marymonet

Hi My daughter has POTS she is 24, so I am trying to learn what I can about it. This is what confuses me: My daughters blood pressure gets higher when she changes positions. Than I read that with POTS it usually drops when you stand up. Also her heart rate goes very high when she stands up, but also it can be very high at resting. I read that heart rate is usually not high in POTS when resting. Maybe I am just not understanding what I am reading, so if anyone can help, I would be grateful. There is so much to learn! Thank you Mary from Brooklyn

Hi . My daughter is 24 years old and has POTS. On her last EKG it said that she was having occasional ventricular premature complexes We always ask for a copy of the EKG and thats how we found out about it. The Dr. never mentioned it. Also we found out that my daughter is the only POTS patient she has. So where do we go from here. We live in NY. So does anyone know of a good Dr here. I hope you can help. Thanks Mary from Brooklyn

Thank you for your many replies. My daughter is still in the hospital, she might be able to come home if her potassium comes up. The Drs said that this can be why her heart is still beating fast. As far as Beta Blockers, they are given her Lopresser; Does she stay on them long term or will she be put on and off depending on her symptoms? Thanks Mary

Thank you for all your replies. My daughter has been in and out of the hospital since she was 6 years old. Mostly GI problems and othostatic blood pressure. She would dehydrate alot. She never really had a diagnosis, they just treated the symptoms. She would often go into shock because of the dehydration. When she was 20 years old, she had her gallbladder taken out, six months later she had another surgery for a stone stuck in her bile duct. She always had a GI motility problem and they said that it was part of the reason the stone got stuck. It was than her periods stopped, her blood pressure was very low, alot of different symtoms that didn't seem to match. They took a cortisol test and found out that her body was almost making no cortisol at all. The doctors were not sure if it was Primary Addisons or Secondary Addisons disease. It's hard to test once you start the patient on cortisone treatment, but in her case they could not wait. The last few years we have seen many DRs trying to figure out, why she was not getting better even though she was on cortisone, which is the treatment for Addisons. Her heart was always racing, especially when she changed postions. Her GI and bladder function was effected. She ran low grand fevers, night sweats and mirgrane headaches. Alot of Drs just said that it was emotional and the way they said it cut her heart like a knive. Finally the tilt test and a Dr who really looked at the whole person and listened and put the connection with all her symtoms. Sometimes its the not knowing, its the feeling no one believes you can be the worst part. Its just so good to talk to people that understand, I am so glad I found this forum. Thanks for listening Mary

Hi, I am new here. My daughter is 23 yrs old and has POTS. She has been sick for many years, but was never diagnosed until now. She also has Addison Disease. Right now she is in the hospital because of her heartrate. Last week she had a stomach virus and became dehydrated and her heart rate went crazy. I am trying to read all the information on POTS. We are also looking for a Doctor in NY who treats POTS. I am also having trouble understanding some things, so maybe you can help me. What is the difference between POTS and dysautonomia? My daughter has Tachycardia, does that mean something is wrong with the heart itself? She goes into hypovolmic shock just from being dehydrated and she gets dehydrated without vomitting or anything that usually cause that. I am sorry for all the questions. In one way I am glad that the doctors have finally gotten to the bottom of it. Before her diagnoses, everything was blamed on stress, she felt like she was going crazy! I can't wait for her to come home and come to the forum, and to see that she is not alone anymore. Thank you Mary