surfgirl14

Hey guys. Thanks for all of the good lucks, much appreciated. I am back form Duke Childrens. Testing was quite painful for me but it was well worth it. I got the test results right away. Dr.kanter told me and my mom that I definatly had POTS. He was not a bit doubtful that it wasnt POTS. He said I had the classic textbook POTS. I did this test where I had to blow into this thing and Dr.kanter said that my BP dropped to almost nothing during that test. When they titlted the table up they said my heart rate went from 85 to 150+ . I almost passed out during the test so they put the table back down. He gave us a good treatment plan. I mentioned the IV saline treatment and he was open to letting me try it. We are doing the treatment plan of what he calls the 4 M's.

Medicine

More Fluids

Mechanical

Media

So I will be upping my doses of midodrine and keeping my flourinef the same. Oviously I know to drink more fluids. For mechanical I am doing a 3 month excercise program that dr.kanter and his team put togather for people with POTS. And the media which means he wants me to be socializing and networking with people like i alreadey do I will be doing a follow up with him in 3 months if things don't get better .. They are going to let me do IV therapy I am really glad the visit went super well! My prognosis was that he is expecting me to get better but said I may never fully grow out of it. But he also said that I do not have severe pots so that a positive.

Thanks for all the support!

Thanks everyone

Kaybers mom: Im sorry to hear she is back in the hospital hope she gets betters soon.

I know, I hope we can meet up soon!

Hey Guys. Just wanted to let you guys now that I am going to Duke Childrens tomm for my Autonomic Testing.

Wish me luck.

Thank you Yes so far I havent had anyone but im gona keep trying. If anyone knows of people in charlotte that would like to join please email me surfgirl14@gmail.com

Thanks.

Hey Guys. I am starting a support group for people with chronic illness. This Support Group helps people dealing with POTS a long with other similar chornic illnesses. I live in Charlotte, NC so the support group will be in the Charlotte area. If you are intersted please feel free to comment on this and I can give more information. I am really excited about starting this, I really want to get a group togather that is going to support and help others.

Thanks.

Ok thanks. Appreciate it

Hey guys. I am going for some testing on the 29th of this month for Autonomic Nervous System testing at Duke Childrens. I was wondering if anyone else has gone or taken their kids here and got this done at Duke Childrens. I see Dr.Kanter. I was told that I would have to get an IV in my artery and that was about it. I am a bit anxious and scared about getting this done. I hate not knowing what to expect.

Hello. Yes I have encountered this . A couple months ago I went to minute clinic for just a simple earache. The nurse there told me that she coudn't see or treat me. I was told because of the medications I was on, and that my immune system was compromised. I am also on fourinef. Hope this helps

That is a good question, and I always wondered this. I asked my cardiologist, and he said that it is not dangerous. He said POTS will not kill you so therefore you heart rate being high is not dangerous. He said that us potsies dont have a heart problem so it is not something to worrry about. However i have a hard time believing that. Sometimes it gets sooo high that I have passed out becuz of it. I am not really sure i believe him about it. I am planning on asking my other cardiologist at Duke Childrens the same question. I can let you know. Wish you the best.

I am 18 years old and it is a bit contraverseral what is pediatrics. I have been told 22 and some say 18?? So what would I fall into. I was diagnosed at 17 years old.

I see pediatric doctors .... pediatric cardiologist....and go to duke childrens. It would be nice to know. According to the American Academy of Pediatrics 21 years old.

Hey potsgirl......sometimes it will get as low as 70/48. It usually stays 90/60 which is fine when I am laying down. But sometimes it gets really low. Also the medicine is supposed to be helping with my heart rate and I have seen some improvement but not enough. It still gets up to the 130's-140's , but when I get bad it gets up to the 150's. I know a lot of POTS patients are way worse then that, but that is just me at my worst. I would say my condition is not as severe as a lot of people, but it does get really bad when I have flares. I am currently in remission thanks god (knock on wood) But I just wanted to see if I sholud be having follow up and sort of things like that. It is weird that they do not follow me more closely. I also was intersted in Vitaman B shots......do you know anything about that??

Thanks for the comment much appreciated

Ok Thankks. Yea I don't ever schedule follow up visits. I am now going to Duke Childrens and am scheduled for some testing, but thats about it. I have asked to do IV hydration because it really helps me but they just push tht aside. It's not like I want to go to the doctor every day, I just want to feel like someone actually cares about my health and how I am doing. Also it makes me feel a little bit frightned to be on all of these meds with no one monitering how I am doing on them. My heart rate still goes up high, and sometimes my blood pressure gets extremly low when lying down

Hey Guys. I was wondering how often I should be going to follow up visits with my doctor who treat my POTS? They never tell me to make follow ups and never check on me. The only time they call or anything is when I am have a flare-up. Also I am on Flourinef shouldn't I be having my sodium levels checked occasionally? I feel like I am not being monitered like I should be. Should I be having follow-up visits? And if I should who should I be following up with? Thanks.

Thanks you all for the responses. I will take into consideration all that you guys have said. I appreciate the help.

Hey guys it's me again. Ok so for the past week I have been having this really strange numbing/tingiling/pressure sensation that is really uncomfortable and bothersome in the left part of my chest right beside my breast. I am a bit freaked out, and it wil not go away. It comes and goes about every couple of minutes. It is realy startig to get to me. does anyone know what this could be, if you have ever had it with POTS??

oh ok. Yea it would be nice to know why we get this? My mom called Dr.kanter I cardiologist i see at duke childrens and told them about it cuz i went to my pediatrician down here for the testing (charlotte) and the nurse for Dr.kanter said they want the test results ASAP and they might send me to a urologist. soooo idk. Havent got the test results back yet ... i hate waiting

When they did the testing for it "in depth" did they find anything? They said they are going to check for some levels to.

ok. Thanks a lot for the information.

Hey guys. This is a sensitive subject but .... I have had blood off and on in my urine for about 2 years. My pediatrician has always said it's not really a big deal and she just sends me home. In the hospital though I have had kidney functioning blood tests, and unltrasounds but they all come back fine. I just switched to a new pediatrician, and have been seing her. I recently went to the bathroom last week and was shocked to see blood in my urine. So I went to the doctor, and they did a urine test and found blood. I also have had bad flank like back pain in my lower back for about a couple years. This time it has wrapped around to bring discomfort to my stomach. They say they are going to send my urine off for more "in depth" testing. Has anyone else delt with this with POTS? Does anyone know what this could be or if it is even related to POTS.

Thanks.

I was diagnosed with Postural Orthostatic Tachycardia syndrome. I am on Flourinef and Midodrine. Thanks for the Replies and I will def. call my doctor.

HEy guys. I have been sick for the past couple of days ... very weak , shaky , and my heart rate has beens really high in the 140's standing and in the 110's-120's resting. It also leaves me very short of breath. I also have had severe headaches. Last time I got like this I had to be admitted. Should I call my doctor or should I be concerned? Help would be nice thanks

I really appreciate this information. You and Bella MIa have really motivated me to tell my doctor to let me try it. There is really no hurt in letting me do they IV therapy. I already have proof tht it works, and I am not going to give up. I am going to use the information you guise gave me and other things to influence him to let me do it. I am soo sorry you are having to go threw this, but am happy for you that the saline is working. I hope you continue to get better, and wish u all the best

Bella MIa- awww gosh I am sorry to hear that. I hope your legs get better Yea my mom's friend has a port, and it doesn't seem very fun. I am sorry you have to deal with this. I do know though if I ever had to get long term IV therapy .. I would get a port and not a PICC. The PICC has more risk for infection and I do not want that. It's hard being able to fight what I want though because I am only 18 and my mom pays and takes me to my appointments. She is very supportive though, but I can't go back to my doctor to ask him about these things becuz that is another $50 co-pay for us. I would love to march myself back up there and incist that they let me start b12 shots haha but I can't. I will def. message you in I need anything, you can do the same with me. Let me knwo if you need anything. Hope you will be getting better soon. Sending good thoughts your way

I voted lost weight. I have lost 25 pounds since the onset of the illness. I used to be 126 and I am now 101. Very concerned...hopefully I do not loose any more. Doctors say I am already underweight for a 18 year old , and that if I loose anymore my body will start eating my muscls I have been accused of being anorexic be serveral people :/ that makes me very frustrated. I am not sure why I am loosing this weight. It is very scary!

That is true. It's like you have to show them what you know about it, and how it will really help you. Actually you are giving me really good info thanx a lot I have never heard of b12 shots every month....what are they , and why do you get them? I am just curious I have never heard of this. The IV thing is something I have been looking into for a while and I have tried to convince him to let me try it, but he is hesitant. He let me try it once, but that was mainly because I was dehydrated. It really does help me though. Are cardiolgist aloud to perscribe the IV things, and set up the surgery to get the Picc line , port, or w/ever it may be? Thanks for the reply and all the help....much appreciated I really appreciate your support ... my friend lol Well hope you got some good sleep. Thanks soo much.