Since being diagnosed with TN a few weeks ago I have been doing lots of research. On possible causes and treatments. This has been such a frustrating time for me. I am 36 and have never had any real health problems. I hadn't been to an ER since 4th or 5th grade. A year ago i decided to get healthy and FINALLY lose that baby weight. I have losy 40lbs and was feeling great, and then one Friday morning back in August everything changed. That's when the worst pain of my life started. I wish I could know why this happened. About 7 years ago I fell flat on the left side of my face. It looked like that side of my face had been in a horrible accident. Could that have been the cause? Or I do have a history of sores on my lips and inside my mouth. Maybe that? It's all very frustrating. The good news is that I started Lyrica a few days ago and so far no major side effects like the tegretol. It seems to lessen some of my anxiety and I feel much calmer. I had a really bad TN day last Friday. Thankfully my husband was home that day to take care of the kids so I could hide out in my bedroom. I hate those days because I feel like I am short changing my 3 kids. Really hoping after some time on the Lyrica I will have less bad days and lots more good days! I hope you all are having a great painfree day! Much love!
Idk, but I can tell you I have had TN for about 8 years now. In march our dog had some back problems sooo we built a ramp from the porch for him to walk on a leash up and down to take him out to go to the bathroom and he was on meds. Well... one night I decided to do something stupid and walk down this ramp (which was only a piece of plywood). You can imagine what happened next. I pretty much did a face plant on my left side..which is the opposite of my TN side. Now I became bilateral in January as a result of dental work. This was in March. ...Several months later I started having pain that felt like I had gravel embedded in that side of my face minus the blood. Then I also had pain that felt like sticking my face in an electrified thorn bush. What my doc did was increase my topamax..doubled it actually, and was on that for about two months. Now I am back down to my regular dose and I am doing pretty good. It took about 5 months for that delayed reaction to occur which I thought was interesting. Now mind you, it hurt like heck when it happened, but I was surprised that it didn't react negativley right away. Anyway... I hope it's done with me for good!!! LOL
Hope you are doing well these days. Min
That sounds painful. When I fell I damaged my left front tooth. It went thru my bottom lip and then it was pushed back so the bottom of the tooth was towards the back of my mouth. Black eye and lots of facial bruising. I went to a dentist that basically sat on top of me using what looked like pliers to pull it back into the correct position then I had a root canal. That side of my face has never looked right since. I wondered if it happened to long ago to be the cause of my TN, but made me consider it since it was my left side. I'm glad your doing good! I really love that I found this site. It's been so helpful...
YOWWWW!!! When I was a kid about 11?? I got hit in the face by someone's head. Right in the spot where my TN started. ??? Interesting huh. thought you might wanna know that too. LOL It started with burning pain on my eye tooth when I was eating soup. Then when the dentist started doing root canals those two teeth the eye tooth and the one behind it were both dead inside. This is exactly where I was hit in the face!!!!! I don't know if it is a cause. I have asked my neurologist twice on two different occasions if that incident caused the TN. Both times he said I don't think so. I am not totally convinced. So to your question that is why I say I don't know. Because there are a lot of us on here that have had trauma at earlier stages in their lives and have TN in the same area. By the same token, there are people who have work done on their face and accidents and have immediate TN symptoms. So who knows. But I think mine is... from the original hit personally.
TN is so mysterious! That sounds so painful! It just seems odd that such trauma and then TN on the same side...hmm. Just seems like more than just a coincidence. I suppose in the grand scheme of things the why probably doesn't really matter to much, but my curiosity seems to get the best of me. I spend quite a bit of time when the kids go to bed researching it all. It's mind boggling really. Thankfully I have a great family that is very understanding and has even done their own research and listen to all the info I have. As much as I would love to know what caused it, I guess it's more important to work on pain mgmt.
Sorry to hear what you are going through….. I know what it feels like to wonder the same thing so I thought I would share my experience..
My Pain Started roughly 2.5 years after trauma in the same area as the pain. I myself also wondered if previous trauma could have caused my pain. At first I came to the conclusion that wondering or even knowing such things was mentally unhealthy because it wouldn’t help and just increased the regret factor.
Over time though, I think knowing exactly what caused it can possibly make it easier to treat.I believe there is a cause to everything even though most is unexplainable, so leaving all doors open to the cause is a good option.
There is limited research which shows that a scar formed near the nerve at the time of injury can eventually tighten around the nerve years later, so pain appears many years down the road. 7 years does seem like a long long time, but again there is so little research in this field it’s impossible to say whether it is likely or unlikely. It would be even better if there was a study of treatment option to relieve “scar” induced pain.
I would at least run this by your doctors, it cannot hurt to ask. Better yet, see if any of your doctors are able to diagnose the exact branch of the trigeminal nerve is affected, even better if they can tell you what nerve it is. In my case I have pain in the V2 of the trigeminal nerve, but it is limited to the infraorbital nerve distribution. I then researched what causes pain to the nerve, and orbital blowout fractures are a common cause, and I had been hit in the eye pretty bad years back. If your face injury might have involved the same nerve as what’s causing pain, then that would be probably a better indicator.
What’s frustrating is I have seen probably 10 doctors, and their options have ranged from this is unlikely to yes this is probably the cause. Leads me to believe there is little known on this, so sometimes you have to try and find out a little more on yourself for your particular condition. It is great you started pain mgt early, should make life easier until you get a more definitive diagnosis or even get a procedures that would help with your type of pain.
Thanks for sharing! I'm going to make a list of questions and concerns for my next drs visit. It's not until the end of Jan which is perfect. I just started Lyrica and it takes some time to work so no reason to go back for a while. My first visit I was kind of in shock and didn't know much about TN. Now I feel much more informed, although it's all kind of confusing. There are so many grey areas. I feel like 7 years is probably a stretch, but ive had this place on my face close to my nose that has always looked and felt odd. Well, since my fall. I'm planning to run this by my neuron to just get it out there. I really appreciate your helpful advice! :-)
I got mine thru whiplash from a careless oral surgeon -- but I had whiplash before 7 different times
If you have not read the book "Striking Back" by Dr. Ken Casey
highly suggest it --- at some point we leave behind the Why -
I will have to get that book! Thanks for the suggestion!