Let's talk: POTS

Wouldn't it be great if there was a pill you could take that would fix all your problems!! Medication can be one of the most frustrating parts of the POTs experience. The medication side of treatment is supposed to help lessen symptoms and it can be very frustrating trying to find one that actually helps you. I personally have tried Beta Blockers, Fludrocortosine, Midodrine and Effexor. Unfortunately, Beta Blockers were a nightmare for me. They are supposed to help with the quick heart rate but for me they made me lethargic with an extremely low blood pressure. Fludrocortisine or Florinef is supposed to decrease the amount of salt that is released in urine and therefore increase blood volume in the body. I am unsure how to feel about Fludrocortosine. I originally didn't think it was helping but after I came off of it, I fell into the worst three month period of my entire experience. I just started this medication back up again and we will see if it helps or hurts this time arou

So, in July I had my first tilt table test. I was told not to eat or drink anything four hours before and that was all the information I was given. I didn't look up what the test was because I have done lots of different testing and thought it would be similar. I walked in the room and the nurse asked me questions and walked me through the procedure. She told me that I would lay down and be strapped to the table then they would tilt the table to an upright position and monitor my vitals and symptoms. The test began and the second the table tilted upwards I began to feel awful. About ten minutes into the test of feeling extremely lightheaded, the nurse administered nitroglycerin under my tongue. After this I began excessively sweating, extremely nauseous and felt very faint. I don't remember much else. I passed out and woke up to the nurse giving me water and telling me to relax. This experience is extremely traumatic. For someone who is extremely symptomatic standing up, it was

Let's start at the beginning....... The last week of April in 2022 I was at a party with my friends and I felt very light headed and passed out. I woke up super confused surrounded by a bunch of people. After that episode, I felt pretty crappy but figured I must have been super dehydrated or something. Well, days and weeks started to go by and I had a lingering sense of dizziness and lightheadedness everyday and basically felt crappy all of the time. My first step was my neurologist I had seen for years for my migraines. They told me I needed to drink more fluids and take medication for my headaches. After a few more weeks of feeling crappy, I went to my primary where again I was gaslit and told to hydrate more. I went back to the neurologist the following week where they told me that it was vertigo and to take start vestibular therapy.  Weeks of vestibular therapy and testing went by and I wasn't feeling any better so I went to the neurologist a third time. This time I had a n

Hello all and welcome to my journey!  My name is Grace Quinlivan and I am a 21 year old female living in upstate New York. I am currently in my senior year of college. So you may be wondering what the heck is POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. Postural referring to a change in posture, orthostatic meaning upright position and tachycardia meaning a fast heart rate. Basically, when a human (without POTS) changes their position to an upright posture, gravity pulls the blood down and the body senses this. The autonomic nervous system then directs the blood upward and the blood circulates the whole body. For people with POTS, the autonomic nervous system malfunctions meaning when the upright position is assumed, the blood pools in the stomach and lower extremities of the body and the blood does not make it up to the head. This then causes the heart to try and compensate for the absence of blood in the head by beating rapidly. As you can imagine, this does not f