I've been diagnosed with POTS recently. Originally I was relieved because I've been searching for the answer for 3 years.
The confusion started during my pregnancy. My symptoms began and I brushed them thinking that it was the pregnancy causing the symptoms. After giving birth I continued to feel horrible but assumed it was from staying up with baby.  I returned to work and found  myself having horrible headaches and extreme fatigue. Lost my job. I couldn't go, and when I did go I couldn't stay.
I found that the more I did the worse I got. I kept pushing myself because I have never been one who needs to GO LAY DOWN.
I went to all sorts of doctors. Most told me it was depression which was frustrating because of course there was some depression. I lost my ability to function, that is depressing to any one and it is even more depressing when you know there is something wrong with your body and all you are told is that it is depression.
My symptoms continued to get worse and I stopped going to the doctors. The fatigue is out of this world. I started fainting in DEC 2011 and after a few fainting spells later I returned to the doctor. She found a thyroid problem, referred me to cardiologist, neuro, and endo. My thyroid finally stabilized but that a played little role in all of this. .
The cardiologist ran a bunch of tests and found the problem. I GOT POTS. Just like that, 3 years of suffering.  I hate that other people are going through the same thing but I am so glad to know I am not alone. There were so many days that I thought I was dying of some unknown illness.
So just the process of reaching a diagnosis was exhausting. I feel relieved to finally know what the problem is but I am so uncertain of how to manage it now. I don't know what to do to get  my life back. I thought that once I reached a diagnosis that there would be an obvious solution. Honestly, I don't know if I should stand, walk, sit, lay down, or hang upside down. I know to drink water and take my medication but does anyone have any advice for avoiding or minimizing the bad days?
Trooper219 Trooper219
26-30, F
3 Responses May 4, 2012

I too suffered for over 2 years before I found my answer on the internet and took it to an electrophysicist cardiologist who diagnosed me with POTS. It was so frustrating not having anyone in the medical community not know about this! I was sent to every kind of doctor and none of them knew about POTS! During the worst times, I was bedridden for days on end, barely able to get up to go to the bathroom or fix myself something to eat. My doc just prescribed Effexor and after 4 days, the results seem to be incredible. I just went grocery shopping without having to practically lay on the cart for support! I have hopes that maybe I can live a mostly normal life from here on out. I am 47 years old.

It's only a temporary solution, but listening to music can help. I find that it works best with earphones. Other than that, what helps me is to wear some kind of restricting clothing, especially leg wear. Drink a lot of water, eat a lot of salt (or use salt tablets), and make sure to exercise every day. That last one is mindbogglingly hard, but perhaps the most important. One last thing, narcotics magnify pain with pots. Before the diagnosis, the doctor likely proscribed some form of narcotic. If you are on a narcotic, then it is imperative to get off of it as soon as possible. Good luck! If you have any questions, my email is gone119@hotmail.com.

Thank you, thank you, thank you for your comment. I feel so alone at times so I am happy you responded. Your advice is great. My conflict is that I have not been able to allow my body the rest due to my daughter. After I lost my job, the responsibility of watching my daughter was next. The doctors could not find anything wrong with me so my husband was like, "you're fine, watch the kid". She got so active and I could not keep up with her and that is when I started hitting the floor. After my diagnosis, my husband agreed to put her in day care so I hope I will be able to take better care of myself. She should be starting in 2 weeks. <br />
The only thing I have found that relieves some of the symptoms is my Chiropractor. I did not even realize for the longest time that it was helping my symptoms. I have been documenting the majority of it all so when I looked back I realized that I had more good days after I went to the chiropractor. I'm also thinkin about trying acupuncture.<br />
I cannot believe how thirsty I am.<br />
I am just going to keep fighting each day, listen to my body as much as I can and tell everyone I know about POTS.