Imagine experiencing debilitating symptoms every day.
Imagine not knowing how you are going to feel when you wake up the next day, or which symptom will be most apparent.
Imagine not knowing the cause of these symptoms, and not knowing when these symptoms will go away.
Imagine making plans and never knowing if you will actually feel okay enough to follow through.
Perhaps you do understand, and if you are reading this and you are whispering to yourself, "I know...," I want to say I am so sorry you have struggled or are currently struggling with chronic health issues. I hear you. I understand, and I am here for you.
In 2019, I began experiencing some very strange and horrifying symptoms. My symptoms began as vertigo and extreme dizziness. These symptoms would come on suddenly and randomly. I would need to immediately sit down or hold onto someone or something. I immediately brought this to my doctor's attention.
I saw several ENT's (ear, nose, and throat doctors). They found nothing wrong, and associated these symptoms with anxiety. I thought that made total sense and I practiced grounding myself in those moments of dizziness. I learned tapping, grounding, breathing techniques. Sure, it calmed my anxiety, but nothing helped me feel better in those moments.
As time went on, I began experiencing other associated symptoms, such as difficulty walking, heart racing, fainting spells, vision changes, joint pain, heat intolerance, chronic fatigue, migraines, nausea, gut issues, anxiety, insomnia, and more. These symptoms just worsened over time. I was in more and more pain, chronically fatigued, and I completely lost my independence to do anything or go anywhere on my own. I lost my ability to drive and walk on my own, because I never knew when I would have a pre-fainting spell, blurry vision, or when I would need support.
These symptoms persisted and significantly impacted my day to day functioning. I couldn’t stand up straight for more than one minute without feeling like I was going to pass out. Standing in lines was impossible. Walking from my apartment to my car was impossible. Walking for 5 minutes outside became utterly impossible. I found myself having to crawl on the ground, squat, kneel, lie down, whatever I needed to do to prevent a fainting episode. If that wasn’t confusing enough, I got extremely dizzy from staying seated for too long.
I distinctly remember being out to dinner with my friend and losing my vision, getting extremely clammy, and feeling nauseous. I told her “I’m going to pass out.” She helped to get me inside and hydrated, and I finally felt better. Everyday came with different challenges. I even missed my flight because I couldn’t walk through security and to my gate without support. Each day, I never knew if I was going to have a “good” health day, or a “bad” health day. I wanted to be able to trust and feel safe in my own body. I felt so alone.
How did I go from being completely healthy all my life to not being able to take a shower without holding onto something? Of course I was terrified.
So I began the search for answers...
I went back to the ear, nose & throat doctor. I thought, “dizziness must mean that I have an inner ear issue.” After his exam, he concluded that this was not an inner ear issue.
I met with a cardiologist. I wore a heart monitor for an entire week (it was very annoying because you can’t get it wet) and had an EKG completed (very non-invasive). All clear. My heart is completely healthy.
Next stop was the neurologist. I was so scared and sure something was going to come back from these tests. I had electrodes placed on my head. I had to go into an MRI machine, which was terrifying (I’m very claustrophobic). Nothing remarkable showed up.
I even went to an ophthalmologist to see if my dizziness was being caused by my eyes. This doctor spent maybe 5 minutes with me and looked at me like I had 5 heads.
I even had a general doctor laugh at me and tell me to "stop watching scary movies." (wtf!?)
I went to many other doctors along the way. Too many to name. This was over the course of two years. Some doctors spent 5 minutes with me and concluded that my symptoms weren’t real. Some doctors spent 5 minutes with me and prescribed me medication that was completely counterintuitive. When I did try the medications prescribed to me, it made my symptoms so much worse.
I was thankful nothing came up on these tests, but I was still so completely confused as to why I was experiencing these widespread symptoms...
After getting the results, the doctors concluded that this was all psychological and referred me to a therapist.
By the way, I was already seeing a therapist because my mental health is such a priority for me.
I have a very deep understanding of how mental health, emotional health, physical health, and spiritual health are all intimately connected. It's like, what I read about and study all the time. It's kind of my life's work. Anyway, I knew that anxiety was a symptom of a much more widespread imbalance, not the sole cause.
Now, I could have been a 'walking pharmacy' if I wanted to be. I was prescribed every medication from migraine medication, anxiety medication, reflux medication, antidepressants, over the counter medications, and more. However, I knew that these medications would only be a “bandaid” fix and that I was determined to get to the root cause.
My doctors assured me that all of my random symptoms were not connected and that there was no known cause.
I was searching for so long that I thought I was going to end up in a wheelchair. I thought that there was no answer here.
But then something within me shifted.
I had this inner knowing that not only were all of my symptoms connected, but that the cells in my body communicate with each other. I found myself always saying “What, are my organs just floating in space? Do they not communicate with each other? Is my central nervous system not a thing? Are my brain and my gut NOT best friends? I thought they were!”
I refused to give up on my search for answers. I just knew that I did not have to live with these symptoms and that I had the capability to fully heal.
I didn’t feel heard in the medical space. I knew I had to continue to SPEAK UP.
I kept telling my story, hoping that someone would listen.
I begged doctors to listen.
Trust me, I had many days where I just wanted to give up… but I soon picked myself up and began my research. I knew I had to become an expert in my own body.
I started saying “no” to suggestions from doctors that didn’t feel right ‘in my gut’ (pun intended) and offering my own opinions about what I was experiencing and what my body needed. Please, don’t let anyone tell you what your body needs. Only you can know that.
I gathered up all of my blood work and tests and kept moving forward.
I started working with a holistic dietician, who saved my life. I also added a holistic functional medicine doctor to my team of detectives. Between the tests they ordered, information began showing up!
The following began to show in my blood work:
Ah… so this isn’t just all in my head!!!
Dr. Rob diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS), a chronic condition affecting the autonomic and sympathetic nervous system, and affects circulation (blood flow). The primary symptoms are lightheadedness, fainting, and rapid heartbeat. This condition can also cause widespread inflammation throughout the entire body. These symptoms can occur at any moment. However, they most often occur upon standing or (for me), walking for more than a couple of minutes. Not allowing the blood flow to circulate throughout the body was causing me extreme dizziness (e.g., being at my computer all day, not giving my body enough opportunities to walk outside). I became deconditioned to everyday tasks such as walking, driving, or being in a busy environment.
My dietician also noticed that my tongue was showing signs of a gut imbalance. Why had no other medical professional pointed this out to me?
I began a gut healing protocol.
I did a food sensitivity test and found out that much of what I was eating was causing inflammation in my body. I had some of the highest levels of antibodies to gluten that she had ever seen. I said goodbye to gluten forever.
Starting a gluten free and anti-inflammatory diet produced extraordinary results. My joint pain was completely gone almost overnight. I began to feel more energized. My migraines disappeared. My symptoms of acid reflux were about 90% gone within a week. Slowly, very slowly, I started to feel strong enough to go for short walks outside. And with the weather cooling down, I was able to enjoy the sunshine, which helped with my sleep-wake cycles and gave me a nice Vitamin D boost… and some nice blonde natural highlights :)
I started taking a few supplements which further supported my healing.
I still very much have a long way to go to get completely back to myself. I am still walking with the support of a cane. I still have significant difficulty in noisy, busy, visually complex environments where my central nervous system gets overwhelmed. However, I am starting to feel alive again.
I also began physical therapy, which helped “recondition” me a bit back to everyday tasks. My physical therapist is amazing as well.
I named my cane Stella, and she is very sassy.
Pictured here, me and Stella :)
I am beginning to learn tools to help me everyday.
Some days are harder than others.
Some days I am actually completely symptom free!
This condition can be chronic and lifelong. However, I am going to get to the ‘root’ of it, and begin by healing my gut and allowing my mind and body to restore. And I will go from there.
I am only at the beginning of a long health journey, but I KNOW that my mind, body, and spirit have the capability to fully heal. And I will.
This experience has informed my life, career, mission, and purpose. I am now a student at the Institute for Integrative Nutrition™ to feed my hunger for understanding whole person health and help others say “YES” to feeling alive, from the inside out.
I connected this challenge to my mission. Live Vocally is a space where those who have been silenced can find their voice again through post-traumatic growth. Locking our voices away is a safety mechanism. Having a voice that doesn't align with our authentic self is a traumatic experience. Not knowing where to find that voice or what that voice will sound like is frightening. We are silenced and we are afraid to speak our inner knowing, our inner truth.
I hear you, and I know that it is not easy to make yourself heard.
Shine on, and always remember to listen to your gut.
My team of superheroes:
Sheri Weitz, RDN, CDE
Move to Wellness
The Team at MD Integrative Wellness
Dr. Maddie Burke
Elevated Physical Therapy
And of course my amazing support system, family and friends who stuck with me throughout this journey. Thank you, thank you, thank you for allowing me to feel.