I’m new here. I’m 30 years old and was just diagnosed with TN. Symptoms started a few months back. Thought I had an ear infection. Pain was radiating from my ear down my jaw. Dr didn’t find an infection but found fluid. So I was placed on allergy pills. I started to max out on Advil by 2pm. Knew this wasn’t normal. Dentist said my teeth were fine and he was actually the one who dx me with TN. Since then I’ve seen a neuro and everything and he started me on Trileptol 150mg 2x/day.
I would say I have a combo TN1 and TN2. Constant aching burning pain and periods of intense pain lasting as long as 30-40 minutes. Horrible.
The 1 pill, 2x/day wasn’t helping. I was still in pain. So, he increased it to 2 pills, 2x day. Cool.
Yeah. Not so much. I woke up the next morning and could barely make it downstairs. I was so dizzy. Cold sweats and dizzy and dry-heaving. Horrible. The pain had also moved. My cheek no longer hurt but now my teeth did - so much so that I could t bite down!!! I’ve been on a liquid diet for two days.
Is this normal? The shifting pain?
I also woke up this morning and my cheek is swollen and slightly numb. Is this part of it?
I will say he wanted to take me off the Trileptal and put me on neurontin. I went back down to the 1 pill 2x/day and now that seems to work. More achy pain and less stabbing/burning pain. Not 100% but better. I’ll take it. Bc the pain before was just horrendous.
Is the swelling normal? The shifting pain?
Sometimes when I bite down I get a little jolt of pain. I am not sure about the swelling, but I have noticed that sometimes my left ear gets red and hot feeling during times that I am having trouble.
My TN is in my teeth (all the molars on the left side) top and bottom, sometimes just the top or the bottom and sometimes in one tooth, not many. Sometimes it switches to my jaw, cheek and my ear. I feel like I have been punched in the face. When it is in my teeth it isn't usually in anywhere else. And when it is in my cheek it isn't usually in my teeth. I have no idea why that is. I have also had my ear looked at several times. It feels plugged sometimes. No infection but my doctor did see some fluid in it too.
I don't know about the swelling either. I have never noticed any physical symptoms to my pain. When it is really sore I have looked in the mirror and thought how can something so excruciating be invisible! lol. You should ask your doctor about the swelling
I'm sorry you are having so many problems with your meds. I hope you find relief soon.
I've been diagnosed for about 15 months and my pain shifts as well. At the moment it's all in my right cheek so at least I can eat. When it shifts it's in two bottom molars and always in my toungue. My present doctor (the one who diagnosed has left the practise) didn't believe I had it so sent me for a cat scan to look for sinus! Because I can also feel swelling I was surprised that didn't show up. (nor did the sinus) but I am numb almost all the time in my lips, jaw, chin , tongue and inside my mouth.
At the moment I'm trying not to medicate for a couple of daysas the drowsiness is awful!!
I am new here and take my advice with a grain of salt, but if it were me, I would want to rule out that the swelling in my cheek was not an infection.
I figured the swelling was just part of the deal! It's not a huge swelling, it's just........bigger. The doctor gave me antibiotics for my psuedo sinus and the .......bigger....... is still there.
Hi everyone. Just wanted to update you: the swelling has gone down 90%. Last night I felt a knot in my jaw where the swelling was. Somewhat painful. Then later that night I felt the numbness moved. It’s not pretty much on my chin, stopping in the middle where the other side of my face starts.
The numbness is tripping me out. And it al started after a horrendous day of attacks. Why would it be numb?
Had an MRI on Saturday so we will see soon enough. Hoping it shows the problem but nothing else too nefarious.
Have you had your bite checked?
Yes. That started the whole process. Thought my pain was tooth related so they shaved down the new filling. Been fine. Up until this last week then the pain went to my tooth. Now that the meds are working, the pain is almost gone it now the numbness. That’s the weird part.
A friend of mine said she had same symptoms as me, & went back to dentist & her bite was off, so the dentist had to file some of tooth down. She felt about 50% better, but had to go back again twice til her bite was corrected. A simple solution, doesnt hurt to have checked. I went to chiropractor on monday, he thought my jar was out a bit, but on other side than the pain, so he adjusted it, by night the pain had gone & I had a big swollen gland on painful side. Went to dentist on Wed. & my one tooth is dead. I was told that after the chiropractor did the adjustment, it drained other side of the poisons around tooth. Actually after the adjustment, & him telling me one side can affect other, I kept pushing up on the other side where jaw hinges & I could feel relief, & some draining til pain finally died off. I’m going to see dentist this Wed., to have 2nd discussion on root canal, but I’ve read too many bad things about leaving a dead tooth in your mouth & I’m also afraid because I think its better to stay away from my nerves. I wasn’t sure if I could post the bite thing anywhere so I thought it might help others if they get that checked first. My friend said she was in agony over it. & also my bite was off as well.
Lizzie, it is interesting you mentioned new filling. I just had a filling done in my upper molar opposite my nerve damage area , and since then 4 other lower teeth hurt like hell and I got the zinger electric shock sensations for the first time. So, yeah, I think either the drilling or the novacaine shots made my TN come out more or something. It's weird that the pain turned to numbness, and now the numbness is in your chin instead of your cheek area....I know it feels freaky , but I would much rather have numbness than pain any day, glad your meds are helping with the pain :)
Lizzie, your symptoms and experiences are exactly the same as mine; we could be twins! The numbness spins me out too,mespecially my toungue.