Julie

I need to talk to others who understand. I am so tired of telling family members how bad I feel, only to get the same old "whatever" type reaction. yesterday, I was already feeling bad. We had storms and rain for a few days and that always makes me feel bad, so i didn't sleep well. And am awoken way too early by the maintenance man and landlord because someone spray painted 5 porches, my car, and tore the ramp off my house. I have a power wheelchair because I can't go places that require standing and I have 3 kids. I live in low income housing and am a single mom. So, yesterday, all I wanted to do was go back to sleep. I didn't feel well enough to care about the car or the porch; but I had to wait and talk to the police. (The ramp goes through the neighbors grass too and she wanted to plant flowers and says I don't need the wheelchair. That there is nothing wrong with me and it is in my head) And on top of police report and talking to neighbors and getting my son to clean off the windows at least of the car.(at least that came off); I still had to be mom and take care of my 3 kids. (the youngest has juvenile diabetes, so she has to have insulin injections 4 times a day and eat at regular times- and on a normal day it's hard enough) But somehow I had extra energy yesterday (adrenaline or something and was ok.) But today I can't stop crying over everything and shaking and I feel soooo, sooo bad today. And when I tell my family it's because of yesterday they are just kind like "so... or... ok" I don't know what I expect from them. maybe just understanding. Thanks for to taking time to read this Julie S. ( I have had POTS for 8 yrs and used to come to this forum,but haven't for a few years, but I think I need to relate to others who understand again.)

I took Florinef for 4 days, and it was right after my Tilt table test. So, I was feeling very bad. But I think the Florinef made me feel worse. I got terrible pain all over my body. It felt like bone pain to me. My back and shoulders and wrists and ankles and legs were the worst. And it also made my stomache really bad. My dr. wants me to try it again. I haven't decided yet if I will. I am convinced it was the Florinef and not the tilt table, that was causing the "bone pain" and stomach problems. Hope you're better, Julie S.

I was just recently diagnosed with POTS. I had the Tilt Table Test on Friday and passed out in 4 minutes. So, my dr. finally started me on Florinef. My question is do these food/ meds etc. cause you to be more lightheaded/unable to stand long? Or do they effect just your digestive system? I'm really going to have a hard time if I have to give up carbs and sugars. (these are my favorite foods). But I guess I need to feel better. I will have to do it, so I can function again, if it will help. thanks, Julie S.

I have been diagnosed with POTS but not started on any treatment until they actually do the tilt table test. and thats not until Nov. 12. I have noticed after eating my symptoms get much worse. Yesterday, after dinner I could feel the blood flowing in (or out of or something) of my hands and arms and face. Then I got an instant headache, and started to get numbness and pains in my hands and arms. And I got severely lightheaded, like I could pass out. I had shortness of breath and my heart was pounding very hard. My vision got blurry and I was so cold. And I was so weak and so very, very tired. I had to lie down. Being up made it much worse. I didn't even eat very much. Is this normal for POTS? How do you deal with it? thanks Julie

Hi, I just found this website, and it's wonderful to be able to talk to others going through the same thing. My cardiologist actually diagnosed me with Ventricular Tachycardia and Orthostatic Intolerance. And when I looked this up, I found that I have most of the symptoms of POTS. I think I have had it mildly since I was in my early 20s, and I am now 34. About a month ago, I was put on Paxil for my lightheadness and brain fog. And after the 4th dose, I had chest pain, shortness of breath, extreme lightheadedness, my arms and legs and face went numb, and my heart rate was up. So, I called my PCP and he sent me to the Er. They admitted me and kept me for 4 days. They did all kinds of tests. They put me on Toradel which made all my symptoms 10 times worse. And then I saw a cardiologist, who sent me to a more specialized cardiologist. And this is where I got my diagnosis. I still have to have the tilt table test on Nov. 12, before any treatment is started. I had never heard of an intolerance to standing up before and I didn't really believe the cardiologist at first, until I came home and researched it. And it is unbelievable how many of the symtoms I have. I have been feeling really bad since this all started on Sept. 23. I have been extremely lightheaded, numbness in my right hand, chest pain, fast heart rate, shortness of breath, and these are only my worst symptoms. I definitely get much worse when I've been standing, and the steps have been killing me. Sometimes when I stand up I can feel the blood flowning in my hands, face, or feet. And then they start to hurt. So, I am trying to not do as much until I start some kind of treatment. I certainly hope something will help me. I homeschool my 7 and 9 yr. olds, and I have a 2 yr. old. So I can't sit down all day. Julie