I’m still new to all this TN, but have learned I have both TN and ATN. Luckily, my symptoms are on one side, chin and jaw - back to about my second molar. As I’m having more frequent episodes, I’ve noticed my nose goes numb (which oddly makes it ‘itch’) and may very well be triggering more symptoms. Learning and more learning…
Brings me to my question: I have a knot that gets in my jaw/cheek during a TN attack. Normal? Also, since I’ve had this last episode lasting two weeks, I’ve noticed that there is a knot I can run my finger across inside my mouth along the gumline. When I touch it, I get a shock. There is also a knot on the cheek/chin area that is not on my jaw, but they are both in the same place.
On another note: having another peeling/hive/ itching reaction to my gabapentin (which the neuro assured me was not caused by the drug!). The oxcarbapentin created horrible leg and back pain, but definitely worked better on the TN pain.
I’ve had all sorts of reactions to the medicines we tried. I went stupid on Tegretol, I went cross-eyed on neurontin which is gabapentin, i swear, i could hardly see anything… lyrica made me numb, etc. Not common side effects for these drugs but I know my body and know when it’s reacting to something new.
My symptom, when i get it on the nose, is something very similar to drinking coke and it going up your nose. OUCH!
Krystal, I don’t get knots, but I do have constant swelling on my cheek, especially along the fold that runs along the side of my nose. I don’t get the shocks when I touch it though. It’s just kind of sore, like there is inflammation in the tissue there.
As far as the drug reactions go, did the symptoms go away when you stopped taking the med? If they did, that’s proof enough for me! As someone else said, everybody reacts differently. Sometimes it’s not the drug, but something in the binder they mix it with - and different manufacturers use different binders so you never know what you’re getting.
That’s nice to know about the different manufacturers…just something else to think about. Yes, the rash did go away after stopping the meds, took about 8 days for everything to clear up from the worst. I can deal with the skin peeling, now that the redness, hurting and itching is gone.
Thanks for all the information!!
Mary Licardi said:
Krystal, I don’t get knots, but I do have constant swelling on my cheek, especially along the fold that runs along the side of my nose. I don’t get the shocks when I touch it though. It’s just kind of sore, like there is inflammation in the tissue there.
As far as the drug reactions go, did the symptoms go away when you stopped taking the med? If they did, that’s proof enough for me! As someone else said, everybody reacts differently. Sometimes it’s not the drug, but something in the binder they mix it with - and different manufacturers use different binders so you never know what you’re getting.
I got knots and my face would swell like the elephant man. I hated to leave the house because most of the time my face was swollen. The neurontin made me very evil. I know it sounds crazy but I used a vibrating massager on the knots and it helped alot. I immediately applied heat or ice which ever worked at the time but it was a great source of relief for me.