My name is Ashley, I'm 30 years old, and I live with chronic illness. My diagnoses are POTS (Postural Orthostatic Tachycardia Syndrome), mast cell activation disorder, autonomic neuropathy, autoimmune disease, chronic migraines, daily headaches, and a few other things.
I love to paint, sing and dance whenever possible. When health allows, I love to travel to new places, camp in National Parks with my hubby, hang out with friends and family, and hike in cool nature spots.
My husband and I recently released our documentary Behind the Visible about living with POTS to help raise awareness about the condition. To watch the film, click the link below.
I was officially diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) the Friday before Memorial Day weekend in 2017 via the Tilt Table Test, but have been dealing with some of the symptoms since I was a kid. POTS is a form of Dysautonomia or autonomic dysfunction. The autonomic nervous system controls our "automatic functions" that we don't think about like heart rate, blood pressure, sweating, and bowel motility. POTS specifically is a condition where there's an abnormal increase in heart rate upon standing. Blood pools to the lower half of the body more than usual and causes all sorts of symptoms. POTS is typically diagnosed by a Tilt Table Test where the doctor will monitor what your heart rate and blood pressure are doing as you are brought to a standing position.
POTS symptoms may include but are not limited to things like syncope (fainting), near syncope, dizziness, lightheadedness, orthostatic intolerance, blood pooling, chest pain and shortness of breath, nausea, exercise intolerance, inability to regulate body temperature, shaking, lack of concentration, heart palpitations, brain fog, and the laundry list goes on.
Prior to my POTS Diagnosis
I’d grown up getting sick a lot, everything from scarlet fever (throwback to pioneer times) to reflex sympathetic dystrophy (a nerve disorder that started one day in my left foot while I was in the fourth grade) to catching a rare strain of E. coli from a mission trip in Nicaragua and the usual bouts of the flu, colds, and yearly sinus infections. My Junior year of high school, I accidentally consumed a little of the local water in Mexico, which turned into three years of excruciating stomach issues and lactose intolerance. I also suffered from four concussions throughout my teenage and young adult years, which I believe contributed to my ongoing issues with migraines and potentially my onset of POTS symptoms.
Fast forward to college. I went from fainting once a semester to once a month to once a week at its worst without much warning. I would get no more than a three second window to alert someone I was about to faint when an episode was happening. I became a frequent flyer at the ER for fainting or unexplained weakness, suffered from frequent migraines, and wore a holter monitor for a month. Doctors ran many EKGs (all normal) and they could not figure out what was happening to me. I was told to salt my foods, drink more water, wear compression stockings and perform weight bearing exercises. This alone did not do the trick.
I couldn’t function and had no choice but to take a semester-long medical leave from school to figure out what was going on. Finally, my cardiologist ordered a Tilt Table Test (my first one), to confirm these fainting episodes in order to prescribe me medicine. I passed it with flying colors and he then put me on midodrine. Roughly every 6-10 months, I would "outgrow" the current dosage and we'd have to increase it. Midodrine and I had five good years together where most of my symptoms were managed and the fainting was fairly controlled. In 2014, I was working out every day and even ran 3 half marathons. Not without struggle of course, but it amazes me to this day that I was able to do that.
Over the next few years, I became to get more migraines again at greater frequency and then, in early 2017, my friend midodrine stopped working for me completely and I developed some new symptoms.
Fast forward to now, I've tried a bunch of different medications to prevent my fainting episodes, regulate my heart rate and blood pressure, and manage the other debilitating symptoms. I've had bad reactions to several of these medications because my body is hypersensitive to a lot of meds. I still haven't found my perfect combination, but I'm working with my doctors to get to that point. Exercise has been extremely difficult for me over the last couple of years due to POTS symptoms, which is a new adjustment for me and very annoying. I do what I can and try not to overdue.
Day to day, I deal with headaches or migraines, head rush and lightheadedness when getting up, standing intolerance, fatigue after doing even basic tasks, blood pooling, trouble regulating my body temperature, near syncopal episodes, digestion issues, and more. Every day is different in terms of how many symptoms I experience, how severe they are and how much energy I have for the day (aka how many spoons I have). Stay tuned for upcoming posts to understand some of this better!
While POTS does not have a cure, it can be managed in some patients with a mix pharmacotherapy, exercise, increased water intake or IV fluids, and a salty diet. It's good to keep in mind that every person's body is different and responds to medications and other therapies differently. It's important to work with your doctors on any changes in diet, medications, and exercise regimens.
I'm hopeful that in years to come, we'll have a better handle on what POTS is and what causes it, we'll have more doctors who specialize in autonomic disorders, we'll get patients diagnosed quicker, and we'll have some better treatment options. It all takes time and research. Please consider donating to the POTS research fund through Dysautonomia International via CurePOTS.org.