Starting to Decline
In 2022, despite experiencing the same symptoms, I saw enough improvement to establish a new baseline of functionality. It was a busy year filled with work-related travel, a new job, increased cycling mileage, and a couple of vacations. Though I experienced discomfort, I was content to have some level of functionality in my daily life.
It wasn’t until the summer of 2023 that I noticed a shift in my symptoms. During rides, I began to feel dizzier, especially when moving my head in any direction—particularly when looking left and then back to center. I also had mild acid reflux during rides, which I assumed was connected to the dizziness and exercise.
There was also a visual component, as certain parts of my ride would worsen the symptoms. I became increasingly sensitive to motion and visuals, particularly near water or on uneven surfaces. Eventually, I stopped riding outside and stuck to indoor cycling.
Around this time, I started having neck issues. It became stiff, achy, and less mobile, and quickly turning my head made the symptoms worse. I remember thinking I was one big symptom away from being disabled and unable to work.
In November 2023, my fears began to materialize. I woke up one day with tinnitus, stood up, and immediately felt vertigo accompanied by a loud, persistent ringing in my ears. I quickly booked an appointment with an ENT to see if an infection was causing the increased dizziness and new tinnitus, but no answers emerged, and my hearing was within normal range.
Frustrated by the addition of yet another maddening symptom, things continued to spiral downward toward the end of December, bringing a new wave of worsening and additional symptoms.
New Wave of Symptoms
On December 22nd, I returned home to spend the holidays with my family. We decided to spend an evening at a nearby brewery where I probably had one too many craft beers, along with several slices of pizza before bed. These are two things I typically avoid but I made the decision to indulge during the holidays. The next day, I was paying the price and woke up slightly hungover and nauseated.
After a cup of coffee, I had two bowel movements within 30 minutes of each other. After the second one, I felt slightly dizzy when standing. As I was going upstairs to join my family, my heart started racing uncontrollably. Shortly after, I felt my stomach seize up, followed by head pressure, vertigo, faintness, disorientation, difficulty staying upright, and full-body tremors.
I thought I was hypoglycemic and needed to eat, especially after two large bowel movements. I started eating candy, nuts, and a cucumber, but it didn’t help immediately, and the shakiness persisted. It took about three hours before I felt a bit better. The rest of the evening, though my head pressure was intense, I showed some improvement.
The next day, I woke up with pins and needles in both forearms, like I was wearing compression sleeves, and the sensation extended into my hands. I felt like I needed to stretch my wrists constantly. My fiancée and I traveled back home, but after five days, the tingling persisted, and stranger symptoms began to appear.
"Here We Go Again"
Right after New Year's, I returned to work, but severe digestive issues reemerged. It started with heartburn, and even water was difficult to swallow. It felt like my esophageal sphincter wasn’t releasing anything into my stomach. Then came intense epigastric pain, tightness, and rumbling. It felt eerily similar to the digestive flare-up I had in 2020. But this time, my condition worsened, and new symptoms appeared daily.
It became increasingly difficult to remain upright, even sitting. The dizziness and lightheadedness were unbearable. I started experiencing vertigo, blurry vision, and severe balance issues. The base of my skull felt full of pressure, and any neck movement worsened the dizziness. I could only look straight ahead looking down made me feel faint. Even simple tasks like washing my hands or going to the restroom were difficult, and I constantly felt disoriented.
Tremors and muscle twitches began in both hands, accompanied by an internal tremble throughout my body. This worsened when I woke up one morning with weak legs. My feet became cold, struggling to maintain proper blood flow, and I experienced crawling sensations like bubbles popping in my left leg, and nonstop muscle twitching in my left calf. I would also get random hot spots on my legs.
A Rapid Decline
Over the course of days, my symptoms continued to worsen. I became temperature-sensitive, and at night I experienced a full-body burning sensation from my face down through my torso, making sleep impossible. It felt like I was burning alive. Fortunately, this symptom toned down after a few weeks.
Strange symptoms plagued me at every moment. It became difficult to breathe through my mouth or nose—it felt dry and closed, worsening with certain head movements. Every time I looked down or sometimes to the left, my turbinates would immediately swell, and my nose would close up. Breathing, in general, became challenging.
I had this overall feeling of heaviness from head to toe. It was hard to support my head, and it felt like it was going to fall off my neck. Any slight movements would send a jarring electric sensation paired with dizziness and/or vertigo. I began to hear crunching, clicking, and water like sounds going down my neck.
I started losing weight again due to severe stomach pain and became chronically constipated. Most of my new symptoms were internal, but I also began losing hair on the outside of my legs, up through my thighs. My skin became dry and aged in appearance for no apparent reason.
At this point, I had become what I had feared would happen for years—non-functional and unable to take care of myself, even with basic tasks. I was forced to take medical leave from my job, as it involved physical work and frequent travel. Time was ticking while I still had job protection. I started booking endless doctor appointments and treatments in search of answers.
Treatments and Testing
For this new wave of symptoms, I became aggressive in seeking answers since I had six months of job protection. In 2024, I underwent an incredible amount of imaging and bloodwork. I'm thankful I had doctors who ordered the tests I requested, even though the results were consistently normal. I'm also grateful that I had good health insurance that didn't require referrals. Still, the lack of progress in uncovering this mysterious illness has been a constant source of frustration.
Conventional Medicine
Gastroenterologist
My first treatment began after I visited the ER during the first week of January. The main focus was on my digestive symptoms, as they were the most prominent at the time. An abdominal CT scan revealed thickening of the walls of my stomach (suspected gastritis), delayed stool transit, a small umbilical hernia, and a distended bladder, but nothing of major concern. I was referred to a GI specialist and prescribed Omeprazole (40 mg), Sucralfate, and Miralax to manage the digestive issues.
I later met with a new GI doctor, and after an upper endoscopy, I was diagnosed with chronic gastritis, negative for both H. pylori and celiac disease. Additional testing, including an abdominal ultrasound and MRI, showed small subcentimeter gallbladder polyps and a liver hemangioma, but nothing serious.
I stayed on Omeprazole for a few months, but it slowed my digestion and worsened my constipation, so I stopped taking it. I consulted another GI specialist for an out-of-the-box approach, and they ordered a breath test for Small Intestinal Bacterial Overgrowth (SIBO). The test results showed an abnormal methane-type SIBO, and I was prescribed Xifaxan, an antibiotic. Unfortunately, the two-week treatment provided no relief.
Despite all these efforts, I continue to struggle with digestive issues, which seem to play a significant role in my daily symptoms. From various strict diets, conventional medicine, lifestyle changes, to vagus nerve stimulation, I still haven’t found an effective way to manage these problems. I remain hopeful that there is an explanation and solution yet to be discovered.
Neurologist
Since most of my symptoms have a neurological component, I quickly set up an appointment with a neurologist. I suspected that about 75% of my symptoms originated from my neck, and hoped the doctor would order imaging of my neck and spine. The neurologist was concerned about a potential CSF leak and suggested that an MRI might reveal signs of it.
Thankfully, the neurologist recommended a full spine MRI. Given my tremors and muscle twitches, an EMG and bloodwork were also ordered. I felt optimistic, certain that something would appear in these tests. However, aside from mild degenerative disc disease in my neck and minor bulging discs in my lower back, all tests came back normal.
After receiving these normal results, I wasn’t given any clear treatment plans or next steps and was advised to follow up in four months. I sought second opinions from other neurologists over the next few months, but no one could pinpoint the root cause.
While each neurologist agreed that I was experiencing some sort of autonomic dysfunction, they struggled to determine the underlying issue. I received several other possible diagnoses, including small fiber neuropathy, vestibular migraine, and occipital neuralgia. Though these diagnoses could explain some of my symptoms, I continued searching for the primary cause, seeking out additional specialists.
Cardiologist
Due to my long list of symptoms—including dizziness, exercise intolerance, shortness of breath, heart palpitations, and heart flutters—my primary care physician referred me to a cardiologist. Though I didn’t think my heart was the issue, but rather autonomic, I was open to exploring any possibility. The cardiologist ordered a 48-hour Holter monitor, a tilt table test, and an echocardiogram.
Both the Holter monitor, and the echocardiogram came back normal. I was particularly curious about the tilt table test, as I suspected it might indicate POTS. I had already observed an increase in heart rate when standing, both at home and in the doctors office. My results always showed an increase of above 30 bpm whether I was fasted or not.
However, the tilt table test revealed no definitive signs of POTS since I didn’t experience fainting spells, though it did show signs of "non-specific autonomic dysfunction." With no heart issues found, cardiology was ruled out as the cause. For treatment, I was advised to increase my intake of water and salt and continue exercising, advice I was already following.
Rheumatologist
With my ongoing skin issues, leg hair loss, and muscle weakness, I decided to consult a rheumatologist. My main goal was to get an ANA (antinuclear antibody) test to check for autoimmune conditions.
The Rheumatologist ordered a series of blood tests, checking for everything from Stiff Person Syndrome to Lyme Disease. To my surprise, all tests came back normal, including the autoimmune screening. I was shocked, given some of my symptoms. Even after repeating the tests, the results remained negative.
I was prescribed a six-day course of steroids to help relieve my head pressure, but while it didn’t improve that symptom, it did clear up a rash on my eyelid. The doctor didn’t recommend any further follow-up and advised me to continue working with my neurologist.
Otolaryngologist
Some of my most uncomfortable symptoms are related to my ears, nose, and throat. I constantly feel like I’m breathing through a straw, my ears crackle whenever I chew or swallow, and I experience periodic tinnitus, ear fullness, hoarseness, and a foreign sensation in my throat. I assumed these issues were linked to acid reflux or silent reflux, which I’ve struggled to manage.
I saw two different ENT specialists in 2024. The first doctor only performed a hearing test, which came back normal. Before seeing the second ENT, I came across a rare condition called Eagle Syndrome after seeing something odd on an X-ray I had during a visit with a chiropractor. This is a condition where an elongated styloid process or calcified stylohyoid ligament can compress nearby nerves and arteries, causing a range of symptoms that aligned with mine.
I brought the CT scan of my head and neck to the appointment, but the doctor found no cause for concern. A nasal scope revealed irritation in my vocal cords, hypertrophic turbinates, and a mild deviated septum in my left nostril. I was prescribed Flonase and azelastine, but neither helped with my nasal issues or breathing. An allergy test also came back negative.
Physical Therapy and Pain Management Clinic
Currently, I continue working with physical therapy, focusing on neck exercises, light massage, and vestibular work. I’ve noticed about a 5% improvement, which, while small, I try to take any wins.
At the pain management clinic, I received an occipital nerve block as a diagnostic tool, and to help with the skull base pressure and electric sensations in the back of my head, but it didn’t significantly improve my symptoms. I also underwent a blind blood patch for a suspected CSF leak, which didn't bring any relief, and increased head pressure for about two weeks before returning to baseline.
Alternative Medicine
Chiropractic
Out of desperation and the lack of progress with conventional medicine, I turned to alternative methods to search for both answers and treatments. I was particularly interested in cervical instability and the wide range of symptoms it can cause. I suspected that craniocervical instability might be at the root of my issues.
I consulted two chiropractors specializing in upper cervical techniques that didn’t involve aggressive manual manipulation, which I wanted to avoid. One used the NUCCA approach, and the other used atlas orthogonal techniques. Upright imaging, including extension and flexion views, showed no signs of instability. The only finding was a straightened neck with a loss of the natural cervical curve. After trying a six-week treatment plan with both chiropractors, I didn’t experience any relief.
Functional Medicine
After a disappointing experience with an alternative medicine clinic in 2020, I sought out a different naturopathic doctor. I felt desperate for a new approach to my unexplained symptoms, and I was hopeful this doctor could offer some insight.
Functional medicine clinics are known for spending more time with patients, listening to their symptoms, and helping those who are at the end of the road, like me. I was interested in finding the root cause of my unexplained symptoms. I was feeling hopeful again. The doctor I found specialized in chronic gut issues and ordered basic bloodwork, a comprehensive stool test, and a mycotoxin urine test to check for mold toxicity.
My bloodwork revealed a mildly elevated neutrophil-to-lymphocyte ratio, slightly elevated monocytes, and high cholesterol. The stool test showed some maldigestion and fecal fat biomarkers, but nothing alarming. The mycotoxin test, however, came back abnormal for the Trichothecene group.
My treatment plan consisted of two phases. The first phase involved supplements to address the mycotoxin results, while the second phase focused on supporting my digestion through supplementation and a low-histamine diet. While I’m still working with this doctor, I haven’t seen a significant improvement in my symptoms yet.
What’s Next?
As of now, I am still unable to work and struggling to make progress in both finding answers and getting symptom relief. I continue to work with my functional medicine doctor, seeking ways to manage my gut issues. Physical therapy is also ongoing, as I slowly rebuild the strength in my neck muscles, which have weakened over the past six months. Lastly, I'm doing daily nervous system regulation exercises.
I’ve slowed down appointments with my medical doctors since they seem unsure of what’s wrong. However, I do have autonomic testing scheduled in a few months, and I’m also working with a CSF leak clinic for further testing in the near future.
This brings me to the end of Chapter 3, updating you on my current condition. Chapter 4 will be released once I have a major breakthrough—either in finding answers or achieving significant relief. I’m holding onto hope that day will come.
Throughout the rest of this blog, I’ll continue to share What I’ve Tried, ways I’m keeping Hope alive while living with chronic illness, and for when I need to vent, Talking Out Loud is the place to be.
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You have a gift of writing and I love how you explain each stage. I'm believing you will be healed of this and praying for a break through. Love you son
Keep up the good fight, Kaleb! You’ll beat these health issues.