I will likely need a prescription for any changes.
Patty--I have the constant right sided tongue burning. There have been a couple of good convos about it if you search for it in the forums. For me I had to increase my med to alleviate the tongue thing but it is pretty incessant. The first time I had it for a couple of months constant. I am bilateral ATN. Now it seems to come and go, sometimes for an hour and sometimes and day or two, like all of my other symptoms of pain.
I mostly just have TN2 symptoms but yes I think many people have both 1 and 2. The tongue really drives me crazy. It feels like there is an ulcer or open sore on the side of it. There is nothing there though and I have had it examined MANY times!
It sounds like you have been through a lot with this beast. I hope you are able to gain some control over your pain. I am on Nortriptyline (was on Amitriptyline before that). I think that the tricyclics can be off help for the constant type 2 symptoms for some of us.
Tough situation. I can relate. I would suggest a second evaluate from a good neurologists. If in pain ask for a pain med otherwise hot and cold compresses. Also yes TN can manifest in ATN for example my TN is now ATFP with deafness vestibular issues and so on
Yes, my TN1 first gradually spread into all six branches and then switched into ATN + TN1. I manage the jolts etc with carbamazepine, but have nothing for the ATN apart from codeine when I get really desperate.
I get pain in my tongue too, and yes, the sides, but rarely prolongued. I also have pain on the sides of throat, ears, teeth and gums. This condition keeps you entertained, that is for sure. It started 15 years ago, and I haven’t mapped the progression, but something new seems to happen approx every 6 months. Running out of places now, so it is due to stop soon.
thank you all for sharing your experiences with me. it gives me comfort to know that my experiences are not all that unique. wishing us all comfort and peace
I’m so sorry to hear Patty, and unfortunately yes it can change this way.
My left MVD side was always TN2, ( burning, constant pain , knife in ear, teeth, jaw line etc) as it progressively got worse, I started having TN1 shocks, it was/is madness.
I also had/have the burning side of the tongue but on my left…I’ve found nothing helps me, but I do tend to bite down gently when it happens I think it’s an automatic reaction for me.
5 months After MVD, I started having more eye involvement in addition to the other 2 branches…
When first diagnosed I had TN1 shocks just under my Right eye, no where else, a few months later TN2 developed on my left.
After an 8 year remission, my right side TN1 started in my ear, then went into my teeth, jaw line etc no eye involvement.
It keeps me guessing …
I hope this settles down for you and/or you find something that helps…( let me know)
Huge (( hugs )) Mimi
