Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. Today’s post will spotlight a Chronic Illness called Atypical Bilateral Trigeminal Neuralgia.
Atypical Bilateral Trigeminal Neuralgia is a rare type of Trigeminal Neuralgia causes severe nerve pain on both sides of the face. Simple things like brushing your teeth or putting on makeup can cause excruciating facial pain.
Savanna loves to crochet, cuddling with her cat, reading and music. She is also a fierce Chronic Illness Warrior!
She has several other chronic illnesses. The include IBS, Arthritis, Neurological Deficiency Syndrome, Fibromyalgia, PTSD, MDD and GAD.
Thank you for sharing your story with us!
Briefly explain your illness
Atypical Bilateral Trigeminal Neuralgia causes shocking, burning, stabbing, aching pain in the face, scalp, teeth, eyes- anything connected to the Trigeminal nerves.
My other illnesses are complex together, but I suffer pain, loss of balance, gastrointestinal issues, fatigue and a host of other symptoms in general.
How has your illness impacted your life?
I am currently unable to maintain a “regular job.” Our disability system is complex and flawed and I am fighting for benefits. I miss a lot of activities with friends and family.
Some days it’s a fight to get out of bed. Talking and eating worsen my Neuralgia attacks, as does a gentle breeze, touch or cold, so activities outside can be limited sometimes.
The positive side is that I have gained empathy, understanding and compassion for others who suffer chronic ailments or that are simply going through a rough time. My illnesses take away from day to day life, however I think it has given me that wisdom and a better understanding of the struggles some face.
How long did it take to get diagnosed?
11 years for the Trigeminal Neuralgia and 2+ more for the rest.
Why do you think it took that long to get a diagnosis?
It’s a rare condition and most doctors seem to know little of it. There’s the old saying doctors have that when you hear hooves, look for horses and not zebras. Then there is also the insurance hoops you must jump through.
I can’t tell you how many times I wasn’t taken seriously simply because I was a young female, and how many more times I was told it was psychosomatic.
It took a stroke of luck, my dentist knowing a specialist with an interest in symptoms like mine, before I met someone who took a closer look at my condition and give me the diagnosis of Atypical Bilateral Trigeminal Neuralgia.
How is your life different now compared to a few years ago?
Well I’m certainly not as active as I once was and have lost the ability to be financially independent. Some of my friendships have drifted because I am unable to participate in some things. It hurts not being able to work and be very productive.
That said, I have a closer relationship with my parents and I have gotten much better at my hobbies. My values have changed. What is important to me has gotten less material and now I focus on the people in my life and how I pass my time, rather than how “successful” I am.
Everything I do is much more worthwhile and I enjoy and savor things more now. I’m happier emotionally, just more tired mentally and physically.
What do you do on you bad days to make them better?
I rest with my cat and remind myself I am allowed to take a break. I think of the things I am so grateful for. I might take a bath and read a book or crochet, draw or watch a movie.
Anything warm and soft makes me happy, like stuffed animals and cozy blankets! My phone or tablet enables me to communicate more frequently with those I love, so I take advantage of that. Sometimes resting and doing nothing at all is the best thing one can do!
How do you handle the isolation you may experience because of your chronic illness?
I keep people I love as close as I can. My animals and hobbies are integral to my mental health and keep me busy. In terms of not working, I have to remember that to work is not the only thing of value that I can do in life.
Definitely the companionship my animals offer is huge and I don’t know how I’d cope without them when no one else is around. I would say that through all of this, I have gained more appreciation for those who have stuck it out with me.
I’ve always been a bit of an introvert so I do have to work even harder now to maintain friendships, but I think I am a better friend now, too.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Keep going. It’s okay to feel hopeless and alone, but persist on even when you feel that way. All it takes is one right person to recognize what’s happening and get you on the right path.
If a doctor is not helping you, get a new one if you can! Don’t be afraid to stand up for yourself because at the end of the day, you are your most powerful ally and advocate. You know your body and your symptoms. Don’t let insurance and doctors push you down. Keep fighting for yourself. You are worth it, your health is worth it and your quality of life is worth it! If you’ve just been diagnosed, learn all you can about your illness(es.) It can be overwhelming and relieving at the same time.
Don’t be afraid to see a mental health professional to help process everything. A pain psychiatrist was immensely helpful to me. Get a second opinion if it makes you feel better.
Don’t be afraid to ask for help. Know that you aren’t any less because of a disease. It can be scary and life changes but you must find what makes everything worthwhile to you personally!
What is Atypical Bilateral Trigeminal Neuralgia?
According to Mayo.com, Trigeminal neuralgia symptoms may include one or more of these patterns:
- Episodes of severe, shooting or jabbing pain that may feel like an electric shock
- Spontaneous attacks of pain or attacks triggered by things such as touching the face, chewing, speaking or brushing teeth
- Bouts of pain lasting from a few seconds to several minutes
- Episodes of several attacks lasting days, weeks, months or longer — some people have periods when they experience no pain
- Constant aching, burning feeling that may occur before it evolves into the spasm-like pain of trigeminal neuralgia
- Pain in areas supplied by the trigeminal nerve, including the cheek, jaw, teeth, gums, lips, or less often the eye and forehead
- Attacks that become more frequent and intense over time
- Pain affecting one side of the face at a time, though may rarely affect both sides of the face (*NOTE: Savanna has this type since it is Atypical Bilateral Trigeminal Neuralgia)
- Pain focused in one spot or spread in a wider pattern
For more information about Atypical Bilateral Trigeminal Neuralgia, visit the Facial Pain Association website.
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