Marigold

Hi there. I realize this is an older post but since it was the first link that came up on my Google search for "POTS and Pregnancy," I wanted to add my experience in case this page comes up for others who are searching for similar answers. I want to give a message of hope and a cautionary tale. I first became pregnant in my late twenties (12 years ago) long before dysautonomia was understood as it is today. That said, I had already suffered symptoms for many years: classic migraines (with aura), hypotension (80/50), arrhythmia, sleep disruption, edema, chronic dehydration, and a nearly entire absence of sweating, despite being a serious student-athlete. (For example, during long runs in August heat for HS X-country practice, I still did not sweat.) First, I would say that pregnancy with dysautonomia was a nightmare: severe weight loss, vomiting multiple times a day for seven months, and constant overwhelming fatigue. I basically slept for the entire pregnancy. I also lost 30 lbs. (When I conceived, I weighed 183 lbs. I tracked my weight diligently during pregnancy and weighed 175 at full term. When I left the hospital after giving birth, I weighed 153 lbs.) I was diagnosed with hyperemesis gravidarum and was treated pharmaceutically and with IV fluids as needed. Zofran was a true miracle for me. I used it in very small increments just to get me through mandatory meetings w/o running to the bathroom to throw up. However, the entire experience absolutely derailed my professional career. I was a Ph.D. student at the time. I spent my fellowship year in bed, which delayed my graduation by many years. I also lost my professional self-confidence. Again, this was before mainstream medicine had an idea of POTS. I believe I would have felt very differently had I known then what I know now. That said, my pregnancy and birth were otherwise extremely healthy. Second, I would add that dysautonomia did seem to not impact the health of my child at all. Despite my horrible symptoms, I gave birth to a full-term 21-inch long 10 lb. healthy baby girl. She is now a brilliant almost-eleven-year-old: empathetic, outgoing, athletic, musically talented, and attending a private school for gifted children on a scholarship. My experience caused me to choose to not get pregnant again. That is a personal choice based on my circumstances (namely, my inability to stay in bed for 9 months). I understand that others may view this as unacceptable. But I do want to communicate that there is hope and despite the suffering, you can have a fabulously healthy child. I still have symptoms, which I treat with diet and exercise and sleep hygiene. I now get botox for my migraines (which is very effective) and I take modafinil for idiopathic hypersomnia (also very effective). Taking those steps (which involved time-consuming diagnosis and great medical specialists who advocated for my insurance to cover my expensive medical interventions) has helped me regain my professional momentum. It has also allowed me to make great strides in identifying underlying medical conditions, like POTS. A long process, but worth it. For those who already are diagnosed with dysautonomia and planning for pregnancy, remember, be encouraged that you have the benefit of starting out with much more knowledge, resources, and self-awareness. It takes courage, patience, and good healthcare, but you already know that