After two years of frustrating symptoms, I finally had an answer. That answer came with conflicting emotions battling in my mind. Any given day had a different winner.
A short time following cardiac arrest, I started to experience symptoms that became more frequent, and more defined. What I mean is that I didn’t just have a general sense of not feeling well. I felt dizziness every day that, at times, the severity had me reaching for the nearest wall or chair for balance.
My level of fatigue was—and still is—severe. Since it was only a few months after cardiac arrest, my cardiologist assured me this wasn’t uncommon. No matter what I said or how I explained the severity of my symptoms, his answer was always the same: “Cardiac arrest is traumatic. Not just emotionally, but to your entire body. It will take time for your body to recover.”
To be fair, a specialized cardiologist is concerned with your heart and all things related. It doesn’t mean he or she isn’t concerned with your other conditions. It would be unethical and bad medicine for a cardiologist to attempt a neurological diagnosis. More commonly, a cardiologist may share his opinion but would refer you to a neurologist. Plus, I’ve learned that symptoms like fatigue and dizziness can be caused from dozens, maybe hundreds, of factors.
More than a year later, there was no improvement or recovery in sight. Dizziness is a well-documented symptom post-cardiac arrest. I didn’t know that back then. It’s caused from anoxia or hypoxia, which is lack of oxygen to the brain. However, my mix of symptoms went undiagnosed for close to two years.
Two Long Years
Two years later, I finally had an answer, but that answer meant I had another medical condition. There is both relief and grief when you get a medical diagnosis.
I don’t read much news for many reasons. One of them is that I need to choose where I put my mental energy, and news is too draining. However, one day I was skimming news and saw a headline that read: You look fine. Your doctor is stumped. But this disorder is leaving millions 'a hot mess.’
I had been frustrated with symptoms and had no improvement for nearly two years. Those symptoms were exactly what the article discussed. If I ever felt validated, it was then. One of the neurologists quoted in the article eventually became my neurologist, and for that I’m very grateful.
After several tests, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). Cleveland Clinic explains that “POTS… causes a number of symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness and fatigue.”
Two years later, I finally had an answer, but that answer meant I had another medical condition. There is both relief and grief when you get a medical diagnosis. I felt relief because there was an explanation for my symptoms, and I could learn to manage them—and maybe feel better. I felt grief because that meant having yet another medical condition to manage that will likely never go away. That impacts my quality of life. Like many neurological disorders, there isn’t necessarily a cure, but there are ways to manage symptoms. The conflicting emotions can feel like a huge battle in your mind: validated, disappointed, relieved, hopeful, frustrated, angry, hopeful again. That inner battle can feel exhausting, as if there is only one correct emotion.
There is no correct feeling, although some are healthier and more beneficial than others. I’ve learned that I had to work through—struggle through—that range of emotions. That process of struggle allowed me to come to a place where, after a diagnosis, I could feel thankful and hopeful. That doesn’t happen in an instant.
Challenges like these feel like pushing a large rock up an icy hill. Sometimes it feels like a losing battle. No one in their right mind wants to be diagnosed with a medical condition. Yet, it feels relieving to get that diagnosis. It validates you. You’re not imagining symptoms. You’re not crazy.
I’m thankful for my doctor who put me on the right path, and educated me on how to manage my symptoms. If there is anything I’ve learned it’s that good healthcare isn’t only based on having a good doctor. Part of good healthcare depends on you, the patient. Good doctors are key, but it’s up to you to ask questions, communicate honestly with your doctor, and do the work they tell you to do. Equally important is having the attitude where you do not give up.
Managing symptoms is my responsibility. To reduce POTS symptoms, I’m on a high sodium diet. I need to stand up slowly if I’ve been sitting for a while to be sure I’m steady.
Annoying? Yes. Empowering? Also yes.
The average time it takes to get an accurate diagnosis of POTS is seven years. I’m thankful my time was about two years. Whatever you’re facing, don’t give up, and do what you can to move forward, even if you take small steps as you have the energy.
It can feel like the answer is out there somewhere, far from you. You might find that part of the answer is within you: your own drive to overcome.
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