cbear1591

I used to be on the pill. I hated having to take hormones and I didn't like the uncertainty of the long term effects,but I have horrific cramping. Within 4 years, I had been switched between 5 or 6 different pills. Now, I am off the pill for good. I did have a recent visit with Cardiologist and he said that a lot of birth control pills have diuretics in them that can make POTS worse...I thought that was pretty interesting.

My husband is very supportive, but he does have his times when he gets frustrated. Not necessarily frustrated with me, but with the lack of answers regarding my condition. I am still trying to find a good specialist, so it's very tiring. My dad is very supportive and always offers to go to doctor appointments with me. On the other hand, my mom thinks everything is in my head. She tried to convince me to go to a psychologist because I was "losing my mind." I find this so crazy since she has seen my symptoms first hand. I am just very happy to have a supportive husband that will do extra things for me when I am not feeling well. I can't imagine going through all of this alone.

I have been very fortunate with my job situation. I have a desk job, so I am sitting down the majority of the day. My boss and coworkers are very understanding of my situation. If I need to take a break, they are totally okay with it. They make sure to stay on me about eating enough salt and drinking enough water. If I am not feeling well, my boss will gladly send me home (sometimes without docking my time). The most important thing is getting somewhere with a strong support system. Teamwork is so important. I can't imagine going through this diagnosis process in another job with people who are not as understanding.

artluvr09,

I can completely relate to you! I was trying to explain to my coworkers how the brain fog felt. I said that I wasn't getting enough brain to my oxygen. ; ) So, that's the new joke. Anyways, there is no pattern to my bad days at all. The past few days have been tough, but I am trying to keep positive. Oh, and the blurred vision happens to me too! It's like my eyes cannot completely focus on what is on my screen. It's crazy and frustrating. I am going to a cardiologist at Emory in Atlanta Tuesday, so maybe he can help me out! If I get any good tips or information I will definitely post them!

I recently got a look at my TTT results and was alarmed by the following note: "She lost consciousness and had early seizure type activity due to a drop in her heart rate to about 80 beats per minute and blood pressure to 81/49 mmHg." None of the doctors I have seen so far have mentioned anything about this, so I'm not sure what that means. Does anyone have any experience with this? I don't know if this is a normal symptom for POTS patients...

I make my own concoction using an infuser bottle. I use coconut water, salt, and oranges. It tastes great and seems to work just as well as drinking Gatorade.

Unfortunately, I have yet to find out what is causing my POTS. My symptoms first showed up around puberty and have seemed to get progressively worse (I'm 23 now). I was diagnosed with POTS in August of 2014, so I am still trying to get to the bottom of it. I have an appointment with a neurocardiologist at Emory in Atlanta in April, so I'm hoping that will shed some light on the situation.

I'm so glad to know that others have experienced this feeling! I really hate when it happens. Sometimes it'll last all day or just an hour or so. I would say it's similar to what happens to some people when they start taking anti-depressants. They describe a disconnected "out of it" feeling. Very strange and unnerving.