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RunningWild

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About RunningWild

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  1. I had a cardiac MRI and trans-esophogeal echocardiogram when i was first admitted to the hospital. I was born with congenital heart defects (patent-ductus, and pulmonary stenosis), and had begun getting migraines with auras. I had a regular echo before i was admitted that showed a PFO, and they were concerned maybe i was having TIAs or other blood clot issues. The cardiac MRI showed no real structural abnormalities, and the TEE showed a PFO with some bi-directional blood flow. I don't think any of the cardiac issues were related to my POTS. I then did Holter Test and Tilt Table for the POT
  2. I didn't have the best experience, but I also didn't see Dr. Jaegar. I felt like the results of my two days of testing was: "She has POTS" which I already knew. Good thing my fam lives in Cleveland so it wasn't a completely wasted trip.
  3. Traci- What book? I've been seeing a chiro for a few weeks, and while I don't think it's helping the POTS as much as I hoped, he is certainly optimistic that it can.
  4. It's Blackout by Breathe Carolina. Very fitting for me And to yogini- They do believe that I have POTS, but none of my doctors are willing to try new things, to step away from the norm- which hasn't worked for me. We are our own best advocates, but its so tiring to constantly hunt for answers when we're so tired as it is.
  5. Im always cold as well.. and I really don't tolerate the winter months well... This past weekend, I went to Old Navy shopping with my parents. Everything was going as well as i could have expected, but then suddenly my whole body turned a firetruck shade of red. The grossest was the layer of clammy sweat on my back... which is also strange, because i hardly even sweat when i was running (especially not on my back). It didn't go away until about an hour later, when I was freezing cold again.
  6. Cleveland Clinic dx'd venous insufficiency in my legs/pooling when standing my vascular surgeon here in Pittsburgh confirmed it was a bad case for a 23yr old. I had greater saphenous vein ablations on both legs, and phlebectomy on my calves. i went from having purple feet all the time, to having two normal pink legs/feet. The change there is really spectacular, but it really didn't do much for the POTS symptoms.
  7. My primary care doctor keeps asking me this. Like maybe I will magically come up with the answers... But I don't know what comes next. My Electrophysiologist threw some ideas, like I could go to Boston to see a Dr. friend of his. That's kind of a stretch. My Dr. at Cleveland Clinic basically gave me a list of meds (that i previously had bad reactions to) and sent me on my way I had vascular surgery to reduce blood pooling in my legs (success, by the way) but POTS is still an issue. I'm just now stopping my birth control to see if anything changes. It's my last resort. Where do we go when th
  8. Seasonique basically destroyed my life for a year, but I dont know if I had POTS then. It made me moody, irritable, no sex drive, tired all the time, etc. etc. I came off of it and switched to Zovia and I've been on that for 2 years now. I'm a much happier person, but I guess my POTS stuff happened since starting this. My boyfriend wants me to try and come off BC all together to see if my POTS goes away. Its sorta like my last option.
  9. Yeah when he told me how the procedure would be done, i almost puked out of sheer nervousness. Im sure it will be much worse lol
  10. So I know a couple of people have posted a bit about blood pooling in the legs, valve and vein issues, etc. Well I finally had my appointment with the vascular surgeon at my nearby hospital. They did ultrasounds on both of my legs and determined I have severe venous insufficiency- the valves aren't getting much back up toward my heart when im sitting or standing. When the Dr actually came in to speak with me, he was shocked that I'm only 23 with such bad varicose veins and the extent of my problems were upsetting. He also DID RESEARCH ON POTS (!!!! OMG!) and said he thinks that if this isn't
  11. So I had my first appointment with a psychologist yesterday. She had me take the Beck Anxiety Inventory right off the bat. Nearly all of the symptoms are the same as POTS But I know that POTS side of me isn't caused by anxiety (i am not anxious upon standing, but heart rate goes up) And I know that I have anxious tendencies and have had anxiety attacks before POTS even began How can we differentiate? How can we make one better if the other is always there? My psychologist does not prescribe medication, but what are typical options for anxiety? I was on Xanax but basically just used it to sle
  12. Cleveland Clinic testing suggests I pool a lot in my lower legs... I am seeing a vascular surgeon in August to do ultrasounds of the veins in my legs.
  13. Hey all. Recently I have been having a hard time getting more than approximately 4 hrs of sleep each night. It doesn't have anything to do with the inability to sleep, really... I constantly wake up in the night because my limbs are numb. Mostly my arms, but sometimes my legs too. If i roll over and even remotely touch one of my arms, it goes numb. Legs fall asleep if I curl up. The only time I sleep is when Im stick straight on my back.... but I can't sleep like that because its not comfortable. Any ideas?
  14. Weirder for me: I went to see my gynocologist for a yearly exam yesterday and told him a lot has gone on since i last saw him. He said "not really. I have had 3 people with POTS come in this past month. Its no big deal" Kind of like a slap in the face.
  15. I am originally from the burbs of Cleveland. Living in PGH now.
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