Tiffany Lynd was only 18 years old when she first experienced the pain of Trigeminal Neuralgia. Eighteen, at the precipice of the rest of her life. Eighteen, anticipating all that could be subsequent. Lynd dreamed of working in sports – never that she would begin experiencing symptoms of facial neuralgia her senior year of high school.
The pain began on the lower, left side of her face and is described as “stabbing” and “sharp” – like an icepick or burning rod stabbed into her cheek. Lynd was examined by local physicians in her small Ohio town, however, was told at the time that it was unlikely she was experiencing Trigeminal Neuralgia.
“Everyone kept telling me, ‘you’re too young,’” Lynd says, a response which prompted visits to neighboring cities for consultation with specialists.
It was an oral surgeon first spoke the words that would change her life forever: Trigeminal Neuralgia.
“It changed my whole life,” she says. “I didn’t go to college because of it. It just changed the whole course of my life.”
The time span between first symptom onset and diagnosis was 1.5 years. Prior to her symptoms, Lynd was entirely unfamiliar with chronic pain disorders. She took to the day’s prominent social media platform Myspace, seeking connection with those who could empathize over a shared diagnosis, and was grateful to find a couple such individuals. However, in a time when the internet was not the well of information it has since developed into, Lynd relied on public libraries for literature on her illness – a search which yielded few results. So began her journey for knowledge and relief.
Lynd’s diagnosing oral surgeon initially prescribed pain medication and she was subsequently given the nerve-pain-reducer/anticonvulsant Carbamazepine from an emergency room doctor. However, Lynd soon discovered that not only was she allergic to Carbamazepine, but also muscle relaxant Baclofen and nerve-pain-reducer/anticonvulsant Topamax. Although Lynd was prescribed anticonvulsant Gabapentin for several years, she ultimately made the personal choice to stop taking the pain medication after it stopped providing relief.
She now only takes her thyroid medication and blood pressure medication whenever she has a pain flare. Additionally, she has taken Fentora, a pain medication. The prescription regularly costs $8,000 per month for 112 pills, however, a grant allowed her to receive it free of charge. That cost is for the 200 milligram pills and increases per milligram amount. To replace Fentora, Lynd and her doctors are researching medical cannabis, which is legal in Ohio.
“I have not tried it before,” she says. “My family doctor is all for it. … I’ve tried CBD oil where you just drink it. But, it just kind of relaxes you.”
Lynd says while she has had a largely good experience with insurance companies paying for procedures, receiving assistance for medication can often be difficult.
“They don’t want to pay for them or don’t think you need them,” she says.
Lynd has been seen at seven hospitals and has undergone 17 surgeries, her first being a Gamma Knife Radiosurgery in 2000, which provided relief for approximately 11 months. She was then seen at the Mayo Clinic where she underwent a microvascular decompression in 2002. Several compressions of the nerve were located at that time, leading doctors to believe that the disease occurred from congenital malformation and subsequent compression. Lynd experienced pain relief following her 2002 MVD for five years.
Following the return of her pain, Lynd underwent multiple Percutaneous Rhizotomies and MVDs. During one operation, the surgeon severed the sensory portion of the trigeminal nerve in an effort to achieve numbness of the face. However, the pain persisted and resulted in a diagnosis of anesthesia dolorosa – translated: “numb pain” – in which a misinterpreted pain sensation continues in the affected area despite the nerve’s touch sensation being either eliminated or diminished. Lynd subsequently underwent another operation in 2012 with the intention of entirely severing the motor portion and re-severing the sensory portion of the nerve. The pain, however, returned worse than before after approximately six months. Additionally, Lynd is now deaf in her left ear and blind in her left eye. She is unable to chew food and is only able to consume soft foods and liquids. Lynd says she now regrets severing the nerve considering how it has negatively impacted her specific, individual case.
COMING TO TERMS
Undergoing multiple surgeries in hopes of relief, only to have the pain return is indescribably challenging, Lynd says. There were times she did not know if she could go on.
“There’s no explaining when the pain comes back, the fear and frustration. You feel so let down,” she says. “I had a neurosurgeon who told my parents that, ‘she’s either going to kill herself or she’s going to accidentally overdose.’ But, I think through God and my kids, I got through.”
Lynd’s sons: 15-year-old Eli and 17-year-old Isaiah. Her voice comes to life when she describes them as her motivation, purpose, and reason for living.
“I don’t know where I’d be without them,” she says.
Lynd acknowledges that her children have been affected negatively by Trigeminal Neuralgia, yet she says she is grateful for their continued love and support.
“They tell me it’s made them better people,” she says.
It’s difficult for Lynd to pinpoint exactly how TN has changed herself, however, considering that it’s been part of her life for 25 years – and especially because symptom onset began at highly pivotal developmental age.
“I have lost a lot of memories [as the result of multiple operations],” Lynd says. “I don’t remember a lot. A couple of the surgeries were really rough afterward. I was in the hospital because of brain swelling. People will send friend requests on Facebook that I supposedly went to school with. I don’t know who they are anymore. … You may have known Tiff back then, but the Tiff now is Tiff 2.0.”
Lynd also sees in herself some of the same tendencies that young, frightened teenage girl employed for protection.
“I still push people away. In my mind, I’m protecting them,” she says. “I know that’s hard to let people see you vulnerable. A lot of times, people don’t know the situation. I feel isolated. Sometimes you feel people will look right though you.”
TN entirely rerouted Lynd’s life, forcing her to rediscover herself and set a new course. She aspired to work in the sports industry prior to her symptoms onset and instead had to adapt to jobs in which she would not be forced to talk for long periods of time – beginning initially as a realtor and later transitioning to loan processing and then a loan officer. She has learned to adapt to her situation. Lynd’s typical day starts when she sends the kids off to school. The rest of the day is spent staying busy to keep her mind off the pain. She is highly involved with the boys’ education and enjoys cooking and baking in addition to doing yoga and meditation to find a measure of mental and emotional relaxation. She is an avid sports fan – especially football and the 49ers – and enjoys attending games and playing basketball with her kids. Lynd is also a writer, composing poetry and keeping journals documenting her thoughts and feelings.
“It’s a good way to get my frustration out,” she says. “I went through a lot of different emotions. I deal with a lot of anger. Anger at the whole situation.”
Often, she has difficulty sleeping due to the pain and typically does not sleep well or through the night. Lynd keeps record of her attacks and says that she is “electrocuted” about 200-250 times per day. The burning sensation, however, never is mediated. Nerve blocks do not assist with the burning pain.
One aspect of Lynd’s personality which she knows if gone, is a carefree nature. Simultaneously, despite everything which has changed, she says TN has taught her to be deeply appreciative for what and who she has in life.
“I take advantage of the good days because they don’t come along very often,” she says. “The main thing that’s changed is that I never take anything for granted anymore. I am just so lucky and blessed to wake up and live the life I do every day.”
FACING THE FUTURE
Lynd experiences Trigeminal Neuralgia on a daily basis and continues to make plans for future treatment. She is currently scheduled for a motor cortex stimulation, which will be her 18th surgical procedure since diagnosis.
“(The surgeon) said he’s done it on others who have had the nerve cut and they have gotten some relief,” she says. “He said, ‘I bet you’d take 10-percent relief.’ I said absolutely.”
Lynd also continues the nerve blocks which she receives every 2-3 months. The relief typically last about 5-7 days and does not touch the burning pain sensation. She says she is grateful for what relief she gets, however.
There have been excellent doctors in Lynd’s life, mingled with some who have made the situation more difficult. She encourages medical professionals to listen to patients, be honest, and become more educated on chronic pain disorders.
“They need to be more educated and not jump to conclusions,” she says. “Some of them are so rude. Listen and be more understanding. … I’ve been to the ER and had a doctor look at me like I’m nuts. It’s just frustrating.”
To family members of those with chronic pain, Lynd encourages expressing compassion even if empathy is impossible. Since day one when her TN symptoms began, Lynd says that her parents have stood by her side unconditionally and fought for her wellbeing.
“Without them taking me all over looking for answers, I don’t know where I’d be,” she says, adding that her brother is also both her committed supporter and best friend.
Lynd says her family may not always understand what she is feeling, but they still provide unconditional support in her times of need.
“Even though they tell me they don’t know what I’m going through, they’ve always been there and I know not everybody’s family is like that,” she says. “Just stand by them no matter what.”
This type of understanding, Lynd says, is critical to maintaining relationships. Due to a frequent lack of this relational aspect, she has lost friends along the way.
“I don’t go out much with them and they don’t understand why,” Lynd says. “I just don’t want to be in a situation where I’m out and I get a bunch of pains.”
Social media, on the other hand, has been critical in both maintaining and creating relationships, Lynd says. She fondly lists name of her TN family, other patients whom she’s met across the internet. They even attend each other’s surgeries and their children spend time together.
“Without the internet, we all wouldn’t have met,” she says.
The internet has also been pivotal for Lynd because of increased access to research – as opposed to the libraries she used to browse with difficulty at the onset of her symptoms. This is how she first discovered the Facial Pain Research Foundation. Knowing that someone is out there advocating for her, Lynd says, brings great comfort.
“There are really no words to express how thankful you are. I’m so thankful for everything they’re doing,” she says. “I know that they are putting a lot of time and effort and if they only knew how much they’re helping us.”
Hope is what Lynd hinges her future on, like so many others in her position. For Lynd, it is the key ingredient of daily life and the greatest admonition she would offer to the frightened 18-year-old girl she once was and all the others who find themselves in her shoes.
“Don’t ever lose hope. I have to believe there’s a cure out there,” she says. “They’re never alone.”
Hanna Shae Smith is a writer for the Facial Pain Research Foundation, award-winning journalist, student clinician, and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she studies chronic pain neuropsychology and neuroscience, teaches emergency basic life support, and volunteers doing search and rescue/recovery.