Does anyone have Potts syndrome,Ive spent the last 5days with serious heart palpatations,I came home from the hospital with a heart monitor Monday,This is not the first time this has happened to me,I’ve had heart problems for yrs,my first heart surgery was when I turned 40…I have been awake all night my heart just won’t slow down,Sometimes it scares me,we live almost an hour from the closes hospital…Im so tired of lupus,every time I turn there is something wrong…if anyone has this,it would be nice to hear from you with any suggestions…I feel like crap and I’m leaving for Maui on may 26…CELESTE …
Hello Celeste,
There's a member with it, her username is "Potslupus" and she'll soon comment on your discussion when she comes on.
I don't have it but have come across reading about it while looking other issues up and there's many A1 Diseases besides Autoimmune Diseases which can cause this.
You may find the link below interesting on diseases which can cause it besides mimic the condition.
http://www.dinet.org/what_causes_pots.htm
This link explains the condition more, while your waiting for responses in due course :)
http://www.medscape.com/viewarticle/522421_3
"Pictures on how the Disease affects the body"
I to have had the experience and it has been soo frightening at times my husband has wanted to rush me to the hospital.. i saw a cardiologist had and ecg and my heart rate was 110 accompanied by a squeezing/stabbing sensation to my heart. they made me wear a montior also for 24 hrs and found nothing wrong.. its scary, frustrating and stressful..my rheumatologist told me to manage my stress (which at time i find impossible) and exercise..it seems to help a bit but i still continue with the intermittent pain and palpatations..i hope you feel well soon..nothing more frustrating then feeling crappy all the time..
Hi bre,
Thanks so much for the input to help Celeste as it's much appreciated :)
bre1015 said:
I to have had the experience and it has been soo frightening at times my husband has wanted to rush me to the hospital.. i saw a cardiologist had and ecg and my heart rate was 110 accompanied by a squeezing/stabbing sensation to my heart. they made me wear a montior also for 24 hrs and found nothing wrong.. its scary, frustrating and stressful..my rheumatologist told me to manage my stress (which at time i find impossible) and exercise..it seems to help a bit but i still continue with the intermittent pain and palpatations..i hope you feel well soon..nothing more frustrating then feeling crappy all the time..
Thank you so much for the information bre,I have to wear my monitor thru the weekend,so I won’t know anything until next week,I wish he would of let me up my heart meds,but he doesn’t want that to inter fear with the results,I could run a marathon right now,my house is spotless…I’m feeling so bad now I just want to get better for my trip,I could be headed for another heart surgery,not fun. "I so appreciate everyone’s help and input .xoxo celeste
i hope you feel better for your trip and get to relax and enjoy!!!! : )
Celeste
After five trips to the ER in a ambulance with my heart rate at 180 to 200. I was put on a beta blocker to slow down my heart and keep it in a regular Rhythm. That was over 13 years ago and I am doing just fine. You might want to ask your doctor about that.
Also biofeedback may help you at night when you are trying to sleep. It helps you relax and take your mind off the heart rate!
I remember how scary it was and I had to find away around it! We can be our own worst Enemies, with stress and Anxiety. You can help to control it.
Deenie
I have had so many EKGs and worn heart monitors too. My heart rate was staying 130 to 150. My blood pressure was kinda high but it’s been staying at a pretty good rate lately. My heart rate still goes up to like 125 but I do slow l, deep breathing and it helps a lot. When you are stressed or scared then your heart rate will go up so try to go into a quite area or lay down and do the brearhing and it will help you feel better. Best of wishes and good luck!
PS: mine started from a medicine I used to take.