July is Chronic Illness Awareness Month. As such I wanted to share a little bit regarding my journey towards a diagnosis of POTS. This has been a diagnosis that I have kept a lot closer to my chest because there is a lot of misinformation shared about POTS and a lot of people who refer to this as a trendy or TikTok diagnosis. I want to start by saying that although there may be some people who self-diagnose or malingerers out there, there are plenty of people who get this label through the appropriate channels. In addition, there is nothing trendy or exciting about having POTS. It can be an incredibly disabling condition and a chronic one that can make you feel absolutely terrible.
What is POTS?
POTS is an acronym for Postural Orthostatic Tachycardia Syndrome. This is a chronic condition that is marked by substantial change in heart rate that comes with position change. Everyone experiences changes in heart rate with motion and going from sitting to standing, but POTS patients experience substantial changes (typically 30 bpm or more). This is also accompanied by an array of symptoms. The most common symptoms include fainting, pre-syncope, dizziness, fatigue, and rapid heart rate. You may also experience a wide array of symptoms from feeling temperature changes within the body to chest pain to air hunger and even visual distortions. Triggers for symptoms come from heat, overexertion, lack of sleep, stress, eating or lack of eating, dehydration, lack of salt, menstrual cycles/hormonal changes, weather changes, or for other unknown reasons.
My Diagnosis Journey
For many patients, POTS takes quite a while to get diagnosed with. It took me approximately 2 years to get my diagnosis, but it came easier than it has for many others. My journey began when I suffered a concussion at the end of May of 2023 (it is believed that the initial trigger for my condition to begin was this concussion). I faced very severe symptoms of dizziness, visual distortions, and fatigue in the weeks after my concussion was diagnosed. My doctor believed I had post concussive syndrome and diagnosed me as such. These symptoms persisted after the amount of time that post concussive syndrome is known to last. In addition, in this timeframe I also was diagnosed by GI Motility with Gastroparesis (confirmed by gastric emptying test).
My doctor began to think that my symptoms were due to malnutrition. I began questioning others with Gastroparesis during support group and they all asked me if I had POTS. It is known that POTS co-occurs with Gastroparesis in some cases. I talked with my GI Motility Doctor who referred me to my PCP for this. My PCP performed in office testing and told me that she was comfortable diagnosing me , but that she wanted me to also be evaluated by Cardiology and potentially be evaluated by the tilt-table test. I then followed up with Cardiology who then diagnosed me with POTS.
Chronic Illness Diagnosis
It is often a long process to get diagnosed with a chronic illness. There are often a lot of misdiagnoses along the way. As well we often get passed from doctor to doctor because they are not sure what is happening. There can also be a lot of medical gaslighting that happens when certain tests do not immediately reveal what the problem is. It can be hard to keep going and fighting in the midst of medical adversity. But it is important to keep trying. Even if the diagnosis doesn’t lead to helpful treatment. It can at least give you a reason why you feel a specific way. It also can allow insurance to approve more testing or treatment options that you may not have had before. Diagnosis also allows you to find community of people who understand what you are going through.
So keep breathing, keep trying, and keep fighting! You got this!
