pink1975

I have a friend who while she believes that I feel sick always says "But you look so good!". At least we get to look awesome while feeling so crappy! I have another friend who gives me a look like "yeah right" when I tell her how I feel. I think that it is impossible for people to believe that you are feeling poorly if you look good, that's just the way most of us are taught, sick people LOOK sick. If you are sick, you get thin and pale or lose your hair. Another friend of mine who is young and good looking has Parkinsons. She has a service dog that she brings everywhere. When I first met her, I thought she was just being quirky by bringing the dog along with her everywhere. Turns out, her dog calms her enough that her tremors are almost invisible. Luckily, I am not ignorant enough to have actually said anything about her dog, especially before I had any clue what he did for her. Just try to remember that the people who say stuff to you about your dog are just plain ignorant!

Yep, he's a big butt when it comes to understanding any of this. He went with me for the tilt table test but didn't go in the room. I failed it in sixty seconds so that should have been a clue for him, but he was just happy that we got to go home earlier than they told us. He is hanging on to the original anxiety diagnosis that I got years ago. So, his reason for my failed test was that I just "freaked out". I agree with you that many people, not just our spouses have no clue what POTS is like. Maybe someone should invent a POTS simulator that we could make people try to show what it is like.

I have been sick for many years (at least 13, since I started to get sick after my first daughter was born) and along the way have picked up diagnoses of asthma, allergies, celiac, fibromyalgia and now POTS. All along the way I have been doubted by my husband. He tells me it is all just me "freaking out", his way of saying I am having a panic attack since we all know that panic attacks are cured through antihistamines, asthma inhalers, and a gluten free diet, lol. The couple of times I have actually fainted due to POTS, he just tells me to knock it off and get up off the floor. Last night, after fighting dizziness and brain zaps all day, I was particularly exhausted and couldn't go on another minute and had to lie down. This was after a full day at work, taking my daughter to ballet, going to the library, taking the kids out for ice cream, cooking dinner and helping my daughter make an easter hat for school. I put the kids to bed and told him I was exhausted and had to lie down immediately and he said "or just lazy". I am positive he will never get it. I wish there was a way to bestow our symptoms on others for exactly one day to show them what it is like.

Just piping up to add a me too! At least 3 times a week. I didn't realize that it could possibly be from POTS, lol.

Thank you for your informational post. I have experienced many of the additional symptoms you talk about, not just the tachycardia. Right now I am sitting here with a wicked case of brain zaps that I am convinced have to be caused by POTS. I also get adrenaline rushes, odd vision (like things moving that I know are not, such as people's faces being wiggly), wicked fatigue, shortness of breath (some days I can barely walk from my car to my house), and overstimulation (going to the movies is a real trip, I had a total meltdown from the last Breaking Dawn movie, couldn't stop crying for over a half hour, but then again even the Muppets movie made me cry). The good thing is all this stuff used to make me panic, but now I just tell myself its ok, its just POTS. I have had all kinds of heart tests and my heart is good so I know that I can just wait it out and it will be ok.

Don't be embarrassed. A couple of months ago I had to leave work by ambulance and spent several hours in the emergency room. I was so embarrassed and was apologizing over and over for wasting their time. I thought I was just having another "panic attack" which is what everyone always told me was my problem. There was a super great EMT that told me to stop apologizing because nobody causes this on their own. Hope you feel better!

About a month ago I finally got a POTS diagnosis through a tilt table test. I stayed upright exactly sixty seconds and my heart rate was 170 when they stopped. It felt like all the blood in my body was trying to leave through my feet. Worst test I have ever had and I have had quite a few as most of you have probably experienced too on this odd journey. ANYhow, I have a couple of questions. My cardiologist said to eat salt and drink fluids. How much salt? How much fluids? Also, do your POTS symptoms worsen in relation to your menstrual cycle?