Trigeminal Neuralgia

It first started as sensitive teeth, but only on the left side. Sensitive to cold and hot, so I just avoided that side of my mouth. I would purposely place food and drinks towards the right side of my mouth. I was pregnant with my 7th child, so decided to wait until after delivery to go to the dentist.

After he was born, I ended up in the emergency room with extreme pain in my left cheek and teeth. They told me it must be dental related, so advised me to see a dentist. I visited the dentist and they couldn't find anything wrong with my teeth or gums. X-rays showed nothing wrong with the roots, either. I again had some extreme pain and this time the ER doctor wanted to try a nerve block like dentists use when they are working on your teeth. As the pain was so bad, I was willing to try anything. The nerve block didn't work. It took the edge off of one area, but the pain was still there.

The pain was like there was a vice grip on my cheek bone. Like there was lightening in my face. Like their was burning flesh and gums or like someone had just hit my eyebrow with a metal hammer. It was all of these, one of these, or some of these during these flairs. When it was hitting my teeth or gums, I could trace a line down the middle of the roof of my mouth where the pain ended. I wasn't sure what triggered it in the beginning, but soon realized it could be anything from talking, drinking, eating or a slight wind on my face. It would even happen if fabric from a shirt or blanket touched my face. Left side only.

It didn't happen all the time. There was no rhyme or reason to it. It was random in the beginning. No explanations and no diagnosis. During a particularly bad flair, I went, again, to the ER and I finally heard a possible diagnosis. He said, "I know what you have. Its Trigeminal Neuralgia." My first thought - OK, GOOD! HOW DO WE FIX IT??

I was started on carbamazepine - a medication typically used for seizure disorders and told to follow up with my primary provider. I scheduled an appointment with my doctor but I also started to immediately dive into learning what this was and if it made sense for my symptoms. Trigeminal Neuralgia (TN) is a chronic pain condition that affects the Trigeminal nerve in the face. The trigeminal nerve has 3 branches, 1 branch goes towards your lower jaw, 1 towards your cheek area and 1 towards your forehead. Also called Tic Douloureux, it is rare as it affects less than 200,000 people per year.

It was great having a name and diagnosis, but it was grim looking at treatment options and outcomes. Trigeminal Neuralgia was at one time also called the "Suicide Disease" as the pain is so bad and treatment ineffective, that people suffering from TN would commit suicide to escape. Because it is a nerve disease, typical pain medications do nothing to dull it. Neuropathy and seizure medications along with depression meds are your first line with TN. With most of these medications, it can take a week or 2 to feel any relief. And they often stop working after years of use, pushing the sufferers to find new medications.

My doctors started me on Carbamazepine and gabapentin and gave me a referral to neurology. The medications appeared to help very well. I stopped having bad flairs after awhile and only felt the occasionally lightening or pressure in my face. The side effects of the medications were difficult to manage though. I felt slow, dumb, clumsy and drunk at times. I worked as a nurse in a Chemical Dependency treatment center and would often wait to take my gabapentin until I got to work as it made me feel drunk. Not the best outcome for staff working with persons dealing with alcohol and drug addiction issues. When I had 3 near miss medication errors, I decided it was time to stop working. I could no longer trust my brain to keep others safe. I was tired, run down and defeated. I either take these medications to stop the pain or stop the medications to regain my brain.

After a year or so on the medications, I got to the point where I didn't feel any breakthrough pain. I had heard of "remission" and thought maybe I had gone into remission. I decided to stop my medications to see what happened. After a week, I was in excruciating pain again, in the emergency room, begging for relief. I knew from my research what to ask for at the ER. I needed Dilaudid, Benadryl and Toradol. None of this was to treat the pain itself, it made me sleep and attempted to reduce inflammation. This combination would make me very tired and make me sleep for several hours and during sleep, TN rarely acts up. I would get my trifecta and go home to bed. For 9 full days, I suffered through the flairs, one after another all day long while I was awake. During this time I was in the ER 3 times for my "cocktail". I was back on my medications, but it would take a week or more for them to "kick in" again and give relief.

During this time I started seeing a neurologist. He thought my TN was very well controlled on the current medications and didn't see any reason to look at other options. I told him I was no longer able to work as a nurse, I was having falls regularly and didn't have a way to contribute financially to my family. Nothing. NO suggestions, no options, refused a neurosurgeon referral, nothing. He told me LOTS of people would be happy to be in my position and have the medications cover their symptoms. I was not happy. I was not able to live. I was, in-fact, very unhappy, depressed, tired and dull.

When I shared this information with my primary doctor, she said, "I can give you a referral." I hadn't even thought of asking her and it was so simple. I was scheduled to see the Nurse Practitioner of the neurosurgeon within 5 weeks. She looked at my records, asked a million questions and decided I was definitely a candidate for surgery. Microvascular decompression (MVD) surgery. During the MRI I had of my brain, they had discovered that I had a large blood vessel pressing against my trigeminal nerve. With each pulse of my heartbeat it would press on my nerve. This pressing causes the myelin sheath to wear thin or wear away completely. Any further pressing causes irritation of the nerve. During the surgery they would place a Teflon "pillow" between that blood vessel and the nerve, protecting it from any further damage and irritation. The NP asked if I wanted the "older" surgeon who didn't shave your head or the "younger" surgeon who routinely shaved the surgical site. I asked her if she had to have this surgery, who would she prefer operate on her? She very quietly stated that they were both very good surgeons, but she would pick the older surgeon. She felt like he had perfected his technique, had more experience and had a very good record.

2 weeks later, I met with the surgeon. We went over the usual questions and answers. And I had 1 more question..."what happens if it comes back? Do you go back in and fix it again?" His answer set me at ease. He said he has never had to go back in on one of his patients. He has had to fix other surgeons work, but never his own. I felt at ease and comfortable with my decision and decided to proceed with MVD.

I had MVD surgery on November 29, 2017. Six weeks later, I was completely weaned off of all medications and am still symptom free almost 4 years later. I have a large scar behind my left ear that peeks out of my hairline down my neck, but other than that, no one would know I have had brain surgery. Every once in a while I get nervous with any little twinge of pain that is probably normal. So far, I am TN free. I went back to school, started working as a nurse again and am living life!