I endured over a year of medical testing and procedures to reach any sort of diagnosis for my dizzy spells. The official word is Neurocardiogenic Syncope with unknown cause as well as a treatment-resistant form of iron deficiency anemia.
Neurocardiogenic Syncope is basically a condition that causes random spikes in heart rate. My body does not regulate this well, so my blood pressure will overcompensate and drop dramatically. The result is a near-fainting episode, or actual fainting if I push it too far. I have a list of things that can trigger these spells, including heat, stress, exercise, pain, and about 15 other things. In many people, this condition can be related to neurological issues (Brain) or cardiological issues (Heart). Being nearly fully cleared from both, it is possible that I fall in secret category 3 and have a problem in my autonomic system, which is not yet fully diagnosable with our current knowledge.
Treatment-Resistant Iron Deficiency just means that I don’t absorb iron from food, and standard treatments like iron supplements don’t work. This is likely related to issues in my Gastrointestinal tract (GI Track…Tummy).
Testing and Treatment
The testing for my diagnosis was incredibly invasive. I had a team of four different doctors in different specialties, Cardiologist (heart), Hematologist (Blood), Neurologist (brain), and gastroenterologist (tummy). All with a different set of tests to run. Over 9 months, I had over 30 various appointments, tests, and treatments, including:
- Multiple EEGs
- Bloodwork multiple times
- Tilt table test
- Endoscopy and colonoscopy
- 30-day heart monitor
- Iron infusions
- And more
Many of these tests and treatments were painful, involved uncomfortable prep, or caused sickness after. Before COVID hit, I had one test remaining. An at-home EEG to rule out any epileptic conditions.
Trauma and Medical Testing and Treatments
This would be a lot for anyone to handle. But for someone with Complex Posttraumatic Stress Disorder and anxiety, there is a whole new set of hurdles to jump. Some of my testings would involve being help down, enclosed in small spaces, or require tubes to go down my throat. I won’t go into the ways these could be triggering. So let’s just say I have valid reasons for these things to be potentially triggering. Of my doctors, only one was knowledgeable about trauma and recognized the triggering effect this could have without being told.
Let that sink in for a moment. This means that if I didn’t know about trauma and the triggers, then three out of my four doctors would have put me through tests without knowing the mental health damage it could cause. It was only because of my own advocacy that I could make proper preparations to avoid distress. I can never trust that a doctor will understand enough about my disorder to mitigate the distress. So far, I have always been the one seeking the treatment knowingly. But it terrifies me to think of any emergency I could face where I am not capable of being an active participant in my treatment.
We Have to Do Better
This is the truth all trauma survivors face when seeking medical testing and treatment. For those who don’t understand their condition enough to advocate, it is sometimes easier to just avoid any treatment. Through this avoidance, these individuals are at risk of letting conditions progress to a dangerous point. They would rather suffer than be subjected to conditions that could aggravate their trauma. This won’t make sense to those without trauma-related disorders. How could it be that bad? A PTSD flashback causes the same distress as experiencing the trauma that caused it. This is more than stress or nerves. It can be a whole-body reaction that can create an emotional spiral.
The code of a Doctor is to do no harm. Yet, for trauma patients, they may be unprepared for how to do that. This is not the fault of the doctors; most are willing to learn. Every one of my doctors was more than willing to listen and adjust to my needs. This is the symptom of a system that ignores mental health and a field where trauma is still not understood. This needs to change. The only way for this to happen is to raise awareness of mental health and make it a relevant thing to understand in all professions that rely on human support. From teachers to doctors, mental health education is important.