NEED HELP PAYING FOR TREATMENT FOR CHRONIC PAIN CONDITION

Trigeminal neuralgia sucks! Chronic pain relief is expensive. We need some help to pay for medical bills and medications, please. If you could throw in a bit of money, that would mean a lot to us.

In a nutshell, I have a very painful invisible chronic pain nerve condition called Trigeminal Neuralgia (aka "The Suicide Disease") in the left side of my face. Also TMJ. I need expensive medicines to function. Insurance does not cover everything. I am not working because of this mess, so I have no income. If you could chip in, that would help us out a lot. That's the short story.

The longer story: In December 2023, Aaron took me to the ER due to pain on the left side of my face. I was immediately diagnosed with Trigeminal Neuralgia. There wasn't an accident or anything sudden. Just part of being a 53-year-old female. Not to put too fine a point on it, Trigeminal Neuralgia is known to be one of the most painful conditions known to humans.

Have you ever had an ice cream headache? Then you have had experience with your trigeminal nerve. The trigeminal nerve is one of the largest nerves in our head. It splits into 3 branches to fan out throughout the face and forehead. Often, the cause of the nerve pain is a blood vessel pressing on the nerve, which over time causes the protective myelin sheath to wear away, exposing the nerve like a live wire that fires with every pulsation. In my case, they cannot see the compression in any of the many MRIs, so I am not a candidate for surgery. This is not uncommon. What this means is that the nerves in my face, chin, neck, forehead, and eye are flaring. It is very painful. And I also have TMJ, which causes an additional layer of misery, including on the right side of my face. Sadly, Trigeminal Neuralgia is a progressive condition, so I am getting worse over time despite seeing more doctors and taking more medications. Nevertheless, I am keeping in good spirits most of the time.

This is why I don't get out much anymore. I MISS YOU SO MUCH! To reduce debilitating nerve pain flares, I have new limits. I sometimes don't recognize myself anymore. Life is very different. It's hard to deal with sometimes.

Pain triggers include cold (goodbye ice cream, winter weather rambles), wind (birding), laughing, smiling, talking (goodbye social life, jobs), chewing, stress, bending forward (gardening challenge), strong sunlight (Nature), loud sounds (movie theaters), anything touching areas of my jaw and neck (collars, scarves, certain coats, and even my own hair—see photo of new mullet hairdo). And then there are the meds: somnolence (extreme sleepiness), coordination problems, brain fog, confusion, memory problems, double vision, head tics, and digestive issues. My goal is to keep pursuing different treatments so I can one day get off the medications and get my life back.

Then there are the medications: 2 anti-seizure medications, an anti-depressant, vitamins, herbal supplements, and a host (9 at last count) of topical analgesics. This gets expensive. For example, one of the compounded medications costs $127 out-of-pocket for a month's worth of pain relief cream. The vitamins for one month are $59. And the gas for trips to the medical professionals 3-4 times a week, etc., etc., etc. This is why I am asking for help.

The good news is that I have a great team of doctors and specialists helping to tame this beast. That includes my primary care doctor, neurologist, neurosurgeon, pain management specialist, naturopath (I LOVE NUNM in Portland!), acupuncturist, dietician, therapist, and pharmacist. And several online support groups. You know how I love the research. We are very fortunate to live in an area with excellent resources.

Thank you for your friendship and support. It means the world to me.