TRANSCRIPT:

Voice-over: Welcome to Spotlight on Migraine hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you, in part, by our generous sponsors, Praxis and Teva. 

In this episode, we hear the perspectives of a physician and two patients about trigeminal neuralgia. First, Dr. Jeffrey Brown describes how it is diagnosed and treated. Then we hear from patients, Anne and Ally, about their individual experiences living with this rare and neuropathic facial pain condition.

Jeffrey Brown, MD: Hello, this brief lecture will introduce you to the concept of this entity known as trigeminal neuralgia. It’s an introductory lecture. Those of you already familiar with it, I hope will learn a few new things. Those of you not yet familiar with it will need to do a little post-lecture study to really comprehend this brief discussion. What I hope to do is describe the causes, the definition, and a little bit about the treatment of this disease. 

So what is trigeminal neuralgia? It’s one-sided. It’s pain. It’s characterized by brief electric shock-like pains. These are different from the aching pains of a toothache. It’s as if you hit your funny bone in your face. The onset is abrupt, and it terminates rapidly. The pain is limited to the distribution of one or more of the divisions of the trigeminal nerve. What’s that? That’s the nerve that provides you sensation to your face. It has three branches: one goes to your forehead and your upper eye, one goes to your cheek, one goes to your jaw. 

There’s something called classical trigeminal neuralgia, which is a bit of a misnomer because it’s based on an understanding from physicians 300 years ago, But it’s caused, most often, by compression of the trigeminal nerve at the level of the brainstem by an artery or a vein that’s pounding against the nerve. There can be a mixture of these intermittent shocks and a persistent, aching pain. And there can be trigeminal neuralgia, which is caused most often by multiple sclerosis, which causes injury to the pathways of the trigeminal nerve. 

So how do you get the trigeminal neuralgia? Well, these arteries or veins are quite normal; they just happen to wind up against the nerve. And they pound against it day after day, maybe year after year, enough to injure the insulation of thousands of the wires that compose the cable that makes up the nerve, which leads to short circuits. So when electricity goes to the nerve – when you talk, when you chew, when you touch your face – there’s a short circuit. That’s the electric shock. There’s more complex elements to it, and you can read about it in this slide, but that’s the basis of it. It’s a normal artery and a normal vein, one or both of which end up leading to injury to the nerve. 

What are the symptoms of trigeminal neuralgia? Well, a doctor makes this diagnosis primarily by talking to you the patient or by listening to the words that you use to describe the pain. There are many different words, and this list has been found to be quite helpful. 

In the classical description, one can use words like jumping, flashing, or shooting, pricking, boring, drilling, stabbing, lancinating, sharp, cutting, or lacerating; these are all electrical descriptions. 

When the pain becomes more constant, which it can, instead of intermittent, one begins to use words like hot, burning, scalding, searing, and this can be constantly present in the face, in between the shocks and the stabs or the drills. It can be tingling, itching, smarting, or stinging. 

Then in between, perhaps after a long-term presence of these symptoms, one gets what are called nociceptive pain descriptives that are used. These are not nerve pains but somehow are intermixed. Those are the words like dull, sore, hurting, and aching, and heavy. That can be confusing. But the primary descriptives need to have this nerve element to it to make it into trigeminal neuralgia. 

Okay, so we talked about arteries or veins pounding against the nerve. How do we know that they’re there? One has to get what’s called an MRI, a magnetic resonance image. But not all MRIs are equal. The MRI has to be done with specialized technique, which have acronyms like FIESTA or CISS, and those allow one to see brainstem, nerve, spinal fluid, arteries, and veins all in the same picture. 

So this is what such a typical MRI would look like. It’s complicated. But over here is a trigeminal nerve going into the brainstem, and there’s a loop of an artery, right there, distorting the nerve. This is one view from below. And here’s a view looking straight on. That’s the brainstem. This is the nerve. There’s that artery right up against the trigeminal nerve. 

Maybe it’s easiest to see in this picture. The face is over here. This is the brainstem. The white is spinal fluid. This is the trigeminal nerve going into the brainstem. And there’s the villain. There’s that artery right on top of the nerve. It’s a normal artery. It’s been banging against that nerve for, who knows, a whole lifetime, but now the person is symptomatic. 

What if you have this, and you don’t have the pain? Will you get trigeminal neuralgia? Nobody knows. It’s only if you have the pain that one needs to get such a study. 

Once the diagnosis is made, what’s the first thing you need to do? We use drugs which are seizure drugs; they’re called anticonvulsant drugs. And why do we use those drugs instead of pain medicine because this is a pain? Because this is a pain caused by overactivity of a nerve, and seizure drugs slow down the electrical conduction of the brain and all the nerves in the spinal cord. 

Now there’s only one drug which is approved by the FDA for use in trigeminal neuralgia. It’s called Tegretol or, in a longer generic word, carbamazepine. There are some other drugs, and they’re listed here. And one starts with the two most basic ones, carbamazepine or gabapentin. And usually it’s a neurologist who begins this treatment because they’re the ones most knowledgeable about these medicines. 

Now, the next step comes when the medicines no longer help. Because this tends to be a progressive problem, the doses tend to increase with time. These aren’t like antibiotics. They don’t cure you; they just inhibit the symptoms. But if the symptoms overwhelm the drugs, the next step to talk about is surgery. 

The surgery is done by neurosurgeons. This is a neurosurgical problem, not a pain management problem, really, to treat it. It must be treated by a neurosurgeon. And the most common way to treat it surgically is with a brain operation that’s done with a microscope designed to move that artery or vein off of the trigeminal nerve and put a little pillow between the vessel and the nerve in order to stop the pounding, which, 90% of the time if the diagnosis is correct, will stop the pain. 

All of these operations are effective, but they have different rates of success, depending upon the nature of the pain. They’re most successful if there’s intermittent stabbing pain; slightly less successful if the pain has progressed to include a constant level of pain. This is a treatable disease. 

All of these operations are effective, but they have different rates of success depending upon the nature of the pain. They’re most successful if there’s intermittent stabbing pain; slightly less successful if the pain has progressed to include a constant level of pain, the burning, searing element, or even the dull, aching element on top, but they’re still effective. This is a treatable disease. 

Why choose one operation over another? The MVD or microvascular decompression, in which the pillow is put between the artery and the nerve, has the longest lasting success rate. If 100 people have the surgery, 90 of them will be pain free right away. And after 15 years, if you look at those 90 patients, 75 of those patients will still be pain free. If one has some of those outpatient procedures with needles or radiation, 90 of the 100 will be pain free at varying intervals after the surgery, but maybe only 45 of them will be pain free in 3 to 5 years, and then you have to do something again, and the decision has to be made what that is. But it’s still an okay way to treat it, understanding that the likelihood the pain will come back is higher with those, what are called “ablative” or procedures that injure the nerve. 

So again, this is an introduction. It’s brief. I don’t expect those of you not familiar with trigeminal neuralgia to get full comprehension, but you can get more help. The Facial Pain Association, for which I direct the Medical Advisory Board, is available at the website that you see on the screen. And you can get a guidebook that we’ve put together if you want to read more, called, Facial Pain, a 21st Century Guide book. 

I hope this has been helpful. And I very much hope that if you have this kind of pain, you can find a way to get rid of it and get on with your life. Thank you very much.

Ally Kubik: Hi, everyone. My name is Ally Kubik, and I am a Director for the Facial Pain Association. I’m so happy to be here and give you my story and hopefully give you some hope. As I said, I’m a Director for the Facial Pain Association. I have been involved with them for many, many years, and they’ve been a great support to me. 

Something my doctor told me many years ago was you are not your pain. So that’s what I want you to remember as we go through this journey. Whether you are at the beginning of this journey or you’re at the end, you are not your pain, you are separate. And at times, your pain can completely consume you, but it’s important to remember yourself as you, not your pain. 

So my journey to a diagnosis started when I was 13 years old. I woke up at 3:30 in the morning with horrible, horrible, horrible pain in my one ear. I went to the doctor the next day and had an ear infection, sinus infection. I thought, wow, this is just a really bad ear infection. Okay. Got antibiotics. Fast forward 4 days later, the pain was getting so much worse. My mom took me back to the doctor, and they’re like, oh no, the ear infection is gone. And I, at that point, thought I was crazy. And my mom, being a nurse, was like no, something else is wrong here. 

So I was eventually admitted to the hospital, and 10 days later, which is very abnormal for a facial pain patient, I was diagnosed with trigeminal neuralgia. The pediatric neurologist told my parents either your daughter is reading a medical textbook, or she has trigeminal neuralgia. My diagnosis later on became trigeminal geniculate glossopharyngeal neuralgia bilaterally. So that will make more sense later when I tell you how many surgeries I’ve had. 

So these four words that have forever changed my life is, “You have trigeminal neuralgia.” And there’s no easy way around it, but don’t give up hope. And you are here, and so you are going to gain some more information and gain some more knowledge. 

Pain management. So my pain management plan, over the past almost 20 years, has certainly evolved, as yours will. It may be daily, weekly, monthly, whatever it may be. When I was first diagnosed, I went the typical pan antiseizure medication treatment route. It worked for a little bit. I had some nerve blocks. I did not want surgery at that point. I was 13 years old, and I was terrified, terrified. I did complementary and alternative treatments like acupuncture and upper cervical chiropractic. I think those are tools, as I always say, from your toolbox. 

I had infusions. There was a point where I was getting lidocaine infusions just to manage, keep my pain at a manageable level. I was getting them monthly. Those worked great. Definitely something from your toolbox. 

I eventually did have a microvascular decompression when I was 14. In total, I’ve had four microvascular decompressions. And the reason I have had four is because I have it bilaterally. I’ve had it once on the right, and I’ve had three on the left…three microvascular decompressions on the left. You may say why did it fail; you’ve had them three times. No, didn’t fail. Every single time, the pain got better after the microvascular decompression, and then it would come back. And every single time when they went in, they found another vein. Just like varicose veins regrow, the veins on the nerve can regrow too. So, lucky me. 

Something I think that’s really important to keep in mind is your pain management plan is going to change, and you have to roll with it, you have to be flexible. Advocate for yourself, but just know it’s going to change, you’re not just going to get this one prescription and be set. It might work; it might not work. 

Something else that’s really important is to have a rescue treatment plan. For me, if my pain gets really bad, I might have to go to the emergency room. I have a very specific regimen of medication that I need. I carry that treatment plan with me. My mom and my husband, the two people that would be bringing me to the emergency room, both know the treatment plan. I also carry a letter from the director of the emergency room of the hospital I go to stating that this is, in fact, my diagnosis because many people haven’t heard of trigeminal neuralgia and aren’t familiar with it and might say oh, it’s a headache or it’s something else. 

I also right now, I have my treatment plan is a low dose of Lyrica and it wasn’t…I didn’t start on that. I was on a cocktail of medications. But over the years and surgeries, I’ve been able to go down, and I’ve also learned to manage my triggers, manage my expectations. Because I know that stress is a trigger for me, and I need to manage my stress, then I can keep my pain under better control. I remember midterms and finals in college, pain always got worse. Why? Because it’s the end of the semester, it’s the middle of the semester, and it’s stressful. And there’s no way you’re going to get rid of stress in life but just figuring out how you can kind of manage that. And maybe it means hey, you’re going to skip going out or you’re going to skip doing whatever so that you can take a breather. Maybe it just means you need to give yourself a routine or a schedule, something. Learn to manage your lifestyle. 

Living and working with facial pain. I think this is so, so tricky because it’s invisible. People don’t see it. People don’t hear about it all the time. They say trigeminal what? I mean, if I meet someone who has it, they’re like…I’m like, oh my gosh, you know what I’m talking about? Like, wow, this is really exciting. Not that I want people to have facial pain, but it’s exciting when you meet someone who gets you. 

So my journey, I went through middle school, I went through high school, college, grad school, marriage, first job, grad school again, and starting a family all with facial pain. And I’m here to tell you, you can do it. It is not going to be easy, and it’s not always going to be fun. But please, if your goal is to go to grad school, if your goal is to get married, if your goal is to have three kids, don’t give up. Don’t give up. Do not let this diagnosis stop you from living your life. Remember what I said, you are not your pain. So live your life despite your pain as best as you can. 

Facial pain can sometimes seem like a full-time job because you are chasing after doctors, chasing after insurance companies, all of those things, but don’t give up. 

Learn to advocate for yourself and what you want and what you need. Whether it’s advocating with your friends. Hey, you know what? I can’t do going out for drinks at 9 o’clock because, you know what, I just need to go to bed early. So hey, you guys can either go or, guess what, I’m going skip this. I’ll do next time. Maybe we can meet earlier or something like that. 

And work-life balance. You don’t want to be a slave and burn yourself out so that you have nothing left. That’s just general life but with facial pain even more. This is my favorite quote. The best view comes after the hardest climb. Because let me tell you, I look back, and some of those days were really, really hard. And I think, how did I do it? But I’m here. I did it. And you can do it, and you will do it.

To help you get through this difficult time, find your people, find your community. The Facial Pain Association is a great resource for people with facial pain. That’s how I found my surgeon. That’s how I feel like I’ve gotten my life back. Social media is a great resource. There are so many different Facebook groups, different people on Instagram to follow. There are different support groups. The Facial Pain Association offers virtual support groups. They have in-person support groups. So find people who get you, if you want to find your people that are going to walk along this journey with you. 

One of my very, very dearest, closest friends is a TN patient. I would have never met her if we both didn’t get this diagnosis. I can text her, I can call her anytime, and she gets it. So you want to find your people. If you’re a Grey’s Anatomy fan, you know what I’m talking about. 

This is the Facial Pain Association’s website, which has a ton of resources for you, for physicians. Great place, and there’s lots of different stories of hope. So please do not give up. 

Thank you so much. I’m happy to have been able to share my story and thank you.

Anne Ciemnecki: Greetings. My name is Anne Ciemnecki, and I’m a patient with trigeminal neuralgia. I want to thank you for inviting me here today to share my journey with you. 

I am the third woman in my family to have trigeminal neuralgia. My grandmother had it. My mother had it. And now I have it. You can see in this picture is my grandmother at age 51 and my mother at age 24. That adorable baby in the picture? That’s me. Now you would think with my family history, that when I started having pain on my face and in my mouth, someone would be jumping right up and down and saying, you have trigeminal neuralgia, too. But that was not what happened. 

It took me 11 years for a doctor to make the connection between my facial pain and the same trigeminal neuralgia that my mother and my grandmother have. Why was this the case? Well, back in those bad old days, nobody thought that there was a genetic component to trigeminal neuralgia. 

The other thing is that my pain was constant. My mother and my grandmother had the classic shooting pain, the electrical pain that you never forget. I had a constant dull ache all over the right side of my face and mouth. So they didn’t make the connection. 

And third reason I think it was hard for me to get a proper diagnosis is that I was a menopausal woman. And back in those days, we were pretty much invisible or ignored. I had one doctor tell me that I needed my pain, and I should just move on to my next medical crisis, and another doctor call my husband and tell him I was suicidal. So my husband’s wonderful. He says oh, did she talk about guns? And the doctor said yes. And my husband said, I think that gun was for you, not for her. And that is what support looks like. 

This next slide, as you see, shows all of the things I’ve done over the past 30 years with my pain. And you can see there were 2 MVDs, a Gamma Knife when the occipital branch of the nerve acted up, acupuncture, marijuana, upper cervical chiropractic. Everything helped a little bit. And at the bottom, you can see all the medications I’ve taken, and there are a lot of them. And I took them alone, and in combination. You name it, I’ve done it. 

And everything works for a little while. And the effect is cumulative. So over time, I have gotten better and better and better. But this is hard to express. As a support group leader and a peer mentor, people come to me and they say, what worked for you? Can I try it? You take marijuana; I’ll try marijuana. You do this; I’ll do this. You had a Gamma Knife; I’ll do a Gamma Knife. But that’s not the key to feeling better. Because everybody’s different. You can’t come to me and ask me what to do. I can tell you what I’ve done, but it won’t really give you direction. However, I do have a few good tips and tricks that will help you, and I try and convey these to people who ask for my help. 

The first thing to remember, on the slide number one, is that trigeminal neuropathic pain is a chronic condition. It’s not going anywhere. You’re going to have it for a while. I had 5 full years of remission, and it came back. And you might have something like that, too. 

You cannot chase the next best thing that’s on the internet or that somebody else has done. You have to use sustainable, evidence-based treatments. You have to treat it like a chronic condition. And once I started doing that, my life got a lot better. 

Number two, you need to work with an expert who can guide your care. This is a rare condition. The average doctor who practices for 30 years sees 2 or 3 cases of trigeminal neuralgia. That’s not a lot. They’re not keeping up with the latest things, and they don’t know how to treat it. Go to an expert. 

The best doctors, in my mind, who see it all the time are the orofacial pain dentists. That’s what they do. They treat heads, and face, and neck pain. They’re wonderful. If you need a neurosurgeon, please go to a neurosurgeon who does several of these a month. You can’t go to someone who has only done a couple, even if it’s convenient, even if it’s in your insurance plan. You have to find a good doctor. And if it takes travel to get to someone who’s an expert, do the travel. You travel for occasion. You travel to see family. This is travel for yourself. Find that expert. 

Now once you get to that expert, together you’ll pick a treatment that is evidence-based. Evidence-based medicine has three components, and those components are: the research, the doctor’s expertise, and your comfort level. So everybody has a part. Now once you start these evidence-based treatments, some of them might be medication. And I would say 99.9999% of the medications you’ll be taking need to be taken on a regular basis, every single day, as prescribed. If you take them as needed, they won’t help you. So take your meds all the time. If you’re uncomfortable, talk to your doctor about changing it, maybe increasing the dose, lowering the dose, switching to another similar medication, but you need to keep a steady dose in your system for those medications to be effective against the pain. 

Now, the other trick to not having constant flare-ups is to know your triggers – because we all have things that trigger our pain – and avoid them. Sounds very logical, but it’s sometimes really hard to do. So one of my triggers is wind. So when I go out, if I think there’s a wind blowing, I think there’s going to be a breeze on my face, I wear a scarf. It’s pretty easy. In the summertime, I’ll wear a light scarf. I love when everybody’s wearing masks, because that works for me too, and I don’t feel so alone. We’re all doing it. My other trigger is cold drinks. So if I have something to drink in a restaurant, I always order it without ice. 

Now there’s one exception to avoiding triggers, and that is dental care. The last thing someone with trigeminal neuralgia wants is major dental work. So if you go every six months for your prophylactic exams and cleanings and x-rays every two or three years, keep your teeth and mouth in good shape so you don’t face anything major happening. It’s worth it. If you are triggered by the dental work, the dentist can give you a lidocaine or Marcaine injection before and even after, so you don’t get the pain afterwards. But do keep up with the care. 

You have to have a plan B. Because if you find yourself in pain, that’s the worst time to make a decision about medical care and what you’re going to do next. Think about it ahead of time, when you’re feeling good. I, for example, have what I call my rescue medications, the medications that I take only when I’m having a flare, to supplement my regular meds. So I know if something’s wrong, I will go to those medications. I also know that my plan B is to sometimes just stop what I’m doing and lay down and take a rest. Another big component of my plan B is I know what I’m going to do if I ever get to the point where I think I’m going to need another procedure. And for that reason, I have 

Dr. Brown on speed dial. So if I need a neurosurgeon again, I know who I’m going to go to. He knows me. And we will work together to decide what to do next. But it’s important to have this planned out, so you’re not making decisions when you’re in pain. It’s the worst time to make a decision. 

Next, come out of the pain closet. Hiding your pain is impossible. People know it’s there. When I was at work, people used to think I was really hard and grumpy and difficult to work with. But I wasn’t. I was just in pain. And once I told people that, they understood, and that made working a lot easier. You’ll also find people who support you when you come out of that closet. So don’t hide your pain. You can’t do it, and you may as well not try. You’ll feel better when you fess up to it and people around you are helpful. So I always say there’s no shame in pain. 

Okay. Lastly, surround yourself with supporters – family, friends, coworkers – people who believe you. Do not continue in toxic relationships. If someone thinks you’re making up the pain or doesn’t respect the pain that you have, you don’t need them in your life. Find someone who will help you. 

Okay, and my last trick is to live outside your pain. Find something that you are absolutely passionate about and do it. I am never in pain when I’m with my grandchildren. I could have a flare in the morning and be babysitting in the afternoon, and I feel much better. So I suggest that you find something to do that distracts you from your pain and that you’re passionate about so you can live a life outside your pain. 

The symposium directors asked me to talk about where I get my support. On the left, you’ll see my family. You see my husband, John, sitting next to me, along with my two sons, Brian and David, and their wives, Kristen and Ashley. You see the three beautiful grandchildren. You also see my best friend Karen, who’s like family to me. She’s always there. And she’s been a steadfast supporter from day one. 

So my other source of support is the Facial Pain Association. They have a wonderful new website that has so much information on it. So you can be educated there, you can get support, they do advocacy. Anything you need, you’ll find on that website. So visit that website. It’s www.facepain.org. 

That is all I have to say today. You can reach me at aciemnecki@gmail.com. I’ll be glad to talk to you and answer any questions you have. 

Thank you for inviting me here today. It has been my pleasure to talk to you, and I hope everyone does well and has a life that’s with as little pain as we can possibly imagine. 

Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.