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Trigeminal Neuralgia: How I Survived the Worst Pain Ever

A journalist, Marcelle writes to raise awareness for trigeminal neuralgia, a condition she was diagnosed with in 2013.

This illustration shows the trigeminal nerve's three major branches extending into the facial areas.

This illustration shows the trigeminal nerve's three major branches extending into the facial areas.

I survived what many medical experts agree is the "worst pain known to humankind." Here I share my personal story ending with a successful microvascular decompression (MVD) procedure, which is a type of brain surgery. However, I am not cured.

I look at my life now through a different perspective and cherish every day. I lack medical training, so I cannot offer true medical advice or recommend any specific treatment. What I can do, however, is share my own patient experience with this disease, detail what worked for me, offer support avenues and resources I found on my journey, and just maybe provide some hope to those warrior patients suffering each day from this condition.

Disclaimer: I am not a medical professional. This account is from my personal experience as a patient. If you are experiencing facial pain symptoms, please seek out the expertise of a medical professional.

"The Scream," by Edvard Munch, is often used as a visual symbol in depicting the facial pain of trigeminal neuralgia.

"The Scream," by Edvard Munch, is often used as a visual symbol in depicting the facial pain of trigeminal neuralgia.

What Is Trigeminal Neuralgia?

Trigeminal neuralgia (TN) is a debilitating nerve pain disorder often described as the most excruciating pain known to humankind. TN causes facial pain, usually affecting one side of the face, where severe, electric shock-like pain hits typically in the lower jaw area, teeth, gums, and cheek. The pain can sometimes be felt in the area around the nose, ear, eye, and forehead. Irritation of the trigeminal nerve causes the pain, usually by a compressing blood vessel or vessels, and less commonly by a tumor, multiple sclerosis or other abnormality. It is sometimes referred to as the "suicide disease," based on historical context at a time before medical treatments existed, when patients had little or no options.

This illustration shows the distribution of the three major branches of the trigeminal nerve that feed the facial area. Pain may be experienced in any or all these areas. The pain often occurs in waves or "attacks," lasting anywhere from a few seconds to a few minutes and sometimes longer or ongoing. Pain is easily triggered by simple acts such as eating, talking, shaving, teeth brushing, smiling, putting on makeup, touching one's face, or even a gentle breeze.

The video below shows Neil Martin, M.D., FAANS, and chairman of the UCLA Department of Neurosurgery, discussing trigeminal neuralgia in detail, including symptoms, causes, and treatments.

My Trigeminal Neuralgia Story

The words below are my personal story of my experience as a patient with trigeminal neuralgia starting in 2013. I am fortunate that I no longer experience the severe pain symptoms, nor the ill side effects of the medication, but the pain cannot escape my memory. I also live knowing that the pain could return.

My First Shocking Pain

On a cold, Sunday afternoon, what felt like a sudden bolt of lightening struck my face out of nowhere while standing in my kitchen (patients often remember the exact moment and location of their first pain). I dropped to my knees. The excruciating, electric-like pain attacked the left side of my face—my teeth, my gums, my cheek, my jaw. It felt as if a dentist was drilling all of my upper and lower teeth on the left side at the same time, without novocaine! At the same time, it felt like someone was cattle-prodding my cheek and jaw. I honestly felt like I was dying. If I had been standing on a cliff at that moment, I would have jumped off to escape. Then, as quickly as it came on, it disappeared. It returned a few minutes later with a vengeance, disappeared again, came back and on and on throughout the day. I lay curled up on my floor waiting for each horrific session to pass.

Doctor or Dentist?

I found myself at my family doctor's office the next morning. I thought to go to the dentist first since it seemed my pain came from my teeth and then radiated out but my dentist's office was closed on Mondays. That turned out to be the best thing that could have happened to me that day as so many TN patients head to their dentist and often times have teeth pulled to relieve the pain to no avail.

After punching away on her laptop, my doctor figured out that my pain might be caused by this thing called Trigeminal Neuralgia or possibly a few other things I’d never heard of. She referred me to a Neurologist to figure it out. She prescribed a couple of strong pain medicines to get me through until my appointment; they didn’t work.

Diagnosing TN Early

My diagnosis came in just a few days. Most patients with this condition wait months or years for a diagnosis. Often, because the pain targets the teeth and jaw, patients end up in a dentist chair, having teeth pulled to relieve the pain. The problem is that pulling teeth, root canals, and so on do not work. The tooth is gone but the pain remains. Many dentists and even doctors do not have experience diagnosing or treating this condition since it is a very rare disease. Getting diagnosed is half the battle—the first battle I won in this long ordeal.

My First Neurologist

In horrible pain, I struggled to sit waiting in the Neurologists office. I was desperate for an answer. It took him all of ten minutes to diagnose me with something that at the time I could not even pronounce—trigeminal neuralgia. I wanted answers. I wanted the pain to go away. I wanted this problem fixed. Here are the possible scenarios he proposed were the cause of this condition and its accompanying horrific pain:

  • Shingles
  • Brain tumor
  • Multiple sclerosis
  • None of the above
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He scheduled an MRI to diagnose the cause of my new affliction. In the meantime, he wrote me a prescription for oxcarbazepine (Trileptal), an anti-seizure medication that he assured would work well to control the pain.

At the pharmacy, I can remember being crunched over holding my face in pain through attacks with as much composure as I could fathom. The neurologist was right. The next day, the medication started to work and after about a week or so, the pain was mostly under control. Unfortunately, the medication came with initial side effects of nausea and double vision the first week but I was grateful the pain started to subside. After the initial side effects settled down and the pain was tolerable, I began to search for answers.

My Research on Trigeminal Neuralgia

I scoured the Web, finding all that I could about this strange new diagnosis. Everything I discovered looked dim.

I stumbled upon an online patient support website at www.livingwithfacialpain.org. It scared me initially. I read the descriptions of pain, the years suffering, the terrible medication side effects, the daunting fixes, the failed fixes. The truth is, however, that this online support group ended up being my savior in the end. The advice, recommendations, and support I received helped to get me through my journey to conquer the pain. I still visit this website today to offer my support on the other side.

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"Normal" MRI Results

Two different neurologists sent me to have an MRI. In both cases, an inserted IV provided contrast during the procedure. My fear prior to my first MRI was somewhat misfounded as the experience was not awful. A movie played for my first MRI and Pandora carried me through my second.

The results read "normal" in both cases, meaning that I did not appear to have a tumor, shingles or multiple sclerosis, or any other problem. Good news but also bad news since no cause was suggested. What I did know by that point and after my extensive research is that in most cases, classic symptom TN is caused by a blood vessel or vessels compressing the trigeminal nerve. Neither radiologist and neither neurologist saw a compression.

Note: After my first MRI, I never received a call from my neurologist. Only after I contacted the office a couple of times was I told about my "normal" results. The office said that since my results were "normal" they felt no need to call me. Soon after that my neurologist "gave up on me" as my medication doses got higher. Someone on his staff told me he decided to shift my care over to a pain doctor. The lesson I learned from this is that I was essentially on my own, medically speaking, and that I had to learn all I could about this disease and take charge. I did see the pain doctor, just once. He told me he couldn't do anything for me and couldn't prescribe medicine but that I should "run to MVD surgery." More on that later.

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Anti-Seizure Medications for Trigeminal Neuralgia

Anti-seizure medications are no fun. This category of drugs serves as the gold standard for treating the pain of TN along with a host of other disorders and diseases. I now live in awe of individuals who suffer with epilepsy, especially children, knowing what they go through with these medication side effects.

Two anti-seizure medications became my saviors from unfathomable pain but wrecked my quality of life. I spent four months first on Oxcarbazepine (Trileptal) and later switched to Carbamazepine XR (Tegretol).

Oxcarbazepine (Trileptal)

I took Oxcarbazepine for the first four months of my treatment. My initial dose was 300mg per day. I experienced nausea and some double vision, which subsided in the first week. The medicine controlled my pain fairly well, initially. I had times that were pain free or nearly pain free. After a few weeks though, the pain began to slowly breakthrough, inching up the pain scale to the point where I needed a higher dose. My neurologist obliged and that higher dose would do the trick again for a few weeks. This cycle continued until the point that I took a total of 1500mg per day, spread out throughout the day.

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As I continued to increase my doses, my side effects evolved to include many that are on the commonly experienced list below. The worst was my total lack of energy and concentration, and my inability to remember much of anything. I also experienced shakiness and toward the end of my time on this medication, I started having "episodes" that felt like I was taking an illicit drug trip. I experienced a dizzy, loopy, and an almost "out-of-body" experience where I became almost unaware of what was going on around me. This scared me. I switched neurologists at that time and my new neurologist explained that the high dose I was taking created "drug dumps" into my system and that is why I was having these frequent events. Time to switch meds.

The table below highlights only a sample of the more common and uncommon side effects patients experience on this medication.

Oxcarbazepine Side Effects

Source: WebMD

CommonInfrequent

Acute infection

Abnormally Low Blood Pressure

Sensation of Spinning or Whirling

Abnormal Recording of Electrical Activity of the Brain

Dizzy

Decrease in Sharpness of Vision

Double Vision

Fever

Drowsiness

Fit

Head Pain

Infection

Involuntary Eye Movement

Low Amount of Sodium in Blood

Mood Changes

Toxic Effect on Brain or Spinal Cord Function

Stomach Cramps

Suicidal Thoughts

Uncoordinated

 

Increased Sensitivity to Sunlight

 

Decreases Effectiveness of Birth Control Pills

 

Drug Interactions

 

trigeminal-neuralgia-how-i-survived-the-suicide-disease

Carbamazepine XR (Tegretol)

My new neurologist (100 times better than my first neurologist) carefully transitioned me off of Oxcarbazepine and onto an extended release formula of Carbamazepine. He explained that the extended release version of this medication would help me avoid the "drug dump" symptoms I experienced. This proved true but the common side effects I experienced on Oxcarbazepine were even worse on the Carbamazepine.

My Drug Interaction with Synthroid

The medicine Synthroid controls my diagnosed hypothyroidism well. While I took Carbamazepine XR, my body went back into full symptoms of hypothyroidism as the drug interacted with my body's ability to absorb the Synthroid (confirmed by my neurologist). After my surgery, when I came off the anti-seizure medication, my thyroid numbers showed I was hypothyroid and it took almost a full year adjusting my Synthroid doses back and forth to stabilize my numbers and eliminate my symptoms.

My memory and cognitive abilities were so impaired that I could barely function. I once attempted to drive a short distance to a good friends house and had to stop the car in the middle of the trip because I could not remember how to get to her home (I'd been there hundreds of times). My family went on a week long beach vacation during that time and I have scattered memories at best, as if I took this vacation some thirty years ago. Every day was a struggle, especially remembering to take my six pills a day at regular intervals to stay on top of the pain.

Once again, I meandered through the pattern of a few good weeks of pain control followed by breakthrough pain and increased doses. By the end of my Carbamazepine journey, I was taking 1200mg each day. On top of that, I was managing some bad breakthrough pain with Vicadin. Honestly, it did not help the pain but it helped me to escape from the pain now and then when it was at its worst.

The table below highlights a small sample of the more common and infrequent side effects patients experience on this medication. Note that this mediation is a Class D drug during pregnancy.

Carbamazepine Side Effects

Source: WebMD

CommonInfrequent

Blurred Vision

Low Amount of Sodium in the Blood

Double Vision

Lupus-Like Syndrome

Involuntary Eye Movement

Problem Behavior

Uncoordinated

Reaction due to an Allergy

Confussed

Stevens-Johnson Syndrome

Dizzy

Syndrome of Inappropriate Antidiuretic Hormone Secretion

Drowsiness

Toxic Epidermal Necrolysis

Throwing Up

 

Increased Sensitivity to Sunlight

 

Decreases Effectiveness of Birth Control Pills

 

Drug Interactions

 

Striking Back

In my hours of research, I found the book Striking Back: A Layman's Guide to Facial Pain, written in laymen terms for TN patients. A well-respected neurosurgeon in the field of TN, Dr. Kenneth E. Casey, co-authored the book together with TN patient, George Weigel. I read it cover to cover within weeks of my diagnosis. It became my "bible" that not only educated me on my disease and all the treatments, but gave me hope and led me on my path towards conquering my debilitating pain. The book linked above is the updated edition from 2019.

Microvascular Decompression (MVD) Brain Surgery Decision

No cure exists for TN at this time, but thankfully several surgical treatments can treat or reduce TN symptoms outside of medications. Most patients seek out one of these treatments. After researching and educating myself on the disease and treatments, and visiting countless doctors, I made a huge decision. I decided to succumb to having a hole drilled in my skull so that a neurosurgeon could "fix" the problem. The surgery called Microvascular Decompression (MVD) is the only treatment that solves the root problem of nerve compression.

There are risks with this surgery, as with all surgeries. I carefully considered the risks and whether or not they outweighed the possible benefit of being pain-free. Risks included a CSF leak, hearing loss in my left ear (the side of my pain), permanent numbness, a stroke, and even death. The risks were all very small and of course there was the slightly larger risk that after going through this big surgery, I might not be happy with the results. I might still be in pain.

I pondered several "what if" scenarios:

  • What if the surgery works but I lose hearing in my left ear?
  • What if I suffer a surgical complication?
  • What if I'm left with permanent numbness on my surgery side?
  • What if the surgery is unsuccessful?
  • And worst of all, what if the surgery is unsuccessful plus I lose hearing in my left ear and suffer one or more surgical complications?

I had to make sure that I would not regret my decision to have an MVD. Ultimately, I decided my biggest regret would be not taking that leap of faith to have the surgery. I was more afraid of living a life in pain on the medications than I was of the surgery and its small risk of complications.

So, a few months into this disease, I decided that microvascular decompression surgery (MVD) was my answer.

I learned that courage was not the absence of fear, but the triumph over it.

— Nelson Mandela

Find the Best Neurosurgeon

I began visiting neurosurgeons a few months into my diagnosis. I knew so much about my disease already and I was interested to learn even more about the surgical treatments. I also knew that I could not live on the medications indefinitely. This disease is progressive and at some point, the medications stop working.

I saw three neurosurgeons, all experienced with Trigeminal Neuralgia treatments and surgeries. I had very different experiences and advice with all three. I realized how important it is to get a second opinion and even a third when making medical decisions. The first two neurosurgeons I saw were local. Here is a summary of those visits.

First Neurosurgeon Visit

The doctor said he did not see anything on my MRI that looked like a blood vessel compressing my trigeminal nerve. He explained the various surgical treatments but seemed to steer me away from having an MVD surgery and instead to the Gamma Knife procedure that uses radiation to damage the nerve so that pain signals are not felt. He suggested that I drink more coffee to combat the severe fatigue I battled while on the medication. No follow-up was suggested.

Second Neurosurgeon Visit

My diagnosis was also confirmed and this doctor did spend quite a bit of time with me, explaining the disease and treatments. He said he saw something suspicious on my MRI. He said I was a good candidate for MVD surgery but suggested maybe I wait a few years, trying all the various medications first, as MVD surgery had its risks.

Third Neurosurgeon Visit

I decided to travel out-of-state to visit a neurosurgeon that was highly respected as an expert in the field of facial pain. This surgeon by far had the most experience in treating TN surgically. His diagnosis was more thorough and he provided details about the treatments that were new to me. He easily saw two compressions on my MRI and actually showed me the compressions in his office. His surgical complication statistics were lower than what the second neurosurgeon had told me. He had done this MVD surgery many more times and had learned from the father of MVD surgeries, Dr. Peter Janetta. Over the years, he has worked to perfect his surgical techniques. I had found my neurosurgeon, Dr. Ken Casey.

My Microvascular Decompression Surgery (MVD)

I knew at four months into this disease that microvascular decompression surgery (MVD) was my answer. The surgery involves moving an offending vessel or vessels off the trigeminal nerve and placing a pad or sponge to prevent the vessel or vessels from coming back in contact with the nerve. To access the nerve and vessels, a hole is drilled into the skull near the brain stem. It is the most invasive TN treatment and does not fit every patient. Fortunately for me, I was a good candidate for this surgery.

Renowned neurosurgeon Dr. Peter Janetta developed MVD surgery as a way to attack the root cause of TN pain more than four decades ago. Initially, the medical community challenged this invasive surgery for TN, especially since less invasive treatments existed. Today, many neurosurgeons believe that this type of surgery offers the best chance for long-term pain relief. It is also the only surgical treatment that goes to the root of the problem for most TN patients and does not aim to damage the nerve. This was important to me, to keep my nerve intact, so that one day, when a cure comes, my nerve will be in a healthy state.

Day One After MVD Surgery

trigeminal-neuralgia-how-i-survived-the-suicide-disease

My surgery lasted a few hours and I spent two nights in the hospital recovering. The first night was in intensive care and the second night in a regular room. I felt overjoyed when I woke up and felt no TN pain. My surgeon continued my high doses of Carbamazepine from pre-surgery in case my nerve needed some time to settle down and also because I needed to be slowly weened off that high dose. I knew my pain had left though because the weeks before surgery, I experienced progressively worse breakthrough pain. My dose was already too high to increase and I was unwilling to layer in other medications for those short weeks before surgery. I could see the light at the end of my tunnel so I soldiered through.

The first 24 hours after surgery wreaked some havoc on my body. Nausea took over non-stop and as I was not allowed any water, I dry heaved continuously. My head hurt, too, but for me, the nausea was the worst of it all. The second 24 hours of recovery was not so bad and after two nights, I was ready to leave. I spent an extra two nights in a rental facility near the hospital since I had traveled out of state and then after my surgeon checked me out and answered all my questions, we made the long drive home.

Overall, my recovery took about six weeks. I backed off prescription pain meds after the first week and after the first two weeks, I was almost back to feeling like myself but it took another month or so to get my energy back and be ready to start my life free from the horrible pain I survived.

Two Weeks After MVD Surgery

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MVD Surgery Success

MVD surgery as a treatment for TN provides the greatest long-term pain relief solution for patients. Medical literature points to success rates of 85 to 95 percent and maybe as high as 98 percent initially after surgery. 1 Patients often experience immediate pain relief as I did. Pain can return after MVD surgery but often that happens soon after surgery, with about 6 percent of patients getting their pain back in the first year after surgery. Beyond that, the pain returns about 3 percent of the time in years two through four after surgery, 2 percent after five through nine years, and less than 1 percent from the 10th year forward.2 In truth, there is not much research in long-term pain relief after MVD surgery beyond 10 years. Many TN patients, however, remain pain-free after their MVD surgeries for many years beyond that. It's wonderful when those who have remained pain free after MVD stay involved in support groups. It is the best hope you can give patients living through it. I heard from one man that had an MVD 35 years ago and still lives with no pain.

The Indianapolis Power & Light building in downtown Indianapolis lights up for the International Trigeminal Awareness Day on October 7th, 2015.

The Indianapolis Power & Light building in downtown Indianapolis lights up for the International Trigeminal Awareness Day on October 7th, 2015.

My Life Now

Now in 2021, eight years have passed since my diagnosis and more than seven years since my successful MVD surgery. I am blessed that I no longer suffer from the painful symptoms of trigeminal neuralgia. I am grateful that I no longer take the medications that interfered so drastically with my day-to-day life. I thank my talented neurosurgeon, my team of doctors that saw me through many months of pain, my online TN support group, my offline support group of friends, and mostly my family, my biggest supporters and cheerleaders throughout this ordeal. I LIVE better now than I did before my diagnosis. Every day pain-free is a gift.

I believe that Trigeminal Neuralgia did not enter my life randomly. I feel a purpose and am compelled to stay involved in the lives of others who still suffer symptoms every day. Compassion and support reached out to me when I was first diagnosed, throughout my journey, and through my big surgery. Many prayers were said on my behalf and I felt them. A guiding hand held me up and drove me to find the answers and solution I did. I now pray for the other patients on their own journeys and offer support when and where I can.

Emotions surfaced as I wrote this article. That period in my life when I suffered from the pain of trigeminal neuralgia was dark and often felt hopeless. I found my light through this disease and want to give that to others. Please watch the video below focusing on the importance of finding a cure and then read on to find out how you can help.

Facial Pain Research Foundation Public Service Announcement - Tony Shaloub and Brooke Adams

Finding a Cure for Trigeminal Neuralgia

I am no longer in pain; however, I am not "cured." No cure exists for this awful condition. My MVD surgery fixed the problem of arteries compressing my nerve but did not cure me. The surgery offers me long-term pain relief—but my pain could return someday. There may be a genetic connection based on current research, so I worry that this could be passed down to my daughters or future grandchildren. Finding a cure is important for me personally and important to all those who are suffering from TN, or love someone who suffers.

There is hope. The Facial Pain Research Foundation, a not-for-profit organization, is actively working to find a cure for TN, as well as other nerve pain. An international consortium of scientists are tasked with this mission, often donating their time and working with limited resources.

All funding comes from donations, gifts, and fundraising for this all-volunteer organization. TN patients have stepped up to lead many local fundraising efforts. A "Race to Save Face" in Dover, Ohio, for example, raised $11,000 for The Facial Pain Foundation. Large matching donations from individuals or corporations have come in but much more is needed. Every donation counts.

Finding a cure is essential and so is raising awareness for this horrible disease. October 7th is the International Trigeminal Awareness Day and in the few years since its start, landmarks and buildings from around the world have lit up teal on that day to recognize TN. I have included a picture of the Indianapolis Power & Light building in this article. Please let others know what you've learned about this disease. It might help someone identify the symptoms of a loved one and get the proper care.

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Trigeminal Neuralgia Resources

  • The Facial Pain Association
    This not-for-profit association works as an advocate for patients living with TN and related neuropathic facial pain.
  • The Facial Pain Research Foundation
    A division of The Facial Pain Association, this foundation is working to find a cure for TN.
  • Living with Facial Pain
    Provides information, support, and friendship for TN sufferers and their loved ones.
  • TNnME
    Sign the petition for the World Health Organization to add TN to its "Health Topics