Beth Markesino has found ways to take control back from her TN. Ways that may work for others. And she is very open, ready to share, raising awareness every chance she gets.
Like most TN warriors (preferred to sufferers) Beth’s first attack came suddenly and literally knocked her off her feet. She was watching a show called “Trading Places” waiting for her pharmacist husband, Adam, to get home from work. They had plans to go to a friend’s house to watch the Michigan vs. Michigan State game. She got up from the couch and was “attacked” with an electric shock, a lightening like strike to her face. She’d never experienced anything like it before. It put her back on the couch. She thought it would go away. It didn’t. She called Adam who suggested Tylenol or Aleve … and take a shower. That was the worst thing ever! “It made the pain amplify. I couldn’t finish my shower.” It made the attack she was already suffering even worse!! Next was the blow dryer. (You get to know the things that you just don’t do! At that point it seemed everything she did was the wrong thing.)
That was in 2005 and in those days Beth rode a motorcycle for joy, a 2002 Buell Blast, painted pink! She loved the fall days in Michigan. It was her favorite time of year – the leaves and the cool wind on her face. But when husband opened the window of the car on their way to the game that day, well, as she put it “I’ll never forget that wind.” Needless to say she didn’t enjoy the game either. This initial attack lasted for a couple of days!
Life suddenly changed. They went to the ER where she had an MRI, a cat scan (TN doesn’t show up on these tests), got strong narcotics and an appointment with a neurologist. When he started scraping her face he set off another attack. Then he was pricking her face, all the while she kept asking him to stop. He finally diagnosed it as Trigeminal Neuralgia and she said “Tri what?” He told her he’d only seen it in older folks, never anyone as young as her 26 years. He also said it was seasonal and it’ll get better once it gets warmer. He was very short with her and she didn’t see him for very long.
Since he sent her home with the anti-epileptic drug limintol and no brochures or information, Beth got on the internet immediately to discover this thing attacking her is called “the Suicide Disease.” This was such a devastating first read about her new disease she really wants that removed!! She would never want someone to think for one moment that there isn’t support out there or that suicide is the only means of relief. It put her through a lot of changes as she thought of how much she had to feel grateful for. How lucky she was to have such a great husband (they’d only been married for 6 months at the time!) And “Is this what my life is going to be now? Why God? Why? Why me? What is the purpose?” It was hard.
They moved to another city in Michigan and she found a new neurologist. By then her pain had gotten a lot worse, came on stronger and lasted a lot longer. She was bare able to work. The attacks were so bad at that time that they would make her vomit. She’d put a blanket or a towel over her head and had to lean over so that the tear drops would fall straight to the floor and not touch her face. By then she knew that trigger also. “It was literally a living hell for me.” The pain was coming from all three branches on her left side and they could go off individually or one could go off and then another. The second wasn’t usually as bad. She never knew which one would last the longest. She could have an attack on the root of her eyelashes, on the top of her lip, her nose, her head, her cheek.
It is hard to be around people who don’t know what TN is. They want to help in inappropriate ways. Right now, without a cure, she is paying more attention to her attacks. She is noting the “who, what, where and when of it … how long did it last. I know that when I let my emotions take over the pain will last longer.” Now she pinpoints what triggers attacks. Sometimes you can avoid the triggers. Sometimes you can’t. It’s all about finding a balance between the triggers and having a life. Her slogan that gets her through is “This pain started and it will end. There is a beginning and an ending.”
Two years after that initial attack, in 2007, Beth underwent micro vascular decompression surgery. Before the operation she was in almost constant pain as just about anything would trigger an attack. She wasn’t living. She was so sensitive that just laying in bed and not moving wouldn’t even keep it from happening. She was very hopeful that this would be the answer. That this would save her life! She also knew that as with any surgery, you take your chances, you gamble, because success was worth it. And it was a success! For about six months. Then it started to slowly come back. They had unwrapped two arteries and a blood vessel from her nerve and said the myelin sheath damage was very deep. Thankfully it was not as intense when it came back. At least she didn’t have to puke! “But it’s still bad. It’s still really bad. I still take medication and I still get down on my knees and cry.”
And now she is bilateral. That is when both sides are affected. For her it is all six branches involved … all of them! She started first feeling little bits of movement, tiny twitches, and flutters in the right side. She didn’t know what it was at first. It morphed into all three branches so that now she can have an attack on both sides of her face in any combination! She says she just doesn’t know what she will do if we don’t find a cure.
This past April of 2015, Beth had gamma knife radiation done on both sides of her face. Again she knew there was a risk factor. But this time something did go wrong and she ended up being worse off. She now has numbness along with the pain. She says she just has to deal with it. She would like to tell people to wait for a cure, but she understands their wanting to try anything!
She has also been having multiple nerve blocks done and they last about a month or so. This is where they stick a BIG needle into the nerve. She was awake for this and explained that the monitor they place on your face that allows them to see the trigeminal nerve can trigger an attack. They try to put the needle right into the nerve and then they move it around. It is painful. “We go through a lot of painful procedures just because we want relief!” She uses a compound of Ketamine and Lidocaine when her face is really hurting and to protect her face from the wind, cold and heat when she runs.
You read that right. Marathons no less! Beth finds that running gives her so much relief! She highly suggests it as the endorphins help to cut the pain. Plus runners have so many things they have to face and get over … this is just one more.
She had a rough start in life. Born a preemie with an identical sister who is perfectly healthy and who did not have to go into an incubator, Beth was discovered to have a heart problem when she reached her teens. She had a heart that would beat so fast “it was faster than a rabbit’s heartbeat.” (That’s fast!!) She wasn’t able to do any physical activity. And she always wanted to run!
They told her once she was older it would go away. At age 22 she lost her vision for a few seconds and was rushed to the hospital. The heart specialist did an oblation and found she had an extra passage in her heart. Once that was taken care of she could live and do things she couldn’t do before. She slowly started getting active as she had a fear her heart would start up again. She enjoyed what most of us take for granted for all of four years.
Then four years ago she had to go off her TN medications because she and her husband wanted to have a child. She went into slight remission due to the hormones and then breastfeeding. (If it weren’t so hard on her she’d just stay pregnant, she joked.) It left her with a few pounds to take off. She started with a 5K run, which she trained for by walking in the neighborhood and using a treadmill her husband bought her, which she would use it for 3 miles every night. She got a fire by doing it. I jokingly said “it was the endorphins!” and she replied “Yes! That’s exactly what happens! Endorphins take away pain.” This is what she wants everybody to know. When you’re racing or you’re around other people who are running or exercising, it makes you happy. “That’s why I love to run. I’m not thinking about TN. I’m not thinking about the next attack. I don’t want people to think that because I run I don’t have TN. I do!! I have lots of attacks. Just because someone sees me on FB and sees me smiling or having fun doesn’t mean I don’t have attacks. I have plenty. The reason I run as much as I do is because running has brought me so much joy and it has stopped so many attacks. It has brought so many friends my way too. And these friends aren’t just people that don’t understand TN. They do! They support me when I have struggling miles when I’m running. … They hear me. They support me. They think of me as inspiration for them. Which is crazy cause I don’t think of myself as inspiring at all! Not one bit! I think of myself as someone who has TN that is trying to find relief.” (I have to disagree. I find her totally inspiring. I now have to start walking myself!)
Attacks while running are mild and go away quickly says Beth. It’s easy to not give it authority when surrounded by people. When racing all alone and an attack comes it takes over. Then she feels no support. “The more you think about them and give them energy the worse they are. The more you stress about it the worse it is.” She wants everyone to run, knowing it isn’t for everyone. But it is a great distraction.
“There’s a beginning and there’s an end. Let’s get to the end now!” (She takes control.) She likes herself as a runner so much more than the girl who was emotionally overcome by the attacks. (She talks her to Trigeminal, as she calls it, like it’s a person.)
“We just have to find those people, that group, that support us.” When she found her running group she discovered they all had things they had been through and they are able to all connect and empathize with each other due to the commonality. They don’t have TN but they can relate to pain as they have their challenges also.
Her latest run in Disney World in Fl., she ran almost the whole race with another woman with TN, Catharine Oliver. Catharine was only 4 months into it so Beth was able to give her a lot of good information to help her. She was already a runner and one of her doctors said maybe she should stop running, which she promptly ignored. Beth encouraged her to not stop! She was so grateful to have found Beth. She didn’t know there were other long distance runners with TN out there! Beth assured her there are lots of them. They are spreading awareness and generating funding, while actively engaged in fitness (she mentioned Amanda Young as an example).
The continual use of the antiepileptic drugs causes osteoporosis and Beth was recently warned by her doctor she has the beginning stages. He told her she had to keep fit, to watch her diet. Caffeine, sugar, nicotine, too much alcohol and things like that can cause an attack. “There are lots of things in our control that we do … how active do you want to be in taking care of your pain?” Some people just want to take a pill and wait for a cure. Not her! “We can’t just sit and wait! I have to work towards this. If I want to get better I have to be better!” For her this means running and trying to raise awareness everywhere she goes.
The amazing thing to me is that after only three years of beginning to run, (in her entire life!) she has run four marathons, 8 half marathons and “a gazillion 5K’s” … so many she has no idea how many. The 16-week training schedule for a marathon is grueling. The first month she has to run 100 miles. The second month, 150. She has to buy new sneakers every month! (She tries to get them in teal; in fact all her running gear is in teal for TN. Just another way to raise awareness.)
Beth is now going for the “big leagues” in running. She will be doing two marathons back to back, meaning two weekends in a row, to be considered a “Marathon Maniac”. The first is a fundraiser for FPRF in Asheville, NC on March 13th and the second, the next weekend, is in Wilmington, NC where she now resides. (To qualify you can also do 3 marathons in 90 days.) She is presently part of the “Half Fanatics” group. They run a lot of half marathons. She wants to be a double agent by being in both groups. Being a member of these groups and having TN is a major accomplishment, not to over looked. Everyone knows she has it. She is not quiet about it. In the run in Detroit this past October she was able to raise quite a bit of money for the TN Association. She had a t-shirt made for herself that said “TN Warrior” on the front and her slogan she lives by on the back “A TN warrior never gives up, never gives in. We fight every day till we find a cure.” She has had multiple articles written about her. She was in Runner’s World magazine for that race.
It was chilly in Detroit, her hometown, the day of the race in October. She had to throw her gloves and her jacket around mile 5. But she always leaves her hat on to protect her face. In a half marathon race two weeks previous to Detroit, it started to rain. She put a plastic bag over her face as the raindrops were hurting too much. She used the little slit on the shopping bag to breath through. One of the women at a water stop said to her “Oh honey! Do you not want to ruin your hair?” (We both had a good laugh at that one!) She, of course, took the opportunity to teach the woman about Trigeminal Neuralgia and the immense pain she was in. The woman felt sorry for her and asked if she wanted to stop running. Beth said “I’ll never stop!” The woman didn’t know who she was talking to!
She actually even races for time!! But she listens to her body. When she needs to take more water or slow down, she does. Others were dropping out of the recent Disney World marathon. She took an extra hour to complete it and more water than she knew she could handle but she was able to finish due to listening to her body. She can’t afford to hurt herself as it would take her out of running for months. That is not an option. She is now mentoring a group of runners and they ran 5 miles last Saturday. They are preparing for the half marathon where she will be running a full one. “I let them know in the first two miles of training that I have TN. It does not define me but it is a part of me and I wanted them to know. One of the girl’s mom has TN and she said ‘You must be in so much pain!’ She got it!”
She likes to tell people new to TN to ask another TNer who has had it a long time what they are doing to get through? How are they able to handle it so much better now? (Keeping in mind that everyone has it differently)
Beth is fortunate in that she has an amazing support system in her own family. 110% she says! Her 80 year-old Grandmother tells her “You might have TN but TN doesn’t have you.” Her husband, Adam, chose to do one of his rotations for his doctorate with her neurologist so he could learn more about it. He told her there were only two sentences in his medical books about TN. He wanted a better understanding of what was happening to her. She still can’t believe he did that for her! That is love! (This is where her emotions get involved. She is so grateful for him. She was letting him off the hook from the marriage at the beginning when this all started. She said “You didn’t sign up for this.” To which he said he married her for better or for worse, in sickness and in health and this was just getting it out of the way sooner rather than later.)
Since the gamma knife radiation treatment left her with Anesthesia Delarosa or numbness on top of the pain on both sides of her face, she doesn’t just have to run, she needs to run! It is physical therapy for her. Sure she needs her rest days to recuperate and it is so much worse on those days. But on the days she runs at least 10 miles she can go the entire day, and sometimes into the next, with no pain. She is happy. Even elated! She cleans the house, does the laundry, grocery shops. She is the best mom ever. “I feel like me. I get back from a run with many fresh ideas and the most clarity ever!” Other days are hard, a struggle just to get through the day.
“I’ve found peace with my trigeminal. There are ways to find some comfort through the things you can control yourself. We get mad at doctors and other people but it is our TN. So let’s figure out how to control it in our bodies. There are things we can do until the cure comes along. I tell my story so if anything I have found that helps me will help others I need to say it. I just really want to help other people with what I find. I’ve gone through a whole cycle. The being mad, the hiding, the pills, the emotions, the pain … I’m not as angry. I’ve come to a peace with it. I have a three year-old daughter, Sunday Rose; a lot of us have kids. We want to be at soccer games and recitals. When I run and I am struggling with a mile I think of other TNers and how they are struggling and that pushes me harder and I push myself to not feel sorry for myself. I’m running for all of us TN warriors because I want to run for a purpose. I am a voice for all of us. It isn’t just for me.”
Up to 50 attacks is a typical day. She had 5 just while on the phone with me. Smaller ones that didn’t “burst” due to her being in a relaxed state. Breathing techniques like lamaz work to keep them at bay. Visualizing calm things. Meditation which she does in the morning sends her mind “someplace else”. And she regularly sends her mind to the end of an attack. She closes her eyes and focuses on the end and visualizes the end of the attack. “Just get to the end.”
“I’d like to get a lot of people to run together to bring awareness to our TN warriors, letting them know who we are. Most people have no clue. I never knew how tough I was till I had no choice. I know these guys and girls are tough enough to run marathons. They may not know it but I do.”
Advice from Beth:
– Join online groups.
– Watch your diet (eat alkaline) and exercise.
– Think good and healthy thoughts as that is a huge thing.
– Keep your doctor up to speed on how you are feeling.
– Know exactly how to get the care you want or deserve before going to an appointment. In other words, research things like medications.
– Keep a Pain Journal. Write down when you have an attack, what might have caused it. But don’t look back on your journey or you will feel sorry for yourself. It also can help your doctor. It causes you to look closely and try to fix the things you can. Medication is a downward spiral.
Beth put together a virtual race on Awareness day and she had a great turnout. She plans to do it each year. It is virtual so people can walk or run wherever they are on the same day together. She even designed a medal, she had 100 made and sent them all out. You can see it here; (http://www.racesforawareness.com/shop/virtual-races/trigeminal-neuralgia-awareness/)