Behind The Scenes: Lifelong Trial and Error with Complex Chronic Illnesses

Blue and purple frame with “behind the scenes medical trial and error: unknown and overlapping conditions”

Trial and error can often create an impasse when we’re faced with trying to address multiple conditions at once.

Today, I want to introduce Emily Natani and her over a decade long journey with vestibular migraine, dysautonomia, and POTS, further complicated by chronic bacterial infections and a weakened immune system that left even the most experienced physicians stumped. Emily’s story is highlighted to show the much broader and often life long experience of trying to find answers and manage multiple chronic and complex conditions. This puts trial and error on display when doctors rely on it to solve issues they don’t fully understand and often exacerbate multiple conditions while we are treated as test subjects. These doctors try and then fail, and pass us along, often never knowing what becomes of their brief encounters.

To follow along with Emily’s journey, you can find her over on Instagram @emilynatani3

Emily’s story begins twelve years ago when she became pregnant with her first child. She began experiencing dizziness, disequilibrium, lightheadedness and pre-syncope episodes where she would feel as if she was falling down an elevator shaft or on a rocking boat. This experience was terrifying, and post-partum the symptoms increased dramatically to the point where they were often debilitating. Emily worked to manage these new symptoms while struggling to care for her newborn. After several years, Emily would receive a handful of diagnoses including: vestibular migraine, dysautonomia, autonomic dysfunction, ME/CFS, POTS, and fibromyalgia in an attempt to piece together her medical conundrum.

“My dizziness, disequilibrium and strange vestibular sensations, such as a zing to the back of my head, numbness occurs and then I feel like my whole body has been wracked. I have blacked out, fallen many times, and when I take steps, my feet feel like they are falling into the ground and someone is almost pushing me in different directions. Sometimes these are episodic and other times they are constant and never ending, but every second of every day I am highly symptomatic.”

The trial and error process to manage these host of conditions began as Emily tried a well-rounded approach by seeing many doctors including endocrinologists, cardiologists, nephrologists, and eventually neurologists while also working alongside around forty naturopaths, integrative and holistic doctors. She tried acupuncture, herbs, supplements, various POTS aids including salt tablets, compressions stockings, and electrolytes along with various diets limiting sugar, dairy and gluten. All to no avail.

During this process, she worked with a TMJ specialist as well in hopes treating her TMJ would reduce dizziness. It did not. Eventually in seeing a Neurologist she tried dry needling which sent her symptoms spiraling.

“I blacked out, peed myself, lost all functionality and was beyond the level of dizziness I ever thought I could experience. My husband took off work, I had a newborn and a four year old, and needed to be bathed, [and] could barely wash my face.”

This increase in symptoms led Emily down a rabbit hole of trial and error with medications. Some failed right away, others worked a bit more in combination with vitamins like Coq10, Magnesium and Zinc, allowing her to walk a bit more. As time went on, she would ween off some of the medications, while increasing others.

However, all of this was happening concurrently with an even larger battle with Emily’s immune system.

Emily describes her mucosal cough as her second worse symptom, which can make her dizziness attacks worse.

“I cough up dark green mucus balls violently for several hours daily. My nose is always stuffed up and I can never release all the bacteria that needs to come out.”

While trying to get her vestibular condition treated, she sought out care to solve her chronic cough. This started with an allergist who assumed that she was suffering from environmental allergies. She went through nasal sprays, Zyrtec, and every antihistamine before trying immunotherapy for two years. This was discontinued as it had no real result.

Her next stop was to see an ENT, fifteen to be precise, all prescribing a variety of medications, recognized there was a problem but couldn’t find a solution. She was sent to an otolaryngologist (a specialized surgeon within the ENT field) who did PH monitoring, manometry tests, endoscopies and invasive procedures. This doctor believed the cause of the cough was reflux and a subsequent gaping hole in Emily’s stomach which could be managed by an anti-reflux diet, reflux medications, and Amitriptyline. All of these medications and lifestyle changes caused tremendous amounts of side effects that required even more medication to counteract it. Emily was doubtful that reflux was the cause, but followed this specialists advice to have a Stretta surgery since her current treatment was failing.

Not only did the surgery fail causing her cough and vestibular issues to worsen, Emily was informed that the surgeon caused permanent damage to her vagal nerve, requiring even more medications.  

Emily recalls being “shocked and too angry to speak” and would choose to pursue a new route, where she would go on to see a Pulmonologist. The new working theory was that her mucosal cough was an infection. For two years she would be on and off steroids and various antibiotics. Tests only showed slight mucosal thickening, despite the worsening cough that caused her to break her ribs several times and often have bruising so severe she had to wear a brace.

She was tossed to a functional neurologist who attempted to rewire her brain and how it sends signals to her body. This doctor failed to recognize that Emily’s entire body needed to be addressed, and her overlapping conditions could not be solved by his one size fits all protocol he relied on.

After becoming aware of a black mold exposure, Emily sought care from infectious disease doctors. She worked with a pioneer in the field, where they started a treatment plan of Amphoteracin, Itraconozale, and vitamins. The presence of mycotoxins in her bloodstream and urine, plus having the MTHFR gene meant that she needed a more aggressive detox plan. After a year of treatment, she was once again released and left to find help elsewhere.

Chronic illness doctors were her next stop. She saw two that were meant to be experts in complex medical cases like hers. They found active viruses, fungal and bacterial infections, scarring in her lungs, and pleurisy (an inflammation of lung tissue) and decided to follow a treatment plan for ME/CFS. They also found pseudomonas (a bacteria that can be deadly) which had likely been brought on by her second pregnancy and wanted to further investigate Emily’s immune system. Emily’s previous reaction to a flu vaccine hadn’t produced enough antibodies so they pushed for her to see an immunologist as quickly as possible.

The immunologist decided that infusions of ceftazidime for three weeks would be the best course of action. Emily describes her experience here:

“They inserted the midline with no numbing agent into my veins and the medicine was so strong, it was destroying my immune system, which then led to weakening my body, and increasing my vestibular issues. I became so fatigued, my eyes were rolling in the back of my head and I had to increase my neurological medications because the side effects were too difficult to bear. I almost passed out again at the follow up appointment and the doctor ripped out the midline, muttering that he shouldn’t have done this to someone with such a weakened immune system and in such a fragile state.”

After further testing, the presence of pseudomonas had only increased and Emily was sent to Mount Sinai to see more infectious disease doctors, immunologists and top specialists who were all stumped by her case.

Emily believes that maybe in fifty or one hundred years, doctors may have a grasp on what is going on in her body, but now it’s simply a mystery. She considered see more world-renowned doctors at the Mayo Clinic and John Hopkins multiple times, but at this point Emily was tired of the poking and prodding and didn’t want to exist as a research subject with no promise of relief.

So much of Emily’s experience was doctor’s hoping she’d magically respond to a treatment, the treatment failing or making everything else worse – sometimes both, and then being shipped off to a new doctor with a new area of expertise.

Of course, Emily’s life didn’t exist in a vacuum of doctor’s offices, as she was also trying to raise her two children and maintain the home while her husband often traveled for work. Over more than a decade, this has impacted her mental health.

“After the first few years and diagnoses, then misdiagnoses, medications, then weaning off the medications, I began to be more anxious and concerned that I could not live like this. How could my kids continue to see my health journey be a failure? They pray to G-d to have their prayers answered for me to be healthy and tell me he doesn’t listen to them. The pressure is enormous. My family wants to live, to travel, to have a life, and I have been disabled essentially, and had my life taken from me. I feel as if I am destroying theirs. I never know how I am going to feel, hour to hour even, and have to cancel plans, outings, play dates, the works. It comes on and I have to rush out of holidays with my kids because I am about to go down. Its embarrassing, mortifying and unacceptable. My physical ailments bled into my mental state.”

For now, Emily is continuing to raise her children and manage her symptoms every day. Some days, she feels as if she can’t continue because her dizziness, vertigo, pain, and cough is severe so she decides to rest. But as she describes, rest doesn’t come easy as she tends to push herself until she crashes, until her body stops working and she falls. And then days follow where the whole world is spinning, dysautonomia and POTS are flaring. She finds herself wobbly, heart racing uncontrollably and she barely can change positions on the couch. Often straining and coughing up bloody mucus. On days when she is managing the cooking and cleaning, writing, helping her husband, and all the daily ongoings she wishes she could comfortably enjoy, she admits that she’s faking it and pushing through.

To Emily, her health has never really been the priority. She describes herself as a recovering perfectionist and even eleven years into her journey, she still finds herself putting on a show, performing wellness for the sake of those around her. The health of her kids often comes first too. She has put her own crisis on hold as her children suffer from complex health issues of their own, and as a parent she finds that their health is her top priority.

Emily’s story is one I know many of you can relate to. Whether it be because you’re a parent, or because you too have been on a fruitless journey for your own chronic conditions, her experiences echo what we live with and how the complexities of our conditions are often too much for our existing medical infrastructure to handle.

And so we become the next pin cushion in the ever revolving door, hoping we might just be the final pin to solving much larger puzzles and answers not yet discovered in our scientific community.

In the next behind the scenes piece of this series, you’ll find a similarly complex story as one young lady sought to manage her care on her own, away from the trials and tribulations of doctor imposed trail and error.

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