Nov 17, 2010
If you have POTS you probably know what it feels like to have every doctor roll their eyes at you until they see your symptoms first hand, and if you don't then you can see how rare it really is. (POTS) Postural Orthostatic Tachycardia Syndrome is still a mystery and has no cure. There are treatments and I have heard stories of people growing out of it. I was on Fludrocortisone (a steroid commonly used with POTS patients) for about a year and a half but the side effects I experienced were too much to bear. I experienced severe pain all over. No one could hug my without me crying, even the clothes I was wearing hurt touching my skin. I couldn't take it anymore and decided the symptoms of POTS were worth the risk. I slowly got off the medicine and then I was back to passing out on a regular basis.
By increasing my intake of water and salt I was able to get back to a more normal life. I still pass out but usually I can sit down or lay down before it happens. I cannot participate in sports let alone walk up the steps without having my heart racing but I have been able to maintain my POTS with more success as time goes on, however pregnancy is a whole new adventure.
Passing out is the biggest problem I have had with POTS but my blood pressure comes in close second. I experience what my family calls POTS episodes. My doctors don't know what to make of it and I have not heard of anyone else having these experiences. These episodes cause chest pain, palpitations, weakness, lightheadedness, trouble breathing (sometimes no breathing), occasionally blue lips and feet, cold to the touch, and ultimately very low blood pressure. The only way to help in these situations is to sit down with feet propped up, a blanket over top of me, fuzzy socks on my feet to help retain body heat, and start really concentrating on breathing until the episode is over.
The cause of POTS is still unknown however there are theories. Two of these theories could have contributed to my POTS. One; I have had too much radiation. Ever since I was very young I was in Dance, Gymnastics, and Cheerleading. With these came a lot of injuries which resulted in many x-rays. I have had more than 30 serious injuries that each had several x-rays performed. Two; something snapped in my neck that shouldn't have. I went to the chiropractor 2-3 times a week to relieve pain from old injuries. There was a day that my neck pain just wouldn't let up no matter what I did so when I went to the chiropractor he tried something new. It felt rather painful when he did it, numb afterwards, and then back to the sharp pain I had prior. 20 min after I had gotten home I passed out on the sidewalk in my back yard. Ever since then I have had this problem. Of course the chiropractor assured me he did nothing to cause me to pass out and other doctors think there must be a different underlying condition or they say I don't have it at all and then look stupid when they realize I wasn't referring to Pott’s disease -a presentation of extra pulmonary tuberculosis that affects the spine-. Only one doctor was able to find out what I had using a tilt table test, he was also the only one who actually seemed he wanted to help me. The cause of my POTS may never be known but surviving it is my main concern, especially with my baby on the way.
If you have POTS, similar experiences, or any questions feel free to chat with me.