Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by katT

  1. In a recent post many of you were saying you get uncomfortable or scared when you get Brady...I am reverse! My heart rate will be around 50 and I am fine with that. It gets over 100 when I am just sitting or lying down and it scares the pants of me. My question is how high do you typically get before you go to the hospital? I think I freak out unnecessarily sometimes but when I get tachy or irregular beats (PVCS or PACS) I get so worried. Any assurances would be nice! I hate running to the hospital anytime my heart goes between 115-145 as they just give me fluids and send me home. Yet I can't
  2. Michelle and GSNicole - thank you so much for the information, even though it sounds like you both had quite a go of it. Esp you Nicole...oy!! Doesn't help qualm the apprehension LOL...so hopefully there is some POTsies out there that had POTs while pregnant with good results Luckily I LOVE my obgyn and would fly across the country to see her...but she just stopped delivering babies a few years back. So I will probably see both her and one of her associates. She is very willing to learn and listen and order tests for things when I ask, so I feel she will be the same way during pregnancy. Char
  3. Hi everyone, So we would like to have kids but I am, quite frankly, terrified. Pregnancy as a "regular" person has always seemed a little scary to me...but pregnancy as a potsy is intimidating to say the least. I am worried about a ton of things...such as my heart rate going or staying tachy way to long, increased pain, increased dizziness, increased migraines, BP issues, and other symptoms. I have no idea what to expect and am hoping that all of those who had POTS while pregnant can weigh in...whether that is good or bad. I just want to know what to potentially expect. Also, did you wind up h
  4. I love this post! 1) I LOVE salt...now I have a doctor-approved excuse to eat lots of it!! 2) I have a great excuse to not have to give blood (although I give enough in labwork ha!) 3) I have a greater empathy for others with unseen illnesses 4) I have learned to research and become a very active advocate for my health with my doctors and helping others do the same when they get brushed off 5) I am more in tune with my body
  5. Sorry I don't have any good advice, but I have my fingers crossed for you! I don't fly either because I am terrified I will have an "episode" on the plane, not to mention potentially making my symptoms worse. The only thing I can suggest is to make sure you have lots of water before, during, and after the flight. Also, do some calf raises and pulses while in your seat to help with the blood pooling. As far as your relatives go, hopefully they are an understanding bunch if you need to re-adjust for a few days! Wishing you luck! Please let me know how it goes and any advice or tips you find afte
  6. Abby, I have dizziness or odd sensations more days than not. So I feel for you!! Mine is worse when I am tired as well. It is also worse with hormonal fluctuations before and during menstration. And I swear at other times for no apparent reason at all!
  7. Sorry to hear about the weight gain! Were you on the brand name or generic? I take sertraline (which is the generic of zoloft) and only gained 5 lbs. I then started to track my calories more and once I got adjusted I am back down to my pre-med weight now. I would definitely talk to your doctor about it. Both my mom and sister took lexapro and both gained a fair amount of weight on that...so I would personally be apprehensive about that one. Good luck!
  8. I went to a new neurologist at OSU autonomic lab today (who was a really great doctor!!) and he said on top of the pots I have a "migrainous brain" and even when I am not having an active migraine I am still having symptoms (ear fullness, odd head sensations, dizziness, light sensitivity). SO...he prescribed Topiramate 25 mg PO once a day and we are going to be titrating up to 2 PO twice a day over the next fews month. Does anyone else take (or have taken) topiramate on a daily basis? Any side effects? Did it make anyones tachycardia or dysautonomia worse? I am worried it will affect my PVCs,
  9. Hi Friedbrain! I have issues with working out too. Your words "dizzy, then tachycardia, and then all-over body shaking" could have been my own! I will get dizzy, tachycardia, flushing, and then all-over body shaking. I thought maybe I am having a MCAD and/or hyperadrenergic reaction but haven't been able to confirm or deny this yet through medical tests. Have you taken your BP during this time? I had an intense episode about 3 weeks back and I had my BP cuff on me and it would range from 99/80 all the way to 165/117!! The high numbers really scared me. I did, after nearly 2 hours and no come d
  10. Thanks for the warm welcome everyone! SO happy to know I am not alone or crazy Sounds like a lot of you experience POTs flares with GI distress. I swear at times I do not know what comes first...the POTS symptoms or the GI symptoms! Although ANY time I have GI upset or acid reflux I feel POTSY. potsgirl93 I get a similar issue with swallowing. I can swallow fine, but I often feel like my throat is tight or closing like someone is choking me lightly. I hate that. I do get flushes with GI issues, which then triggers the tachycardia and dizziness. Do you get that order to flushing > tachy>
  11. Newbie here and just wondering if anyone experiences an increase in their symptoms with GI upset, GERD, or heartburn? I've noticed that if I have some heartburn or GERD type issues going on it can cause tachycardia and/or dizziness. Does anyone else get this?
  12. Hi Kimbellgirl and Anna, thanks for the welcome! Kimbel - my initial DX was vestibular neuritis with partial dysasutomonia in 2005. Then nothing (no symptoms/meds/etc) til car accident in 2010. Now TTT and cardio said POTS. I haven't had a continuous holter...just an event recorder that would record only when I pushed the button. I am thinking of asking for one that goes continuously so it can catch everything, even when I sleep. Sorry yours got unplugged when you were sleeping! My BP cuff detects irregular beats too, but when it does that it makes me nervous. I hate that it tells me really! A
  13. Hi CarrieJessica. I wonder at times about IST...but I think that to have that you have to have a resting HR of 100+ right? In my understanding of POTS I don't see where one's HR goes up just doing nothing (usually just upon standing, etc). But maybe I am wrong. I just hope they aren't missing something! Sorry you are going through all of this as well!
  14. Hi everyone...first let me say how happy I am to find this site! I have been reading some posts and it makes me feel like I am not alone, although I am sorry other people have to deal with these symptoms too. Brief background: I was diagnosed with partial dysautonomia in 2005 but then it "went away" and I never had any issue or took any medications. So I thought maybe I was misdiagnosed (I had a pretty intense case of acute vestibular neuritis the same time I was diagnosed in 2005 via TTT). Anyway, I was rear ended in a car accident in 2010 and have had non-stop issues ever since. I have, lite
  • Create New...