I have TN types 1 and 2 and just a few days ago my medication (gabapentin) was increased to 1200mg.
A very painful day with new symptoms: along with waking up with searing pain on the left side of my face, cheekbone, eye socket and jaw, pain along the bridge of my nose, needle jabs by my nostril, tingling around my mouth and on my chin and stabbing pains in a variety of places on that side, today I have something new: tingling and burning in my tongue, palate and upper throat and aching and burning around my left ear. I have had stabbing pain in my palate before that feels like a nail was driven in diagonally, as well as plenty of jaw and tooth pain, but this burning sensation is a new one and really uncomfortable. Anyone else out there had these symptoms? Maybe this is Burning Mouth Syndrome? Maybe something else? I know you all aren't doctors but I am so tired of doctors appointments (even though I have only been dealing with TN for one year) and don't want to call the doctor for another one. Hopefully tomorrow it will be gone.
I appreciate this site so much and visit here often for moral support! I often feel desperate just to connect somewhere that understands.
This monster called TN often for me feels like a very strong, stubborn octopus, or a jellyfish whose stinging tentacles are stuck fast to the left side of my face, so constant and present to me though no one else can perceive it.
Hi Sara, we all experience TN differently and react to the meds differently do its really important to monitor and keep track of how and what and when we’re feeling different things. I usually use the wait and see approach ( unless it’s sonething I feel could be an allergic reaction) if I am still concerned after 24 hrs I will call my doctor.
But you know your own body better than anyone as well as how much you can take etc. use your gut instinct!
I’m sick of doctors, neuro’s, tests etc too…so I do understand…this whole TN thing sucks!
You have to take care of you though, first and foremost, I hope you are feeling better today… (((( hugs )))) Mimi
Hi, I too sometimes get bizarre symptoms out of the blue, I generally just have severe continuous pain down my right side, topped up with the good old stabbings down the back of my eye. A few weeks a go I got a burning sensation around my nose and lower jaw, doctor said its just another symptom, they can change at any stage. He also said that side effects can change at any time. Even if you have been on the same meds for a while. I wish you luck xx
Thank you Mimi and Mark for your replies. Having this condition has been very confusing for me particularly with the effects of being medicated. My dosage is now 1800mg so that is challenging in itself. I read about those on higher doses and can just imagine what that means for them! I appreciate so very much that all of you here are so encouraging and caring enough to answer and share such important information. I hope you are having a good day and that there are researchers and doctors who pay attention to this site and our varied symptoms.