top of page
  • Saskia Müller

Living with PoTS

For those who aren’t familiar with the terrm, PoTS or Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. The long and short of it is that I have VERY low blood pressure and a VERY high heart rate, I cannot control my temperature, heart rate, blood pressure or anything that is AUTOMATIC in my body. My blood flow is one of those things as well which is why I look so pale all the time. Nope it’s not a lack of sun exposure. It’s just something I have that I can’t change. I also bruise extremely easily. If I slightly hit my arm on a door I will have a giant black and blue bruise the next day.


I spent my entire life up until last month not knowing what was wrong with me. I was misdiagnosed with Anemia in high school and couldn’t figure out why I was so exhausted all the time. I was put on medication last summer and for the most part, I have been a lot better. The medication, certain exercises and an increased sodium diet are for sure things that helped me. However for reasons I do not want to go into I recently had to wean off the medication. This has been EXTREMELY difficult on my body.


All of a sudden I was exhausted at 1 PM daily. I had a hard time staying awake. I was feeling overly nauseous and like I had vertigo. I was hot, then cold, and so forth. My doctor had me start taking salt pills or supplements rather. Yes it helps but even on days where I take a ton of salt supplements and eat salty foods and do my exercises that help the circulation in my legs I still can feel really crappy. It’s unfortunate but I know so many people have it so much worse off.


The biggest thing being diagnosed with PoTS has taught me is that you should always listen to your body. If you know something is wrong and doctors are telling you, you are fine. You need to find the right doctors. If you have a diagnosis and you know you are exhausted and aren’t feeling well. You need to listen to your body and rest.


There are a ton more daily things I deal with like: blurred vision, awful headaches, chills, loss of appetite, issues sleeping etc.

 

Last time I talked about this I had several people email me telling me they had similar issues and after my post they went to a doctor and were diagnosed. There are less than one million diagnosed cases of POTS in the UK but studies have shown it should be 3-4 times that many.


If you think there is something wrong with you, please see a doctor!

0 comments

Recent Posts

See All
bottom of page