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      TN and Me:

 

A 15-Year Odyssey 

 

 By Mervyn Rothstein 

 

 Mervyn Rothstein and Michael Pasternak

 

Mervyn Rothstein was a writer and editor at The New York Times from 1981 to 2011. He has written for Playbill and Playbill.com for 29 years and was a member of the Nominating Committee for Broadway’s Tony Awards from 2011 to 2014. He is a longtime volunteer writer for the Facial Pain Research Foundation. This essay is offered with the intent of giving readers some idea of what one person’s experience with Trigeminal Neuralgia has been like, and in the hope that it will help persuade them to be a part of finding a cure.  

In the beginning, there was the pain.  It was spring 2005. I was sitting at my desk at The New York Times editing an article for that Sunday’s Real Estate News section. As soon as I finished, I could leave work and go home and continue packing for a much anticipated weeklong vacation in Paris. My wife, Ruth, and I were leaving the next afternoon.  And then I suddenly felt a sharp, piercing electric shock in my teeth and gums on the bottom right side of my face. And then another. And another. 

 “Oh, no, a toothache,” I thought. I didn’t know, because I had no idea it existed, that I was experiencing the first symptoms of Trigeminal Neuralgia, the kind of agony typical of the disease, one of the most painful illnesses known to humanity. 

 It is said that the pain is the most torturous that people can feel. There’s a reason Trigeminal Neuralgia is nicknamed the Suicide Disease — for those who can get no relief, death becomes a viable option. No known cure exists; surgeries, treatments and medications exist, but their success can be somewhat limited and often not long-lasting. 

The timing couldn’t have been worse for a toothache, I thought. Have to pack. No time for a dentist. If it continues or gets worse, I’ll find a dentist in Paris. Or maybe it’ll go away on its own. But of course it didn’t — at least not for long. 

And so began my complex odyssey, one somewhat akin to Ulysses’ in Homer’s epic poem. There were adventures and misadventures, pain and suffering, and, finally, a return to near normalcy. This is my tale of that odyssey, its ups and downs, perils and pitfalls, hopes denied and hopes achieved. 

 


The pain disappeared that night, and much of the next day. But on the overnight flight to France, it hinted at a return, though it stayed in the background. On our first full y in Paris, it came back like bolts of lightning, especially when I spoke. Syllables would be riddled with shocks, words and sentences surrounded by electric shock. Plosives — the letters p, t, k, b, d, g — particularly agonizing. I was determined to plow ahead, going to museums, visiting Paris’ beautiful parks and gardens, walking along the River Seine, and dining out — although the act of chewing might increase the agony. I love to take photos in Paris, and doing so, occupying my mind with an activity, made me less aware of the problem. But it was always there. 

I realized that I needed to see a dentist. I emailed colleagues in The Times’ Paris Bureau to ask for a recommendation, hopefully someone who spoke English. They suggested a dentist they knew, an American expatriate whose office was just off the Champs-Élysées, not far from the Arc de Triomphe. I called and made an appointment with — let’s call him Dr  Smith — for the next day. I’ve always enjoyed looking at the Arc de Triomphe in closeup, but I wished the circumstances had been different. 

Dr. Smith seemed a good man, and a good dentist. His office was modern, efficient and well-designed.  But he didn’t have a clue about what was happening to me. He checked me out, took an x-ray, said he couldn’t find anything wrong, although he said he thought it was a tooth.   He suggested I take acetaminophen or ibuprofen until I returned to New York — five days later — and saw my regular dentist. So that’s what I did. 

Those painkillers, as anyone with TN knows, didn’t do anything to kill the pain, but as soon as I returned I made an appointment with my longtime dentist. And I went right back to my job. 

My family knew that I was suffering, but I tried hard to keep the extent and frequency from them so they might worry a little less. Downplaying it to some extent also helped me to cope — at times I could almost pretend it wasn’t as bad as it was. But when I would wake up every morning and soon be conscious of what was going to be a basically dreadful part of my day — well, let’s just say it wasn’t easy.  

My regular dentist was also a good man and a fine practitioner. He examined me, took an x-ray and decided that what I needed was root canal surgery on one of the teeth in the area of pain. So I dutifully went the same day to the endodontist he recommended and endured the 90-minute procedure. After the root canal, and the Novocaine, the pain vanished for a while, but about a week later it returned full force — stronger and more agonizing than before. It was a bright, sunny day. I was walking home from work. I took out my cellphone and called my dentist. He told me to call the endodontist.

I told the endodontist what was happening. His immediate response was: “I think you might have Trigeminal Neuralgia.”

What? What was Trigeminal Neuralgia? I figured it had something to do with the nervous system. But what? And my mouth?

My teeth? So I looked up definitions. Here’s what the Mayo Clinic says:

“Trigeminal Neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have Trigeminal Neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.”

And what causes it? Also from the Mayo Clinic: “ In Trigeminal Neuralgia, also called tic douloureux, the trigeminal nerve's function is disrupted. Usually, the problem is contact between a normal blood vessel — in this case, an artery or a vein — and the trigeminal nerve at the base of your brain. This contact puts pressure on the nerve and causes it to malfunction.”

The disease even has a famous sufferer: Captain Ahab, who obsessively sought the giant white whale in Moby-Dick. (In the Herman Melville novel it’s colloquially called “Tic-Dolly-row.”)I had actually been very lucky.

TN sufferers have been known to have four or five root canals or as many tooth extractions before they encounter someone knowledgeable enough to understand what is happening. My endodontist had figured it out right away. 

He told me he knew a specialist in dental and mouth pain who often dealt with TN. He gave me the name and phone number and I called right away and made an appointment — for the next week, the first available opening.   

I showed up for the appointment and had 180-degree x-rays taken of my mouth. It was probably TN, the dental pain specialist said, but he couldn’t be sure. So he sent me for an MRI to see if what was causing my woes was in fact a brain tumor — a thought that chilled me. 

But the MRI revealed that there was no tumor, so he put me on

Trileptal (Oxcarbazepine), an anti-epileptic drug that is also used to inhibit TN pain — and sometimes works. It helped to some extent, enough to make life relatively bearable, if still quite painful. The headaches and drowsiness that were side effects of the medication were difficult to deal with and affected both my work and my quality of life, but they eventually largely faded away. 

(Through it all, I continued going to work. I had decided immediately that if I was going to suffer continual pain I would be better off at work focusing on writing and editing, to try take my mind off my troubles, than staying home and thinking of nothing else but discomfort. Throughout the entire time I suffered with TN, except for visits to doctors and for procedures, I was not absent even one day. In the office, I was in pain, but I was determined I wouldn’t let it prevent me from accomplishing what I wanted and needed to accomplish. There’s a video I worked on for the Times website — you can look it up on Google — about the life of the playwright Neil Simon that features Simon himself talking about his career. It was designed to be seen as part of his obituary — it’s part of a series called The Last Word — and that’s when it was first shown. It was filmed years earlier — and the unseen and unheard Times writer just to the side of the camera who asked him the questions he is answering is me. And every word I spoke of every question brought me TN pain.

Back again in 2005, summer was going strong. My wife and I had rented a place near the ocean in Long Beach on Long Island, where we went every weekend, and for three weeks’ vacation in August. Again, I was determined not to let my TN, however difficult, overly affect my life. I enjoyed the beach. Long Beach has a two-mile-long boardwalk, and every weekend morning I would walk it round trip, alone or with my younger brother, who lived nearby. As we walked and talked, every word that emerged from my mouth brought pain. But I kept on talking. When I ate, I chewed only on the left side, which helped me enjoy more and wince less. Miraculously, as I got into bed at night to go to sleep, the pain ceased. I didn’t know why, but I was enormously grateful. When I awoke in the morning, I would still be painless, and hope would rise in my thoughts. But within five or sometimes ten minutes, the symptoms invariably returned. I sighed and took my medication. It was like that for weeks and weeks.

At summer’s end, I said to myself, I would continue my TN research and see what other roads I could pursue. But as August turned into September, and Labor Day led to fall, I wasn’t sure which direction to go. 

And then, one early autumn day, I awoke as usual with no pain. And as usual, I hoped with some desperation that it would stay that way, yet also with the knowledge that the hoped for result was unlikely.  But 30 minutes later, the pain had still not returned. Then it was an hour.  And two hours. And six hours. I couldn’t believe it. And an entire day. And two days. The pain had, almost magically, disappeared. I called my dental pain specialist and he told me I should gradually reduce the medication and see what happened. He said that this was no surprise, that the pain sometimes suddenly disappeared. (He neglected to tell me something else.)

So I slowly cut down on the pills. And still I had no pain. I stopped the medication. And the TN was gone. 

Many TN sufferers will also tell you that this is what happens. And, unlike the dental pain doctor, they will also tell you that one day, suddenly and without warning, the pain will return. Fully. As if it had never left. 

It was about 16 months later. My wife and I had just spent a long weekend in Washington, D.C.  It was a trip just to get away from winter in New York City. It was cold in Washington too, but it was a change, and we loved its museums. We were checking out of our hotel and getting ready to head off to Union Station and the train back home. I had sat down in the hotel’s computer room for guests to check my email when I suddenly felt a vast eruption of pain — on the lower right side of my mouth, just where it had been before. I couldn’t believe it. I thought my Trigeminal Neuralgia was gone forever. But it wasn’t. 

The train ride back was a horror. There were delays, I was in constant pain, and each of the hundreds, thousands, of bumps the train made on the tracks exacerbated the electric shocks. 

Finally, we got home. I still had some of the medication. I took a Trileptal pill. It helped. A little. It didn’t seem to be helping as much as it had before, but I nonetheless got a prescription renewal. 

So I did some research and found two physicians — let’s call them Dr. Tweedledum and Dr. Tweedledee — who worked together and were said to be experts at treating TN. I made an appointment. 

As I sat in the waiting room, Dr. Tweedledum emerged from his office in his white coat, walked to an assistant’s desk and started yelling — I do mean yelling — berating her loudly and lengthily. I think it was for putting a patient’s file in a place other than where he had indicated, but I couldn’t fully decipher what he was saying. He got louder and louder, until finally the assistant walked away as he shouted after her and as I and the other patients looked on in horror. Not an auspicious beginning. I was glad I was seeing Dr. Tweedledee. Or so I thought.

In his exam room, Dr. Tweedledee seemed calm, thoughtful and caring, the opposite of his partner. After a checkup and a description of my symptoms, though, he declared that he didn’t think I had TN after all. He wanted to do a test the next week to confirm his theory. The catch was that in order for him to perform the test, I would have to stop taking the  anti-epileptic médication for four or five days so the pain would return full force. He escorted me to the desk to make an appointment. The berated assistant had not returned — someone else was sitting there. My return visit was scheduled.

The next morning, I called and canceled. And didn’t return. It made no sense to me that I didn’t have TN — and I was right — and there was no way I was going to stop the medication, however limited the help it gave me. Better was at least better, if not better enough. 

Meanwhile, my family physician recommended a neurologist at the hospital with which he was affiliated. One of the best, my doctor said. So I made an appointment and had a consultation. He gave me a general neurological exam. Then he told me that he knew very little about TN, and that he didn’t know another neurologist who did. He was sorry but he couldn’t really help me. Back then, more than a decade ago, it was less than surprising that many neurologists had no, or just the barest, knowledge of TN. It was a little-known disease, and still is. Except to those who suffer from it, and their friends and families. 

And except to those working hard to cure it. But more about that later. 

That night I remembered that my first dental pain specialist had mentioned a colleague, another dental pain specialist, who had won awards for his treatment of TN. I contacted the first specialist and got his colleague’s name and phone number and called to make an appointment. There were plaques on his office walls attesting to his honors. He suggested I try a different anti-epileptic — Tegretol or Neurontin, I can’t remember which — to see if it worked better. I was willing to try anything. 

So I tried. From the start, it didn’t work as well as the Trileptal. It reduced the pain slightly less, and the side effects, especially the headaches, were worse. Four days later, on a Friday, I called my new dental pain specialist’s office and described what was happening. Give it a little more time, he said. He was convinced it would work better for me. 

On Saturday, no change. On Sunday, no change. Monday. No change. Tuesday, sitting at my desk at work, I felt as if my head might explode. There was no doubt in my mind anymore. The Trileptal had been better, and this new medication’s side effects were increasingly debilitating. So I called the new specialist again and told him what had happened. 

And he began shouting at me over the phone. Be patient! he yelled. I told you that you need to be patient! I was being uncooperative, he said. I had to listen to him, I had to trust him, he knew what he was doing. I hung up the phone. So much for him, I thought. Time yet again to seek someone else. 

And then, the next morning, something amazing happened. He called back — and apologized. And then he said, and I remember the words exactly, “If you still want to have anything to do with me, I can recommend a neurologist who knows about TN and might be able to help.”

And he sent me to Dr. Jeffrey Cohen in Manhattan, who was a godsend. Dr. Cohen said I should go back on Trileptal, at a higher dosage, There might be more side effects than before because of the higher dosage, he said. But there weren’t. There were actually fewer, because my body had apparently accommodated itself to that medication. And the pain was reduced a little more than before — but still not enough.  So after a while, Dr. Cohen told me about Dr. Jeffrey Brown, a neurosurgeon on Long Island who specialized in TN. I hesitated. Surgery was not something I was eager for. 

But eventually I decided to see Dr. Brown, who discussed with me the possible surgical procedures available — and their admittedly less than perfect chances of longterm success. But I was told they did work, sometimes temporarily but also sometimes permanently, for many sufferers. Yet there was also the risk of nerve and facial injury and numbness. 

He mentioned a one-time dose of radiation therapy, which would damage the nerve, make it less sensitive and thereby reduce the pain. He didn’t specifically recommend it — it was my choice, he said — but it seemed to me as if it might have better odds. I also wanted if at all possible to avoid surgery, whether minimally invasive or invasive. I opted for the radiation — what is called a stereotactic radiation treatment.  

It was done using the then relatively new completely noninvasive CyberKnife radiation technology, and there were no noticeable side effects.  

But the day after the treatment, my pain multiplied — it was worse than it had been in a long while. Saddened, worried, desperate, I called Dr. Brown. He told me that this was usual and I shouldn’t worry — that it would get better soon. (Why hadn’t anyone told me this before?)

Well, he was right. Gradually, over the next three or four weeks, the pain lessened, and, in combination with the Trileptal, eventually mostly disappeared. So the radiation helped me. (Whether it would help others is not for me to say.)

I am a very lucky person. I always knock wood and then knock wood again when I say this, but the Trigeminal Neuralgia, though in no way cured, is most of the time under control. I still have occasional painful episodes, some more painful than others, and I still take a smaller dose of the medication daily. But the episodes so far have been relatively rare and usually brief, and if I increase the medication slightly it helps. I can function normally. 

Knock wood. 

This is one person’s story of his experiences with Trigeminal Neuralgia. Everyone, every case, is different. Even the pain can be different — except that it is almost always excruciating. So what I’ve written is not meant in any way to apply to anyone else. And it is not meant in any way to be a primer or a guide, or  a representation of all the facts about Trigeminal Neuralgia. It’s just a tale of my adventures, my thoughts, my understanding (or possible misunderstanding or misconception) of the facts, at the time. 

So what’s the moral? Is there a moral? Why am I writing this? Because many people are not so lucky, or not lucky at all. They are suffering, every day, every night. Often in severe pain, sometimes I’m sure more severe than mine was. And some do commit suicide. Several years ago, a former Times colleague with a similar condition, occipital neuralgia, killed herself at age 49 because of her debilitating illness.  It is a situation that must change. 

We need to find a cure. We need more effective treatments. The Facial Pain Research Foundation is working every day to find a cure, with top research scientists in several cities and at major universities devoting their days and nights to finding a way to end the suffering. And because everyone at the Foundation is a volunteer, nearly 98 percent of money donated goes directly to those scientists to help fund their research. 

You can help too. Please be generous.  

   

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