Now What?

Hello everyone! I'm new to TN, I'm new to this website, I'm new to chronic pain, and I'm new new to feeling so desperate for answers. And all wikipedia and other googling leads me too is that one line that says:

"It has been described as among the most painful conditions known to humankind"


Anyway, nice to meet you all. However, I'm sorry that any of you are living with TN. Let me fill you in on my situation:

I'm a wife, mommy to a 3 year old girl, and a 1 year old boy, Photography lover (esp macro), animal lover, and a neurosurg RN.

It all started with some numbness/tingling/decreased sensation with intermittent twinges of pain that I've had for approx 10 years. I have never made a huge stink about it so pretty much every Dr I've ever had just blows it off. Then in Feb 2014 I had a sinus surgery for a deviated septum. Then one month later underwent a second surgery to remove infected packing from the previous surgery. Everything was going really well on surgery day after surgery. I was getting ready to go home, they were getting ready to take my iv out when I suddenly experienced 10/10 left facial pain. (my left cheek) It was like I was being electrocuted. My doctor did a stat head CT, thinking I may have a post op hematoma. Turns out I didn't, but with my history, my ENT suspected TN and referred me to a neurologist. He also put me on neurontin, and a medrol dose pack. On Monday march 17th I was at work (i work eve shift) when I had 10/10 left facial pain again. I went to the ER which lead to a 4 day hospital admission. I screamed and cried like a terrible patient nearly the whole time. I went between wishing I was dead to being convinced I was going to die from pain. I'm a nurse. I know better then to act like that but all rational thinking when straight out the window while the pain was happening. The neurologist told me it was rare for people my age to get TN without MS or a brain tumor so he did MRI's To test for both. Also, I had recently been having numbness, tingling, and weakness to both arms. PS: an MRI During a flare up was absolutely awful. I was so lucky that the MRI said NO MS, and NO BRAIN TUMORS! Thank. God. (I do however have bulging discs from c3-c7 that do not require surgery at this time). The neurologist put me on tegratol and titrated me up to 400mg TID. They let me go home from the hospital on Thursday because my pain was doing MUCH better. I was having quite a bit of dizziness but I could tolerate that compared to the pain. On Friday 3/21 I had extreme dizziness. It was so bad that I couldn't even walk without holding on to furniture and my speech was impaired. I called my neurologist who told me how to taper off of the tegratol. While I was on tegratol, I had very little pain, now that I'm off it I'm having very constant 7-8/10 pain. GREAT So, now what??

So my questions are:

[1] What can I do to have less pain??

[2] Am I doomed to just keep trying medicine after medicine to see what works and what has intolerable side effects?

[3] What surgical options are there?


Thank you so much for reading all of this! I feel lost and stranded on a desert island. Does that sound crazy?? I'd love to get to know you and navigate this TN world together. I'm sorry that any of you are dealing with this. Man you all are TOUGH!!!!

macrobears or davisbears4


Welcome Megan,

My pain is considered atypical..I was diagnosed with Atypical Odontalgia..Pain in my teeth, like a horrible constant tooth ache.I was prescribed Amitriptyline right away..It worked..So I haven't had to try any other meds ...There are sure to be alot of others coming by to add a response who are more informed than I..I'm sorry you are in alot of pain..Hopefully you can find the right meds to help you.

I am too a wife and mommy to 14 year old twins and 9 yr old. I started with tn while I was pregnant with my 9 yr old. My symptoms felt like a tooth ache and some tingling around the mouth. First step dentist, nothing. 2nd root canal dr. Dr went ahead did root canal thinking I might have a hair line fracture in tooth. Went back pain still coming and going. 3rd step, oral surgeon. He did not think my problem was the teeth, but tn. He referred me to neurologist. Same drill, mri- no tumors or ms. I started with tegretol. Hated the side effects until body adjusted. Every 6 weeks blood check & follow up with dr medicine was helping. Went on couple of years. I felt good and stopped medicine. I was ok for2 years. Pain gradually came back. My medical referred me to another neurologist, my first one with each visit would do the basic neurology exam, prescribe medicine. Never explained the disorder, what to expect. I asked him is there a cure, said since you are eating and not loosing wait there is nothing else that can be done. No compassion. The 2nd neurologist was wonderful. Very caring, sympathy and stated several times it is a terrible pain. He also explained exactly what tn was. We tried several medicines. Side effects horrible. He switched me to lamitcal. Drug worked well up until 1 1/2 yrs ago. Neurologist tried botox. Did not help. He referred me to a pain management dr. First procedure he numb my face m pain returned 3 hours later after numbing started to wear off. Following 2 procedures radio frequency, did not help. I just had 2nd mri, do not know results, and scheduled with neuro surgeon 4/07. Sounds strange but I hope they find a blood vessel compressing against the nerve. Mvd ssurgery has the highest success ratio with long term pain relief. Or gamma knife. What I have read and other members state, try to avoid gamma knife. Possible partial paralysis among the face and if successful only 3 yrs of relief.

You stated you are a neuro nurse, have you talked to one of the Dr's? They should ge able help you with questions. What to expect, & treatments avail.

I wish you well. There are a lot of different meds and treatment procedures available. Stay positive!

Dr. Ken Casey - Trenton Michigan.

Book an appointment with him

after you email back and forth.

MVD surgery is cranial surgery... 2 nights in hospital - 2 weeks in bed sleeping.

95%+ success rate with him if you have TN1

Until then, get your hands on lidocaine patches and cut them up to put on your face - up to 12 hours help for many.

You can try many more meds

or you can get a better chance at remission.

Meds eventually stop working

This is progressive

I'm rushing this - but if you want to read his book - he is THE longest practicing MVD/TN surgeon on the planet earth.

Do NOT consider gamma or cyber knife unless Dr. Casey says its better to.

Otherwise your MVD chances go down....

email me at ■■■■■■■■■■■■■■■■■■■■

I'll give you his personal email

I had TN 1 year - been without pain for 2.

There is hope!