I’ve been on an endless quest of answers while living with chronic illness. Every potential solution is another chance of reclaiming a bit of normalcy. It’s been years of trial and error, where I’ve explored countless treatments options, some more hopeful than others.
Recently, I decided to take a leap into functional neurology, an unconventional approach that I hoped might finally make a difference. Though I knew it was a long shot, it felt like my last major experiment (financially) of 2024. In this post, I’ll Walk you through that experience including the treatments, the ups and downs, and what I took away from the process.
Why Functional Neurology?
Early in 2024, my symptoms took a turn for the worse, and I was at a loss for answers. I had a list of new issues that rapidly developed over the course of a few days. My vision had started to change, I started to get blurred and doubled vision, and after images. I was already overdue for an eye exam, so I decided to schedule one. Thankfully, my ophthalmologist reassured me that my vision hadn’t worsened, and there were no signs of swelling in the optic disc (papilledema).
My ophthalmologist had been with me for years. She understood the complexity of my symptoms and how little relief I had found despite trying various treatments. She had previously suggested vision therapy, but during this appointment, she recommended something new: functional neurology. This path could potentially address not just the visual problems but a wider range of my symptoms.
She gave me a referral to a local center, but I hesitated at first. Functional neurology was known to be expensive, and I was already running low on funds from chasing answers, doctors' visits, and imaging. However, after a few months had passed, and despite various other relief attempts, I was still searching for a diagnosis and some sort of relief.
Eventually, I took the plunge and booked a consultation at the clinic. With my medical leave at my job coming to an end, I felt like time was running out. I knew I was still nowhere near functional enough to return to work, and I needed to try something drastic.
What is Functional Neurology?
Functional neurology is a type of healthcare that focuses on improving and balancing brain function through personalized treatment plans. It can be used to manage a range of conditions including dizziness, dysautonomia, neurodegenerative disorders, traumatic brain injuries, and chronic pain syndromes. Functional neurologists use non-invasive treatments that aims to target underlying neurological dysfunctions.
The clinic I worked with was equipped with state-of-the-art technology and had treated patients with conditions that mirrored mine: dizziness, chronic pain, balance issues, and more. The clinic’s website was filled with success stories of patients who had gone through years of struggle, much like myself, and had finally found relief.
I knew that committing to this treatment would be expensive, but I felt like I had no choice. The traditional medical route hadn’t worked, and if this treatment could offer even a fraction of relief, it would be worth it me. I entered this treatment with a realistic mindset; if I could just feel 15% better, I’d consider it a win.
The Initial Consultation: A 3-Hour Deep Dive
My first consultation was three hours long. This wasn’t a rushed visit where you feel like a number in a system; it was a comprehensive evaluation of my neurological issues. I had never experienced such thorough testing before, and the questions they asked me were ones my regular neurologists had never even considered.
From cognitive assessments to tests that examined my balance and coordination, the clinic checked everything. The examination felt deeply personalized, and I began to feel cautiously optimistic. It was clear they genuinely care about their patients and were tailoring the treatment specifically to my complex case.
Doctors' notes of findings from my initial examination:
Vitals Assessment:
Seated:
Heart Rate: 77 bpm
Oxygen Saturation: 98%
Blood Pressure Right: 151/96 mmHg, Left: 132/86 mmHg
Supine:
Heart Rate: 68 bpm
Oxygen Saturation: 98%
Blood Pressure Right: 148/82 mmHg, Left: 139/80 mmHg
Standing:
Heart Rate: 99-70 bpm
Oxygen Saturation: 96%
Blood Pressure Right: 144/91 mmHg, Left: 131/86 mmHg
Physical Exam Findings:
General Observation:
Oriented to self, time, place, and location.
Speech normal, but hoarseness occurs occasionally.
Eyes: Occasional eyelid flutter observed.
Cardiovascular:
Hands warm and slightly sweaty (hyperhidrosis).
Abnormal capillary refill in both arms.
Pulmonary:
Normal lung function; no accessory muscle use.
Abdomen:
Tender areas throughout, benign mass in liver identified (hemangioma).
Cranial Nerves:
Several findings, including abnormal light reflexes and convergence insufficiency.
Increased muscle tone in jaw, with relief provided by myofascial release.
Sensory & Motor:
Sensation was decreased in parts of my hand and foot.
Reflexes were generally normal.
Mild tremor and reduced coordination during specific tasks.
Diagnosis & Treatment Goals:
Provisional Diagnosis: Dizziness and giddiness (ICD-10-CM R42)
Treatment: A customized neuro-rehabilitation program was recommended.
Short-Term Goals (by first re-exam):
Reduce head pressure and dizziness by 50%.
Decrease the severity of square wave jerks (SWJs) and blink rate by 50%.
Long-Term Goals (by second re-exam):
Reduce head pressure and dizziness by 75%.
Further reduction of SWJs and blink rate by 75%.
Visit Frequency: 4-5 visits per week for 2-3 weeks.
At the end of the consultation, the doctor discussed my treatment plan. It was aggressive, 12 sessions over the course of three weeks and a re-examination on the final day. Given the extensive nature of my symptoms, we decided to tackle multiple issues at once.
My top three complaints were the constant head pressure (which had been plaguing me for over a decade), dizziness and balance problems, and gastrointestinal (GI) issues. Though the clinic wasn’t specifically equipped to address GI issues, we hoped that addressing autonomic dysfunction might alleviate some of those problems as well.
The Treatment Plan
The goal with my treatment plan wasn’t to focus on just one area; instead, we were throwing everything at my symptoms to see what would stick. The doctor explained that by trying a wide range of therapies, we could find something that would offer even a small degree of improvement, and then focus on that for the remainder of the treatment program.
Here’s a breakdown of the different therapies I underwent during each session:
PEMF (Pulsed Electromagnetic Frequency) Therapy: A device was placed on my lower back for about 15 minutes at the start of each session. This therapy was meant to promote healing and improve circulation, and it had a pleasant static feeling.
Vagus Nerve Stimulation: Using a device on my neck, we attempted to stimulate the vagus nerve to regulate my autonomic nervous system. A pulse monitor was used to track my heart rate during the process, and I could see my heart rate drop by about 10 points each time, confirming some level of dysfunction with my vagus nerve.
NormaTec Therapy: On some days, we used NormaTec compression boots to improve blood flow and heart rate regulation. While I had the boots on, I would be lying flat, and the doctor would tilt the table to different angles while measuring heart rate. While it didn’t have a huge impact on my symptoms, and there weren’t any big changes to heart rate (>30bpm), the compression was at least a nice physical relief.
Hot Packs and Massage Gun Therapy: Occasionally, we would apply hot packs to my abdomen and use a massage gun to stimulate circulation in my gut area. I was struggling with chronic constipation, abdominal pain, acid reflux, and more. The hope was to see if it would reduce my pain and improve frequency of bowel movements. While I didn’t notice any immediate improvement in my GI issues, it was a comfortable treatment, and I continue to do some form of abdominal massage every night at home.
GyroStim: One of the most unique therapies was the GyroStim, a pod-like device that rotated around, simulating motion. It was designed to stimulate the vestibular system, which controls balance and spatial awareness. It felt futuristic, like I was prepping for a space mission. While the treatment didn’t provide instant relief, it was definitely an interesting experience.
Cognitive and Balance Exercises: Each session also included a series of eye-head exercises (tracking objects on a screen or real life), balance challenges, and cognitive training (multi-tasking, memory, games). These exercises are hard to describe due to their uniqueness, but they were exhausting and challenging. It was my least favorite part of my sessions because it made me uncomfortable, which means it was necessary to do.
The Treatment Experience: Did It Work?
After about six sessions, I started have some doubts. My symptoms weren’t showing signs of major improvement, and I started to wonder if this would just be another failed treatment. But my doctor remained optimistic, and I was committed to seeing the program through. She assured me that we were only halfway, and that sometimes it takes longer for neurological treatments to “stick.”
I did appreciate the aggressive approach, and I liked the fact that we were trying so many different therapies, but as we got to the last 2 treatments, I had felt the same as the beginning. The doctor remained hopeful and confident we could find something that worked. I could tell she needed more time with me, but it was time to check progress and go over next steps.
When the three weeks finally ended, I had my re-exam. Unfortunately, the results were not as dramatic as I’d hoped. While my heart rate and some of the clinical measurements improved, I didn’t feel much better. If I had to put a number on it, I’d say I experienced about a 5% improvement in my overall symptoms, though my doctor argued the changes were closer to 25% with the objective findings found from the re-exam.
Doctors' notes of findings from my re-examination:
Vitals Assessment:
Supine:
Heart Rate: 58 bpm
Oxygen Saturation: 96%
Blood Pressure (Right): 145/74 mmHg
Blood Pressure (Left): 138/80 mmHg
Standing:
Heart Rate: 80-74 bpm
Oxygen Saturation: 96%
Blood Pressure (Right): 122/82 mmHg
Blood Pressure (Left): 117/84 mmHg
Diagnostic Testing:
Neurocognitive Testing (C3 Logix):
Symptom Severity Score: 78
Standardized Assessment of Cognition (SAC): Above average, scoring 31/50 (50th percentile = 26)
Video-Oculography:
Convergence Spasm (BL), Increased Blink Rate
Improvement: 50% improvement noted in occluded vision tests.
Square Wave Jerks (SWJs): Present in several positions, some improvement noted.
Right Beating Nystagmus: Slightly improved.
Pupillary Light Reflex: Increased blink rate
Convergence Spasm (Left)
Pursuits and Saccades: Some smooth horizontal pursuits; vertical pursuits have decreased gain; horizontal saccades show hypometric movement, while vertical saccades are hypermetric.
Computerized Dynamic Posturography:
Balance and Stability Scores:
95.56% flat surface (eyes open)
89.20% flat surface (eyes closed)
90.91% perturbed surface (eyes open)
81.25% perturbed surface (eyes closed)
Other positions: Scores ranged from 69.61% (perturbed surface, eyes closed, mental task) to 83.52% (perturbed surface, eyes closed, head left).
Objective Findings:
Cardiovascular: Warm hands/feet, cold toes, slightly diminished capillary refill.
Pupillary Light Reflex: Fast response but diminished on the left.
Muscles of Mastication: Hypertonic pterygoids with myofascial release improving heart rate.
Tremor Assessment: 10 Hz kinetic tremor showing improvement.
Gait: Reduced right arm swing, unchanged.
VNG (Video Nystagmography): Shows bilateral SWJ, right beating nystagmus, convergence spasm, and improved blink rate (50% improvement).
Response to Treatment:
Objective Improvements: 25% improvement across symptoms.
Subjective Improvements: Minor symptom changes, hard to gauge due to chronicity.
Moving Forward
In the end, I didn’t get the breakthrough I had hoped for, but I also don’t regret trying the program. It’s easy to look back and feel disappointed when you spend so much time, money, and energy on something that doesn’t produce the results you want. But I knew going into it that my case was complex, and I went into the treatment with low expectations.
Would I go back? Maybe. The clinic wasn’t pushy about continuing, but the cost is a factor that I can’t ignore. For now, I need to focus on saving money and exploring other avenues of treatment that are covered by insurance, but if I ever get to a more financially stable place, I could see myself returning.
Functional neurology may not have been my miracle cure, but it was an experience that gave me new insight into the complexity of my illness. It also reminded me that the path to healing isn’t linear. Each treatment, whether successful or not, brings me one step closer to understanding my body.
Have you ever tried an unconventional treatment for your chronic illness? What was your experience like?
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