Sarah

My name is Sarah. I am 32 years old, and was diagnosed with PoTS at 30 years old. About 3 months after having a covid infection, I became very sick almost overnight.

I was misdiagnosed with multiple things before a cardiologist accurately diagnosed me. This diagnosis came about 6 months after my initial symptoms began. PoTS has deeply affected my life and changed my future in ways I never imagined. I have had to stop working my dream career, and have also learned I have Ehlers-Danlos Syndrome, and Mast Cell Activation Syndrome coexisting with Dysautonomia. Managing three different conditions that interact with one another is extremely challenging!

I’m a mom to a six year old and our days look very different than they were prior to being diagnosed. The biggest challenge for me is the relentless symptoms of all three conditions. The joint pain, joint subluxations, dislocations, severe fatigue, migraines, craniocervical instability, tachycardia, fainting, blood pressure swings, and near constant GI motility issues like gastroparesis, skin rashes and cognitive issues are hard to manage all at once. I never know what my body is going to do or feel. It is unpredictable in nature. Trying to lead a normal life has been hard. Being that dysautonomia can be multisystemic my entire body has been affected in nearly every body system. I have neurological, and cognitive issues from it which is debilitating most days. It has given me depression, and anxiety trying to manage all of it. Low-impact seated biking helps mitigate my tachycardia, but I crash if I don’t pace myself. Staying hydrated with electrolytes helps me some days, but it hasn’t been enough to fully manage it. It has been hard to find medications that work for me because my body has become very hyper sensitive to meds. My GI tract is deeply affected so my stomach muscles aren’t working properly. This also affects how my body absorbs nutrients, and meds. It has caused malnutrition with a 55 pound weight loss. I’ve tried a few different medications with little relief. I’m now going to attempt two more new meds to see if that makes a difference. Propranolol and Midodrine to counteract low blood pressure swings from the other medication. Taking daily high dose antihistamines such as Allegra 180mg, and Famotidine 40mg twice a day helps mitigate the MCAS, but not fully. I still experience many MCAS symptoms everyday with severe food sensitivities.

A wise message of hope I would like to give is take one day at a time. Take time to grieve your old self. Try to appreciate the small wins your body gives you. Seeking chronic illness therapy has given me great coping mechanisms to help me on the harder days. There will be highs and lows that you feel, that is normal, but giving yourself grace and grieving the life you had is also normal. Advocate for your health and educate doctors, as some may not fully grasp these conditions are connected. Ask others for help when needed. Find your tribe of support because you will need it! For people who know nothing about PoTS it is multisystemic. It is not just a little “dizziness” and a “fast heart rate” that subsides. Tachycardia can happen in any position. It can be a constant battle of trying to stabilize your own body. It is monstrous some days. It can make a person feel extremely ill. It can cause disability and make someone bed bound. It is life-altering. I hope over time by joining a volunteer group I can help raise awareness and help others struggling. As someone who was misdiagnosed and gaslit by doctors for months, having answers, I can now help others who also experience deep loss with this condition. This is my way of giving back to the world even if my life and options are limited by these disabilities. The more awareness, the better treatment and the more medical professionals on board can try to understand these conditions better.