Hi, my TN has decided to come back in a new guise after about 7-8 years in remission. At first I thought it was a tooth problem, but because it was in my old TN tooth (my TN runs between two teeth in the right hand side of my mouth) I was skeptical. It started as a more severe sensitivity than normal, reacting to hot & cold foods (not that I eat anything very hot nowadays!). I hurt it about two nights running and the second reaction was ferocious. It kind of sledgehammered my tooth then I got this incredible pain that felt like a black bean deep in my jaw and then suddenly - WHAM! - shocks in the front of my mouth, so I knew it was a TN issue.
I’ve been on Gabapentin for a couple of months now, but a couple of days ago I’ve had breakthrough pain, I’m guessing because my 900mg isn’t enough any more. I’ll be up at 1200mg tommorrow, but I have a horrible suspicion it isn’t going to lift it.
My question is has anyone else had this kind of change in their pain? I’ve got a ‘new’ dentist (she’s a dental phobic specialist) who is sure it’s because there’s a big filling in the tooth (it’s always been there, since my TN started years ago), but I don’t believe it, I think my TN has changed. I know it does do this. I remember when I first had it reading that some people move from TN1 to TN2 with time, losing the shocks but having constant pain. This does smack of that.
Have any of you experienced a change in your TN to a different kind of non-shock pain (or having a combo of the two, which is what I seem to have now)? Anyone recognise the ‘black bean of pain’? Was there any meds you found helped it? The shocks were bad enough but now getting two types of pain, and the drugs not working very well, it is a bit of an unpleasant package. Any similar experiences most welcome, and how you dealt with it.
Yes!!! My changed too. I am ten years out of one mvd and 8 years out the mvd on the other side. A couple years ago the TN on the left side (8 years post op) flared and instead of just type one I now get both type one and type two on the left. I cannot take many of the meds but what I do take is trileptal along with low dose Percocet and a lot of ice packs to my head. I found if I can get through the first few days of the flare it backs off after a couple weeks. It is brutal. I have had dental work done too - if I have a flare that will not back off after two weeks I go to my dentist for exam and X-rays just to be sure all is ok. Last year he found a root of a tooth being compressed by an old filing. He theorized that this was part of my TN trigger. He did a root canal and crown which of course did not solve the TN but I’ve had less flaring on that side since that was done. He does all my work under IV sedation- that’s the only way I can tolerate it. Thank you for sharing - sometimes it is so bad I cannot believe it is really happening. I am sorry and sad for your suffering but am so thankful that you posted it. I am right there with you.
i’ve been 34 years with TN.
I have been 34 years with TN. After my fourth procedure no symptoms changed from classic electric shock type one sensations two type two sensations. I’d advise you strongly to try another dentist. Although you might have a dental problem the last thing any of us wants to do is to have a procedure done on her bad side if it’s unnecessary and just might make things worse. You’re also might want to read up more about TN and how things change over time.
I had trigeminal neuralgia on my right side which was treated by Rhizotomy, in 2010. it then presented again, on my left side, in 2012. It feels like every time it was triggered by something, either dental, oral herpes, or something Id like to blame as the cause. In 2016, I had a MVD of the left side which was successful for ~ 3 years. When it came back, I wondered “was it different??” As the pain progressed, as it seems to do, I even asked my husband, was “what I was experiencing worse?” As someone who stands by and watches, for years, said “no”. Not worse, Your just older Pain is so subjective, its challenging to describe how intense or sharp it can become. I think my pain has morphed over these years, although I dont think the devil is any different.
Im presently on Pregabalin, Duloxetine, & Topiramate.
The best results I’ve ever received from one drug was Tegretol. unfortunately, my liver had a very hard time with the drug and I could not stay on it. The results were amazing, and within one week.
I loved reading your story and others. Sounds like mine. Im so sorry you are suffering.
Be well & get well soon
Yes I have had returning pain for years now. I had MVD in 2012’and it was great for awhile.
Then it started again, not to extent it was but I had to retire and I have to be so careful about what I do. Talking and cold weather are huge triggers.
Most TN drugs don’t help.
My Neurologist gave me Venlafaxine Er 37.5 mg. It isn’t really for TN, but it has helped more than any others.
Also, Levetiracetam 250 mg. The good thing about this one is it works like a Tylenol in that you can stop and start it.
Hope this helps someone.
I was first diagnosed several years ago after experiencing TN symptoms on the left side of my face. That’s still where I typically experience pain (though fortunately I rarely have symptoms because Gabapentin works for me), but I have occasionally had pain on the right side of my face when the left side is flaring up. I’m not sure if it means TN is actually affecting both sides of my face now or if that was just referred pain. More strange is my occasional perception that I have water in my ears or that my ears are closing up. I didn’t have anything like that upon first diagnosis, and I’ve been to my doctor more than once who has looked in my ears and seen nothing wrong. I’m pretty sure this is also a TN symptom since it only occurs when I am having more traditional breakthrough pain.
I’ve been 22 years with TN with A typical pain. Medication didn’t work. I had a lot of side effects. Not I use marijuana and it at least dulls the constant pain.
My Tn has also moved to the other side of my face. I have given up with the doctors. There is not a cure. I’ve had it all. Even MVD. A lot of pain and suffering with that surgery with no good results. I have tried all the medications with terrible side effects. There was a time that my doctor had me on Neurontin and Valium. That helped but the side effects to the Neurontin was unbearable. Good luck.
Unless you have a dentist that is truly familiar with TN, don’t believe them. I did and ended up pulling so many teeth, after having root canals that made it worse. Dentists are clueless. Most medical professionals are hen it comes to this disease.
I had an oral surgeon that was pretty savvy with TN - he and my ENT doctor both suggested my pain was TN many years ago. But I wouldn’t let a dentist pull anything out or do anything without a second opinion. Too many of us have unnecessary dental work.