Trigeminal Neuralgia - The Big Pain in My Face

Trigeminal Neuralgia*: A chronic facial condition that is catagorized as an invisible illness. This condition involves damage to the fifth cranial nerve in the face. It is also known as Tic Douloureux. The Trigeminal Nerve has three branches that go across the face, with multiple little 'fingers' that grow from them. The branches are the Opthalmic which refers to the eyes, upper eyelids, and forehead, the Maxillary referring to the nerves that go through your cheeks, nose, lower eyelids, upper lip, and gums. The mandibular which goes through the lower part of your face that includes the jaw, lower lips, and gums. One or all branches can be involved in the pain reaction signals.

The pictures of me are: the day of surgery and in a lot of pain and the picture of me the very next day. It is really me!

Damage to the trigeminal nerve can originate from a blow to the head, possible familial genetics, dental procedures (the trigeminal nerve is the spot, in your mouth, where your dentist puts novocaine), and sometimes spontaneously. Other causes involving the Trigeminal Nerve are lupus, multiple sclerosis, stroke, ageing, tumors, and more. In some cases, the trigeminal nerve is pressing on a blood vessel, which is called vascular compression. This condition can affect children, women, men, and seniors. Doctors used to believe it only affected women over the age of 50, but that has been proved not to be true.

Depression can be a huge issue with sufferers of this intense debilitating pain. It is so constant and searing that many times sufferers can't see any way out. Sometimes it is so overwhelming, people commit suicide.

I developed Trigeminal Neuralgia when I was in my late fifties, after falling in a parking lot. Funny now, not funny then when I look back, I believed this fall to be the cause of my facial nerve injury. I was rushing to my local Barnes and Noble to pickup a children's book for my grandson. It was a nice summer day, I was wearing a pair of red Nike sandals that looked like the full sneaker had been left off and they just slid on over my foot like a sandal. The shoe had a nice chunky sole. I parked next to a small island, jumped out of my car, and in my usual haste, caught the sole against the cement at an angle which threw off my balance completely. I tried to rebalance but overcorrected, lost it, and did a faceplant on the tar of the parking lot. I fell flat and ungracefully onto my face. Luckily, this embarrassing indelicacy was not seen by anyone as people were already inside the store. I gathered myself and sat up, accessed my situation, brushed off, and saw my pocketbook a few feet away, (I say pocketbook because I grew up in New England and we called it by that term and not a purse!) I realized I scratched and broke my glasses, which had buffered my fall. I didn't think I had broken my nose, but I did have a fat lip and some scratches. As I sat thinking about what had just happened, I decided for myself, I was ok and probably didn't need to visit my primary. Of course, in hindsight, I should have touched base with him. At the time, I figured he would probably take a look and send me home with a "just call me if you experience anything else". So, I got up and walked into the store sheepishly hoping I pickup and pay for the book and no one would ask any questions.

A couple of months later, I had a funny little buzz in the middle of my cheek, on my right side, as I had my head on my pillow. The feeling reminded me of a kids' hand buzzer toy (you will probably remember if you are as old as I am) that you put in your palm and then went to shake your pals' hand and watch him jump when it buzzed, and then laugh at the reaction. I thought the feeling was odd at the time, but I just noted it and continued with my day.

Shortly after that small buzz, my facial pain got a lot worse. To say the pain was excruciating was an understatement. The pain has been described as having a hot poker stuck into your face and left there. Trigeminal pain is often categorized as the "worst pain known to man" and sometimes called the "suicide disease". The pain is so intense that eating, drinking, brushing your teeth, talking, smiling, a light touch, shaving (for men), and any kind of breeze, warm or cool, will make the pain more intense and any daily effort almost impossible. My pain focused on the right side of my face. Unfortunately for some, the pain will involve the nerve on both sides. The nerve does travel up the neck and splits to both sides of the head.

One of the worst, yet funniest exercises, in hindsight, was trying to brush my teeth daily. I had to steel my mind and body for the war at the sink. Deep breath, ugh, let's go. Up to the sink I went, slowly, because every step and small body vibration sent pain sensations through the face. I would grab my toothbrush, take a deep breath, close my eyes tight, and start quickly and furiously brushing, as best I could, rinse even quicker, and go back to bed and get into the 'excuse me while I go fetal' position to try to make the pain calm down or go away. I would hope and pray that the next day it would go away, but my body was playing a cruel joke on me. There are sufferers that don't brush because it is so excruciatingly difficult.

I was also working at my local Joanne store, in the framing department. I had to go out to the front desk to take care of customers when I was there by myself. On one hand, I would try my best to help design a piece as best I could, hoping the customer wouldn't ask many questions so I wouldn't have to talk and somehow manage to get through it. Sometimes, I would hold onto the counter to steady myself. I wanted to just hide in the back and do my work by myself. I was lucky my job was part time. So many people going through this have to work full time and also take care of families. That is a huge struggle.

Then I started my doctor adventures. I went on a quest, determined to find a solution to the pain. I refused to give in then and still refuse now. The standard first treatment, if the doctor diagnoses correctly at the time, is drugs. I was lucky to have a primary who moved to the U.S. from England, at the time, and she immediately knew what I was describing. My first drugs prescribed were gabapentin and tegretol. Neither prescriptive did much for me at all. I also tried several more, without success, to ease the pain. I was determined to find a solution.

I was a big believer in holistic approaches. I had been using chiropractic and went to my doctor seeking relief. He used adjustments and acupuncture for the pain, and would educate me by explaining what Chinese medicine believed in relation to the four seasons and how it affects the body. The different seasons showed how the pain would flow from milder in spring/summer to more severe in fall/winter. Winter being the worst season. The chiropractic was helpful to a point. I kept on reading and researching.

In the meantime, the pain kept throbbing away making life miserable. I still tried to have a semi-normal life. I went to see neurologists and neurosurgeons to no avail. I wasn't bad enough for surgery. I did find several types of non-invasive procedures that caught my interest. My husband, Bud, was with me all the way. He was my support and shoulder to lean on. That was about all he could do because the pain interfered in everything. He couldn't even hug me or give a light kiss to comfort me because it hurt!

The first surgical option I looked at was Microvascular Decompression. This is an invasive brain surgery. The surgery is done when a nerve is laying on a blood vessel and the pulsing of the blood hits the nerve and sends the pain shock wave. The micro-surgery is done under general anesthetic with an incision behind the ear and under the area of the occipital bone in the skull. The doctors then separate the nerve and vessel and place a tiny teflon sponge between the offenders to stop the pulsing. I was not a candidate for that particular brain surgery. Many patients are told they aren't candidates either, yet when a doctor gets inside the head, they may find there are compressions and proceed to repair them.

The second possibility was called Gamma Knife. ** This is a procedure where the patient has a metal frame screwed into the skull for immobilization. It reminds me of an ancient torture punishment but it is effective. The patient is then moved into the gamma machine which gives off multiple radiation pulses to target the nerve. The machine is similar to being moved into an MRI machine. I did not want that either because I was too vain. I didn't want holes drilled in my head. I also thought there would be too much radiation.

The third option, which I decided I wanted, is called the Cyberknife. *** It gives off a single directed beam of radiation. That too had the patient fitted with a mask. This mask was made from open weave plastic material warmed and then placed over my face to create a molded form, (there may be newer options of doing this as well). I laid on the table with my mask on and the technician then bolted it to the table to immobilize my head. The machine has a long robotic arm that is programmed to swing slowly back and forth, in an arc, around the head. There are different bored out cylinders to fit on the end of the arm, several different sizes for specific treatments. Since my treatment was directed at my temple, the cylinder with the smallest hole was used. I was on the table for approximately an hour, listening to my favorite music that I was able to bring along. The goal was not to sever the nerve but to disrupt it so it couldn't send the pain signals directly down the nerve. This amazing machine is used for many different kinds of treatments. Cancer is one of the most common.

The searing pain on the nerve comes from the loss of the myelin coating that covers the nerves in our bodies. Currently it is not possible to regrow the coating, but researchers are working on re-growing the myelin in experiments with mice.

There are also several other therapies that consist of needles being directly positioned into the nerves. Radio Frequency Thermal Lesioning or Nerve Block is one.****

The doctor starts the needle in the cheek, while the patient is sedated. It threads up the trigeminal nerve pathway until it reaches the back of the skull. The nerve fibers are then destroyed. Generally it leaves the patient with numbness but no pain. It is kind of scary looking as well.

I wasn't interested in that either procedure, as I had read they weren't particularly successful.

I chose Cyberknife surgery with the hope I would be one of the lucky people who comes out of the surgery with no pain or numbness, and it seemed the least invasive with the best end result. Right after the treatment with Cyberknife, my husband, son, and I were able to go to lunch and I was able to actually open my mouth without pain and enjoy eating a hamburger. That was heaven! I did have to continue with medications for a couple of months while my body processed the procedure. Unfortunately, approximately 2 1/2 years later, I developed an unusual numbness, tingling, and burning which is called parethesia in my right facial area. Again, doctors offer drugs to help. I didn't take that setback lying down either. I went back to researching everything I could find on how to treat numbness (I could converse with medical professionals like a peer as I educated myself so completely). It's difficult to help relieve trigeminal pain. I decided it was time to try more holistic approaches. I used chiropractic, now I added ayurvedic and homeopathic remedies. It couldn't hurt, but might help.

As I was getting really frustrated, I went for a psychic reading, again it couldn't hurt, but might help. I met my now good friend, Nancy, (nancylaporta.com) who is a medium, spiritualist, Reiki Master, herbalist, and Medical Intuitive. We became fast friends and she has been the person that has helped me a lot more when doctors couldn't. She has had fantastic results with me, and I have seen many fantastic results with other clients of hers. She has taught me to also use reiki, meditate, and center myself so I am more aware of me. I created boundaries to keep stressful situations away as well. I also found a primary to work with me as a partner. She is an MD but additionally holistic. Many times we try holistics before prescriptives, and she will use them if needed.

Today, almost 15 years later, I can function pretty well. My body is finally in balance. Because this body had been weakened by the nerve issue, it deteriorated other systems in my body. I depleted my thyroid so much that I lost a lot of weight and had to go and find therapies to put the body back in balance. I still have nagging issues with the face that I would like to wish away if I had a magic wand, but I know realistically they are here to stay. I used to tell my chiropractor to order me a new head, or that I have ordered one and it's on backlog. So, with meditation, centering, calmness, keeping boundaries, and being Self-ish, this word that I hyphenate is meaning to be kind to self and take care of myself first, which is different than selfish, and because I gave myself permission to do that, I am much healthier in body and spirit. I am incredibly lucky that I have been able to overcome much of what my body tried to pull on me, the dirty trickster. I wish anyone, who is in the throes of this condition, healing thoughts and wellness. I hope you find a way to relief. I hope I have offered some insights into how you too can find ways to help yourself. Always be your own advocate. Doctors aren't gods, they are human and will welcome an informed patient. Always write your list of questions and take them with you. Take a second set of 'ears' with you as well, so what you don't process your advocate will.

The following organizations are very helpful for information.

The Facing Facial Pain Research Organization - facingfacialpain.org

Trigeminal Neuralgia and Me - tnnme.com

Facebook - there are many pages started by TN sufferers that have a wealth of information of how to navigate. I joined several and found them educational and friendly.

The Facial Pain organization has quarterly meetings around the country for patients and families. They bring in many different medical professionals, doctors, dentists, therapists, for informative lectures and question periods.

The above are all accessible via Facebook and Googling.

*I am not dispensing medical information. I am only telling my experiences and what I learned in dealing with Trigeminal Neuralgia for the last 15 years.

**Elmhurst Hospital, Illinois - Cyberknife Machine picture

***Mayoclinic.org. - Gamma Knife diagram

****Neurosurgery.ufl.edu - Radio Frequency Thermal Lesioning diagram

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