Jess's Journey, an Invisible Battle: Faith in the Face of Chronic Pain

For the past 6.5 years, Jessica has battled Refractory Atypical Trigeminal Neuralgia, a chronic and "invisible" condition that compounds her already debilitating pain. At first, we thought it was just really bad headaches or migraines. However, the condition has progressively worsened over the years, evolving from manageable discomfort into a relentless, unyielding torment.

Unlike the sharp, electric shocks of classic trigeminal neuralgia that come and go, Jess experiences constant background pain. The only thing that changes is the intensity, causing unpredictable pain spikes because everything is a trigger. She battles several types of pain: her eyes constantly ache and burn, a relentless sensation that never goes away, making even the normal use of her eyes extremely painful.

Overlapping this is a separate, sharper agony where it feels like someone is holding an icepick against her right temple, pressing, and twisting it. This specific pain radiates into her right eye, causing deep eye pain. Adding to this is fluctuating jaw pain, and a recurring neurological itch with no rash that is impossible to scratch and only adds to the distress.

This constant, unpredictable nature of her condition often makes social interactions incredibly painful. The effort required to engage and interact—talking, smiling, laughing—is so intense that it often leaves her exhausted and withdrawn. She used to have periods of being pain-free. However, as her condition has progressively worsened over the years, she no longer experiences pain-free episodes. She is never not in pain.

A Life of Exhaustion & The Vicious Pain Loop:

The pain is only half the battle. Jess is always exhausted. No matter how much sleep she gets, she never feels rested. Her forehead and face always feel tight and scrunched, even when she is trying to relax.

This creates a vicious pain loop:

• The constant pain signals cause muscle tension and tightness, leading to permanent contraction of the facial muscles in an effort to guard against the constant firing of pain signals, which causes more guarding, creating a vicious cycle in itself.

• This tension amplifies the pain.

• The unrelenting pain in her eyes and forehead disrupt sleep, leading to further exhaustion and fatigue.

• The exhaustion intensifies the pain, and round it goes.

It is a cycle that feeds on itself, making daily life agonizing. There are still "good days." But anymore, those days are just slightly less bad than others.

The Hidden Battle: VANCOUVER Syndrome

Over the last 3-4 years, Jessica experienced chronic, persistent episodes of shortness of breath followed by a distinct tickling sensation that forces an uncontrollable, reflexive cough. She has documented hundreds of these coughs— 149 in a single day alone —a relentless cycle that also disrupts sleep, adding to her pain, exhaustion and fatigue.

She also experiences episodes of an inability to initiate swallowing, like she's forgotten how, and has to pause and think about how to do it, instead of it being a natural reflex.

These are just some of the symptoms we previously thought were unrelated. We are now learning that all of these previously dismissed symptoms were actually likely critical pieces of a deteriorating health puzzle.

Refusing to give up and determined and desperate to find answers and relief, Jess has become her own strongest advocate. Despite being in constant pain and always exhausted, she has spent countless hours documenting her pain and symptoms since February 04, 2020. She's been informing her providers of her various symptoms through patient portal messages and during office visit conversations over the years. She has even mentioned that she had started to wonder if these seemingly unrelated symptoms she had been experiencing and documenting and relaying to them all these years, could be related after all. Her symptoms, messages and concerns about a possible connection have been repeatedly dismissed, yet her chronic pain and symptoms have not only remained, but they have also persisted and progressively worsened. Frustrated with feeling unheard and dismissed about the severity and progression of her symptoms and the pain she is in constantly, she started researching her symptoms and piecing together medical literature to understand what her doctors have missed, hoping to help them figure out what's going on.

Her research points strongly to VANCOUVER Syndrome (Vagus Associated Neurogenic Cough Occurring Due to Unilateral Vascular Encroachment of Its Root), a rare condition where a blood vessel compresses the Vagus nerve, indicating possible multi-cranial nerve compression of the Trigeminal and Vagus nerves.

Thanks to her relentless self-advocacy, Jess finally secured a referral to an Interventional Pain Specialist, had a consultation, and is in the process of waiting for insurance approvals for potential pain management options suggested by the Specialist.

A Long Road of Failed Treatments & Inconclusive Tests:

In our quest for answers, we have tried every other method of treatment, including over-the-counter creams, balms & pain relievers, as well as acupuncture:

• Jessica has cycled through 8 failed medications. Nothing alleviates the pain, not even a little.

• She has undergone multiple tests, lab work, panels, MRIs, EKG, and CT scans.

• She has had procedures including a skin biopsy for small fiber neuropathy and a spinal tap to check for MS.

• She has had a consult with UW Neurology to discuss MVD surgery but has been denied as of now.

• She received a referral for a Sphenopalatine Ganglion Block but was denied by insurance (insurance even doubled down on denial upon Jess's appeal), stating that the procedure is "experimental" and "does not show enough evidence of efficacy for 'facial pain.'"

Everything comes back clear, leaving us with more questions than answers. This relentless cycle of testing and failed treatments, and the delay, dismissal and denial of symptoms, tests and treatments, has only added to the financial and emotional stress and strain on our family.

A Prayerful Fighter Who Doesn't Give Up:

Watching Jessica endure this constant, hellish pain and exhaustion while trying to maintain a normal, functioning life has been heartbreaking for our family. It's hard to watch her battle this and feel helpless. It's ruined her life in so many ways, but she still works hard to take care of our family and herself, using that drive as her weapon to fight against this, refusing to let it steal her independence, her identity, and her joy.

For years, she has masked her agony to keep a job, pay bills, and care for our family, refusing to let the pain win. But living in a daily nightmare eventually takes its toll. Recently, the pain became truly unbearable, forcing her to quit her job.

Despite everything, she is hopeful and prayerful:

"This journey has only strengthened my faith and deepened my relationship with the Lord. I couldn't do this without Him. The Lord my God sustains me. He is my refuge and my strength. I'm tired and I don't understand, but I trust Him and His character. I have faith that He's using this for my good and His glory. It's part of my testimony to His love, mercy, grace, goodness, faithfulness, and provision in my life. His answers, miracles and blessings are already on the way! I just keep praying for His help to suffer well. Through it all, God is still good and He is still in control."

Through this valley of misdiagnosis and relentless pain, our faith has been our anchor. We hold tightly to two promises:

"God is our refuge and strength, a very present help in trouble."—Psalm 46:1

And the words that sustain us when healing feels distant: "And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me."—2 Corinthians 12:9

Your prayers mean more than you know, friends. They are a lifeline for our whole family, and your faith is a light in our world. Please keep praying for us.

Our Immediate Hope: Being Present for Our Son

Jessica’s inability to work has left our family in a precarious financial position, facing a critical gap in earnings while we wait for approvals from Washington State PFML and Social Security disability—a process that can be lengthy and uncertain.

Compounding this stress, our son's wedding is coming up in September. We are desperate to be present and celebrate this milestone without the shadow of financial collapse hanging over us. We want to focus on our son's joy, not on how we will pay the rent next month.

How You Can Help:

We have set a goal of $5,000 for living expenses for the next couple months while we wait for PFML and disability approvals. If we reach this goal, we may extend the campaign to cover additional months as needed.

Your donations will go directly toward:

• Essential living expenses: Rent, utilities, and groceries.

• Transportation costs: Gas and vehicle maintenance for frequent specialist appointments and diagnostic tests.

• Household necessities: Keeping our home running while we support Jess and help her focus on managing and mitigating her pain.

We know many of you are facing challenges of your own, but any gift—no matter the size—brings us closer to stability. Your love and support mean everything to us during this uncertain time.

P.S. If you cannot donate right now, please share this campaign with your community. Your help in spreading the word is just as valuable to us as a donation.

To everyone who has blessed us with your love, support and generosity, whether it be with your prayers, words of encouragement or just sharing-out links, it means the world to us. We are immensely grateful for your love and support. From the bottom of our hearts, thank you! God bless you!