Rebecca wants to know “why”. She is considered a newbie to TN, just having it for four years now. She knows the date, as most TN sufferers do. April 10, 2011. The day life changed.
Like many other ‘TNers’, as Rebecca likes to call them, her first occurrence seemed more like an infection or abscess in her tooth except that it wasn’t constant and it moved around. It seemed to happen late in the evening – until the fifth night when she panicked. She could no longer handle the pain and felt like something had to be “horribly, horribly wrong.” She went to the emergency room thinking she needed antibiotics or something.
It was localized but it would jump around on her two front teeth and up to her nose and even her cheekbone and back behind her eye (but never to the sides of her face). The young ER doctor recognized the symptoms, being freshly trained and with a good memory, he told her she had a “condition”, which relieved her since this must mean that it was something you rub some cream on or take an antibiotic for and it goes away. (Again she was horribly, horribly wrong.) She was given a prescription for Neurontin and within two days it morphed from being an electric shock type of stabbing pain to being like someone having an elbow pressing into your jawbone or cheekbone. It dulled it; made it tolerable. That it worked meant it was Trigeminal Neuralgia.
She made an appointment with an oral surgeon since he was available before her regular dentist had an opening. He took panoramic views of her teeth and declared it had nothing to do with her teeth. He came to the same conclusion as the ER doctor.
She was already under the care of a neurologist for another condition and had an appointment with him in two weeks. She told him her ER experience and that the doctor and an oral surgeon came to the same conclusion. He did an MRI to rule other things out.
Like most things that take away pain, you have to keep upping the dose as your body adjusts, so she stayed on it until the side effects made it no longer possible. She couldn’t drive, she was having difficulty speaking – the words weren’t coming out right. She forgot things you shouldn’t forget like how old your kid is or how to get to the school to pick him up. The Gabapentin made her walk to the right. So if she wanted to go through a doorway she had to start several feet to the left to get there. “That’s when you know you’ve maxed out your dosage. Even if the doctor says you can go higher and your body says no – NO! You can’t! And for everyone it is different so you really have to listen to your own body. Some people can’t tolerate the medications at all!
“We know the cycle. We know the options. We know eventually we will run out of medications to use.” I quickly jumped in with “NO, NO. We are going to find a cure!” I don’t know that she bought that. She wants to believe it. But more than anything she wants to know WHY. Why did this happen? “We are each unique and none have the same sets of symptoms or have the same things that help. Why? Why did this happen?”
Not being one to keep this to herself, Rebecca immediately reached out. She was telling everyone she saw about her “condition” from the moment she stepped outside the ER that night. It didn’t matter if she knew you well or if you were a passing interaction like the grocery store clerk. She wanted everyone to know about Trigeminal Neuralgia.
But the first year was really rough. She was scared and “depressed out of my mind”. At that time there was very little support. Or she hadn’t found it yet. The support she did find online seemed to be for those people that had failed procedures, for whom procedures made it worse, people that couldn’t take medications. For a newcomer, reading that was devastating! So she spent the whole first year thinking “Is that my future? Is that what I have to look forward to?”
Then she happened to come across a design by Nikki Samuel, a woman she now calls sister. There was a website TNnME.com and a Facebook page www.facebook.com/oct7thTNawareness that made her aware that there were things happening all over the world by a small group of people just like her. Many of them were in “way more pain” raising awareness, raising donations, making videos, social media graphics, petitions and much, much more … doing the impossible. This was something positive that she could do from bed, the couch, the bed again … she knew she wanted to be a part of this. But where would she fit in? She hates email, has anxiety when given “official” communications and “cusses like a sailor!” (Believe me, this interview has been interpreted!) So she observed, made friends, joined groups, then started creating her own groups, administered a few others, made a few hundred awareness designs herself and then started managing the TN Awareness store on Zazzle. She discovered that she likes to fill in wherever needed until someone better qualified for that job comes along at which time she moves onto the next “empty seat”. She discovered that all those amazing friends she made along the way also wanted to help in some way. For the past three years now she has used her knowledge of them to suggest what “seat” they might enjoy. She now considers herself an usher! She finds people empty seats! There is nothing too large or too small that can’t be filled with all those people who want to help, all those people behind the scenes that encourage and motivate people to use their talents. (She encourages them to reach out to Toni Saunders).
Meanwhile, she tried Tegretol for the second year. It helped as the side effects weren’t too bad at first, but the more the dose increased the worse the side effects became, until it became intolerable. She remembers one day going to put on her underwear and thinking “OK, I have two legs. Why the hell are there three holes?” She can’t describe what the medication does to you. While it may make the pain tolerable for some, the side effects cannot even be listed. You may forget your name, what to call a pencil, (how to put on underwear), where you are going. You don’t know how you will react to it or how you will react to it from one day to the next. “I felt like I had a tornado inside my brain … sometimes you just have to laugh and say ‘where did that come from?’” As an example, one day she asked her husband to hand her the TV remote and it came out as “pass me the purple hippo”. The thought process was like being drunk.
“Some of the biggest fighters for awareness never leave their homes because they can’t, but that doesn’t mean that they aren’t fighting. I have a friend who says it best. She says ‘Hope whispers, it doesn’t scream.’ We’re all whispering but we’re all coming together and we’re coming together all over the world and we’re screaming for the first time… we’re meeting each other for the first time in history. Having TN is life changing. You never go back from that moment. You are no longer on your own. I have the ability to fight for those who can’t scream as loud as I can.
A new medication then “hit the market”, Oxtellar XR, a time-release, which she has been on for the past two years. Since it slowly releases the drug into her system and she isn’t being dumped with a mass dose several times a day, it has allowed her more quality of life. She has brain fog for minutes at a time instead of days! That has been very beneficial. But, again, as time goes on she has had to increase the dosage till now the side effects are becoming troublesome. “It’s that constant being stuck between a rock and a hard place. Do you up the medication so you have to recover twice? Once from the pain and once from the medication … or stay at the level you are at and deal with the increase of pain levels. It’s a cycle.” (The generic form of this drug does not come in time release form and a lot of people cannot afford the $400 a month cost since insurance doesn’t cover it. Another why.)
“We know that there is an attacker that lives in our home and we accept that it is going to attack us. We don’t know when it is going to happen, we don’t know how bad it is going to be. It may just slap us around a little bit; it may stab us; it may beat us unconscious, but we always get up. I think that is the biggest part of my message … that we always get up.”
She woke up one day and decided she wasn’t going to be afraid anymore. TN will attack no matter where she is, what she is doing, so she decided to do what she wanted to do, what she felt compelled to do. Rebecca feels very lucky. She can drive! She figures the worst that can happen is she pulls over until the attack ends! She’s done a lot helping others with TN. Once she had a TNer move in with her until disability came through and then moved that same person to another TNer’s home in another part of the country so they could help each other. Another time she and another TNer went to the high school graduation of the daughter of a friend who had died due to the meds … just to show support and to honor their friend, the girl’s father. (Although TN is not classified as a fatal disease, sometimes the medications do kill.)
She is in the early stages of progression. Four long years. She has been treated only with anticonvulsants. “We don’t really have a medication for TN. We’re piggybacking off medication used for epilepsy.” Again, Why?
There was an occurrence in Rebecca’s early life that could have had an influence in the creation of TN. When she was 8 or 9 years old she had an infection in the bone marrow of one of her toes, which took a month or so just to figure out. There was the infection, which went ramped, the high fever that she ran for that same month damaging her nerves, and that she was on intravenous antibiotics for almost a year, which could have had long-term damage to the myelin around her nerves. “They didn’t know 30 years ago what IV Antibiotics do to your nervous system.”
Her pain is now occipital and in her ear … the side and back bottom of her head and slowly creeps up from the jawline. But she now knows that certain things trigger it. It can be self-induced. For her it is weather (the hot sun or the cold wind), stress and sugar! I was speaking with her the day after Halloween and she confessed that for the past four years her biggest attacks have been a few days after that holiday! She says she just has no control around all that sugar that her son brings home! She also says TN doesn’t stop her for doing anything. She can still do everything she could before but there are consequences now. And sometimes you just have to do it anyways.
Once a friend dared her to go for two weeks with no gluten, no refined sugar and cut back to one cup of coffee a day. She cursed her friend as she felt sorry for herself; her anger turned to depression and then back to anger. She may even have given her friend death threats. After just one week she noticed a difference. She felt better all over.
She recently shaved a good portion of hair off the side of her head because it hurt! It kept getting in her face and triggering annoying sensations due to her medication doing a good job of confusing the pain signals. It can feel like someone is scratching her face or dry ice is melting and it’s cold or hot or it feels like bugs are crawling on her face or it feels like she stuck a 9 volt battery on her tongue. Some annoying sensations are like a hair on your tongue, which “after the 200th time of trying to find it or sticking your tongue out to get it off but it’s never there for six hours and then it just magically disappears. … So it isn’t always the physical pain that will drive us to insanity. Sometimes it’s a list of sensations that nobody can explain. … Many of us have phantom smells that are never good. It always smells like dog crap or burning electrical wires or garbage.”
“We have to learn to laugh about it. … Most of us talk to our TN like it’s an obstinate two year- old. ‘Shut up.’ ‘Not now.’ ‘Stop it. Leave me alone.’ ‘If I have to get up one more time.’ Like it’s going to listen. We don’t know if it is the medications that are making us weird or the disease itself that is making our brains weird, we don’t know.” she chuckles.
Rebecca has created a great support group for herself, starting with her husband. No one can know what it is like if they don’t experience it themselves, so just his being there for her and not judging is enough.
But she also has an amazing social network. She loves that people are getting together and getting to know each other personally on Facebook or other social media. Then they finally get to meet each other at events or benefits. The Facial Pain Association Conference has been instrumental in bringing these pals together … as the squeals of delight in the back of the room testify. They finally get to meet that person who knows every detail about their life and they share every detail of theirs. Rebecca even drove six hours to participate in “Race to Save Face” in Ohio this year!
Rebecca is quite a networker herself. Since she came out of the emergency room that first time asking everyone she met if they knew what Trigeminal Neuralgia is she says she hasn’t shut up. “I’ll tell anyone, anywhere. The world needs to know about this. I didn’t know about it! You have to tell. Nobody will know if we don’t tell. There are reasons some people can’t. (She always sees more than one side to anything we talk about!) They’re still trying to work … have no choice but to work. No one will hire them if they go on their Facebook and see a bunch of Trigeminal Neuralgia stuff. They’re gonna Google that. I don’t have to hide. I don’t have to. But because I don’t have to hide, I better make a lot more noise!
Rebecca says her neurologist was “devastated” when she moved from 4 hours away to be in the same town as his practice “because that means I can come in — whenever!” She’s been teaching him about TN so that he can find informed answers for her. He does research and reads articles … then doesn’t tell her what to do but rather shows her that she has options. Because she told him that’s what he needs to do! She passes on her newsletter to him each month and she doesn’t ask him to put it in his waiting room, as she says, “I tell him! You’re going to put these (flyers, brochures) in your waiting room and I’m going to come around and see that they are still there!” or “When I tell you no, I’ve checked out that medication and I’m not comfortable with the side effects of ‘extreme outbursts of anger’ do you want me to move in with you for two weeks while I try it?”
“You own your body. You own your disease and one thing TNers will never be accused of is of not knowing about the treatments and medications available to them. We know about all that stuff, we’re just not (superlative) happy about it! At best we have a ‘maybe’. Maybe it will work. We are tired of maybe. We want more than maybe.”
She says she’s not going to take this lying down. She’ll keep moaning and complaining until something changes “just to shut us up” (apparently there are many others out there bitching also). As she said “I am just one of the soldiers. Put us all together — you’re gonna hear us.”) “The mystery is what gets us. There is no shortage of TNers that will step up to trial research. Whatever you’ve got, give it.”
Advice from Rebecca:
– Rebecca suggests that you keep a journal. You will be amazed at what affects you that you wouldn’t have dreamed of. It can be the tiniest of things. Like mascara. It can be such a huge deal. She doesn’t know if it is the sensation of it touching your eyelids while putting it on or the way we women contort or distort our faces to apply it or just the heavy feeling it has on your eye.
– Hang on. Survive somehow. “Everyone’s different. You’ve got to find your own way to survive. My way may not work for everyone. That person’s way may not work for everyone. But find it. It’s out there. Keep looking. Keep asking questions. Keep annoying your doctor.”
“I’m tired of surviving with Trigeminal Neuralgia. I chose to live. Does that mean that I’m going to provoke it at times? Sure! I’m just going to live my life and when it attacks me it attacks me. Apparently there isn’t anything I can do about it anyways.”
She gets attacks periodically through out the day, it depends at what level. “70% of the attacks during the day are changed by the medication so they’re tolerable and 30% are like I’ve been tazored in the face or I’m chewing on electrified thumbtacks. On this medication it is a couple of minutes, 15 or 20 times a day. I can survive that, you know? … Sometimes I do just survive. Sometimes surviving is all you can do. The times of the day when I am able to live? I’m going to live to the fullest extent! “We took my son zip lining for his birthday. I was terrified! It’s outdoors, it was windy, I’m rubbing the tree tops, I realize this summer sun hurts just as much as cold wind does, but I DID IT! I paid for it, but I DID IT!”
– Don’t be afraid to tell your doctor “No, I’m not comfortable forgetting how to put underwear on. We need to find something else.”
– If your doctor doesn’t listen to you, find a new doctor.
– Just keep going forward and don’t look back. “I hear people complain ‘I’m not the person I used to be.’ I don’t know about anybody else, but I am a lot better person now than I was before TN!”
“We’re all better people now because we understand pain. Every level of pain. And that makes us more empathetic, it makes us more compassionate, it just makes us better human beings.
“The one thing every human being incurs in life is pain. We understand that on a level most people can’t. So don’t beat up on yourself. Treat yourself like you would treat someone with a painful disease. Don’t be upset when you forget to pay a bill or you can’t do something because you were in so much pain … or so heavily medicated. Please be kind to yourself. You’re sick! Give yourself accommodations or limitations but understand that you are a better person now than what you were and that’s just going to continue to get better.
“This disease is not going to take us unless we let it. And if you feel yourself slipping, all you have to do is reach out. There are thousands of us waiting and ready to help. Support groups for every walk in life out there. I don’t care what country you are from, political back ground, religious background … there’s a support group out there for you! Find us. We’ll help you find one that’s right for you. There are hundreds of them on Facebook now. … You’re not alone!”
After four years of battle she has come to the conclusion that her future is in her hands! “TN can create you or destroy you. That choice is ours to make.”