lulusoccer

I am working full time as a registered nurse. I work 8 hr evening shifts (I'm the most symptomatic in the AM). So it works out well for me. I actually find that the movement from working really helps me a lot. It keeps my BP up. If I work out, I do so after work as well - I feel almost normal in the evening. Of course there are days where I am more symptomatic. For instance today my HR was 147 rising this morning, and 120-130 almost all morning and even into the beginning of my shift it was 120's. Although I think I've just gotten used to the elevated HR because I have had it for ~ 8 years and it doesn't really bother me other than I am more tired and I had a headache earlier today. Honestly, my days off work are the days that I tend to feel the worst because I'm not always moving as much or I am moving too much (aka..cleaning!) and then I end up having to take multiple naps during the day..which is like a vicious cycle because I always feel worse after napping (initially until I'm up and moving again lol). I would say, if you can work, go for it! It makes me feel "almost" normal! However, I also don't have kids or any other responsibilities so this makes it very easy for me in the mornings if I need to take a nap or something before work I am able to. I think it would be harder to manage a family and work at the same time.

I just wanted to mention that paracetamol (In Europe) is the exact same thing as Tylenol in the US! Also known as acetaminophen. They are different than Ibuprofen as that is an NSAID! But both do help lower fevers!

I wonder about this as well because mine was low in 2010 (I've been symptomatic for 8 years but wasn't diagnosed until this past september). It was <1.0 (Done at quest as well). I never even knew it was low until this past summer when I requested all my lab work for the past few years and found it. It was rechecked this summer and it seemed more normal at 7. There are some interesting clinical trials going on/research that suspect POTs patients may have some sort of impairment in the renin angiotensin aldosterone system. I guess once more research is done maybe we will get more answers!

Reduce the fever to help lower the HR. Tylenol or Ibuprofen should help with that.

When I went in for the test the cardiologist asked me why they were doing the test and I mentioned that my endocrinologist thought I had POTs and just wanted to confirm it with the TTT. The hospital doesn't have a POTs protocol (I work at this hospital - the Dr. doing the test didn't know I worked their either), the cardiologist just knew what POTs was. I have never fainted before so there really wasn't a reason to make me faint. The cardiologist did suspect it would happen if he continued the test but he said there wasn't a point because you don't need to faint to get a POTs diagnosis. So maybe mention when you go for the test they think you may have POTs and want to confirm - if so you may get the shorter test like I did. (Unless you aren't meeting the criteria for POTs they will continue with the test). The cardiologist wasn't in the room the entire time he was right around the corner - he was there at the beginning and saw the instant rise in HR and then walked away and the RN called him back in when my HR was 149 and the test ended. He was even like we can stop the test after the first minute because he said it confirmed my diagnosis but he was like well let's just go for 10. The TTT may have initially been intended to diagnose syncope but it is definitely the gold standard diagnosis for POTs. I suspect in the future insurance companies will accept it as a diagnosis for coverage of the test but those things take time.

My experience wasn't actually bad. I have read a lot of other people's TTT stories and it seems like a lot of people have a bad reaction but I think it is also very individualized so don't automatically think you will have a bad reaction just because you have POTs =). For mine, they hooked me up to a 12 lead EKG and placed an IV (Saline lock) in my arm in case they needed to give me any medications. They had me lay on a bed for a few minutes and took my resting heart rate and BP. They then raise the bed up and continue to monitor your vital signs for the remainder of the test. My HR went up initially to 120's and then by the 10 min mark it was 149. At that time the Cardiologist monitoring the test said we have the diagnosis of POTs and there is no need to continue the test so they laid me back down =) They didn't need me to pass out or have to give me any medications. I had a mild headache later on in the day and was tired so I took a nap. During the test I did feel a little faint and hot but that was it. I hope yours goes well =)