In November/December I had some dental work, a filling and a crown. I began to have tooth pain after this, mid-dec I had a cleaning, the pain worsened the weird part is I couldn’t tell if it was up or down or which tooth, but I went back and the dentist said I probably needed a root canal and referred me to a specialist. I decided to wait to see him till the new year as I had surgery coming up, she gave me some antibiotics and some prescription strength advil. Both did very little to help the pain, although at this point the pain was bearable. Then I had surgery on dec. 21st minor D&C polyp removal, however since I have had intense pain on the right side of my face since the surgery. The pain is right below my right eye to my ear along my jaw line and chin all on the right side. Which is weird since the surgery was no where near my face, but my ENT thought it might have something to do with having been intubated, the pain is so intense that I am unable to function or move, I am now up to five different pills to control the pain and still no answers to why. The ENT sent me to a neurologist who said it was either atypical TN or face pain. I go in for an MRI with contrast and a MRA this week. It is weird for me to be on so many pills and most of the cause me to be sort of out of it, I usually don’t even like to take an advil even for a headache I will just drink more water. I have never had a chronic pain issue and I am feeling a bit like I am letting everyone around me down. I am supposed to be mom, wife, volunteer, everything and I have barely been able to drag myself out of bed and then I take several naps through the day. I wish I knew why I am in so much pain and how do we fix it, I felt like the neurologist was treating me like it is “all in my head” but I know this is real pain I just don’t know why. One of the pills seems to be making life a bit better Neurontin, so I hope that my nights of waking up crying are a thing of the past, but after nearly a month I beginning to wonder if this will ever go away.
Fire your neurologist!!! You do not need to be treated like that! Your neurologist should have several TN patients to be competent. We are 12 in 100,000 - very rare.
Get some topical lidocaine patches from your regular doctor. neurontin should work - good start - narcotics don't touch it.... read/read/study/study alllll you can so you can make the most informed choices for treatment instead of taking whatever they give you.
Read under the Face Pain Info tab above -- take it in slowly -- and get the book "Striking Back" by Dr. Ken Casey
The faster you learn about TN - the faster the path to your best treatment.
As KC says, I fully echo it all!
If your neuro is making you feel like that, FIRE THEM and get a new one! Try to find one who has dealt with TN. Neurontin IS one of the drugs used to treat TN, so it's good that it's helping you. I understand how you feel, but make sure you take care of YOU. ((((big hugs))))
Update: I had my MRI and MRA this week, they were unable to do it last time because they were unable to find a vein in my arm to do the dye (took 7 tries this time, ouch). But everything came back fine, my ENT responded with:Good news. MRI was normal. Hopefully the pain will continue to resolve now. And my Neurologist with:Your repeat MRI looks good. How is your pain?. I feel frustrated. I know I need a new Neurologist my is not very good and communicating and when I told him the Neurontin was work pretty good, but I was having some "break through pain" with things like cold and flossing, He just wants to add another medication Trileptal. Heres the deal, I am new to all this and this TN hasn't even officially even been stated as my diagnosis it's just been floated out there as a possibility. I have been reading a ton, a lot on hear and other places. (Sorry I don't write a lot but I just don't know what to say when I feel so confused myself). But, it seems like there should be more to it then just throwing a bunch of meds at me, the meds are not fun, especially when I am trying to keep up with my two 8 year old boys! I would like to know why this started after having surgery (on a completely unrelated part) and I would like someone to suggest we make sure this isn't anything else that could be treated or fixed before I live a life on meds that make me feel dizzy, absent minded, and tired. The bad thing is I have Kaiser and there are only 4 Neurologists in my area and they all work together. So really am I going to get anything better from another Neurologist and is there any other doctor who can answer questions. I feel like I have lots of questions and that my current Neurologist is barely communicating with me, he would rather just dope me up more. Also I have TMJ issues could this possibly be and extension of that? Or could they both be going on at the same time? I don't expect anyone here to answer this, I just wish I had a doctor I could discuss this stuff with. I want to know why and what, and how long...I want to be able to answer my families questions, when they ask the same...do you guys know what I mean?
Your story couldn't be any more similar to mine. I wish I had some words of wisdom, but I really don't; however I can relate and understand what you are going through. I've found myself in a dark place lately where I strangely find it sounding like fingernails on a chalk board when the doctor comes back to say that everything was negative and the results of whatever series of endless testing have come back looking great! Of course I'm thankful that they don't find anything terminal but I would so love them to find something treatable. I think my neurologist and PCP have actually given up on me. I feel like they see me as a hypochondriac now and have pawned me off on a pain management doctor. I hope your story has a happy ending.
Thank you everyone, Today the Neurontin wore off or started wearing off before I could get to my next dose, and my face on the one side became flush and I had prickly feeling all over the side, it was not pleasant, but once my next dose really kicked in both the flushness and prickly went away...does this sound familiar? This is fairly new to me I am more used to the pain.
There are some similarities with your story and mine. I’m so very sorry you are hurting like this. You might want to double check your dental status with an oral surgeon, but I think a good neuro is toP priority. If your meds have helped you, it does sound like ATN. Don’t hesitate to get a new neuro if yours does not take you seriously. Quietly and most assuredly fire him.
Can you go to another zipcode? I think Neurontin is a valid helper for atn / if you have more burning that zapping pain. Adding trileptal will make you more druggy.... did you ask any of your docs about a topical lidocaine? really helped me stay lower on the meds
IF you have TN it is not going to go away. Meds and surgery can put it in remission for weeks, months or years.
Most of us cannot "prove" what caused our TN - but we have an idea -- some are prone to get it genetically
I went to oral surgeon - worked on my left back jawbone --- 4 hrs later I was in the ER with tazer-like pain in my RIGHT cheek not left! Narcotics they gave me did nothing!
Took a long time to quit thinking about the why / when etc. My best deduction is whiplash - I've had it many times before - and the Roughness of the oral surgeon yanking on my neck was the last straw.
MRI mostly does not show compressions - so not really a perfect diagnostic tool.
The fastest road to "better than today" is learn/read/ask learn / read / ask
Get the book "Striking Back" By Dr. Ken Casey - highlight stuff - have others help you research
Go to google images and type in trigeminal neuralgia -- will show you many images of where your pain path(s) are - you can print off and show a doctor--
Also - google McGill Pain questionnaire - print it off and take to dr. It is very comprehensive for our unique pain types.
If you get an official diagnosis of tn - get a letter from doctor stating so --- in case ever in ER and need BIG drugs.
Sorry, this is a lot--- what I did was cut and paste all I wanted to know about TN from the internet and here - onto a MS word document - I picked and chose what I might need in the future - and what sounded like it applied to me.
The book of course will be such a great tool to teach family/friends with!!!!!!