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Starburst0128

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About Starburst0128

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  1. Honestly they just come and go. When they are really bad and my heart rate is high I just go to the ER and get an iv of saline and they go away. Some days it's worse than others. Usually worse when my anxiety is high and my water intake isn't as high as it should be. They have almost completely went away since I started taking my midodrine and drinking the propel unflavored water.
  2. I get these and they are in my throat. Scary and annoying. Will stop me dead in my tracks!
  3. I take it daily not as needed but I love it!!! Best drug I've tried so far.
  4. I'm on midodrine 5mg 3x day and my bp fluctuates daily but I think it will in all individuals even healthy ones. Time of day, what we eat etc. also your menstrual cycle plays a huge part in it as well. I recently (3 months) went back on the depo shot and it has changed the ball game completely for me. I was ending up in the ER every 3 weeks because of my heart rate and bp. Maybe you could speak to your obgyn about a different birth control. Crazy how much our hormones affect bp and heart rate. I know with me my heart rate is always higher when I'm very anxious and really focusing on my pots. That's great you found a doctor who can truly understand what you are going through!!!! I am starting the Levine protocol in the next few weeks and hoping that is my game changer! I hope you get some more answers and start feeling better soon.
  5. Anytime I'm in the ER for my pots my potassium is usually low. For the longest time it was constantly low and my heart rate was always crazy. If your potassium levels are swinging out of sync it could trigger heart related issues. Are you taking a potassium supplement?
  6. Holy smokes!!! That's a lot of miles!!! Great job by the way!! I was very fit when all this happened but I don't know if I was having pots attacks or panic attacks. I'm thinking it started off as panic attacks because it feels completely different now. I bought a Fitbit to monitor my heart rate, water intake and sleep etc. I've noticed I'm barely walking 5,000-6,000 steps a day and that's because anytime I feel a weird sensation I stop immediately and I'm afraid to just get my heart going. I use to be the most energetic person around never missing a beat. I hope I can get to a point where I can do the miles you are. I miss rock climbing and repelling with my hubsand so I'm really looking forward to feeling better to get back out there and accomplish things again.
  7. Ya def the anxiety part I have to work on and also I'm really sleep deprived. I haven't been able to get max 6 total hours of sleep in 2 1/2 years. I know that's playing a huge role in this as well. I could hibernate this winter and be content haha. Once we pcs and get settled in I think it will get better because we are going to work on my son sleeping in his own bed and room.
  8. Thanks, I'm just wishing my hardest and praying with all I have that it's deconditioning. With my son only being two and my husband deploying a lot I just have to get better. Not having family or friends to count on when far away is not a good combo when you are really bad. I just hope I'm not in denial of this but since my doctors can't ever tell me I think that keeps me still on the fence.
  9. I don't think my doctors know ? they can't ever figure out why I'm having my tachycardia when standing bp the lowest is 90/60. I can't decide if my anxiety/panic was true panic and anxiety first and then after I had my son if me sitting around afraid to do anything is the deconditioning part. I saw 3 cardiologists and they all did the poor mans tilt and never mentioned pots and I don't think my heart rate went up at first, then I became so paranoid that there was something wrong with my heart and started noticing ever small thing, then we started our family and that's when I noticed the heart rate increasing a few months after I had him. Just frustrating not knowing what t is and I know we will prbly find out once I start my protocol. Just need patience.
  10. Hey y'all! Just wondering how do you tell if it's pots or just deconditioning since they both mimic each other greatly?? My main issue is my tachycardia when standing up and my blood pressure is low. I'm on midodrine and that helps and starting the pots protocol in the next few weeks. Thanks and hope y'all are having a great weekend!
  11. Sending prayers that this will be a source of healing and improvement for her.
  12. Yep! Anytime the weather changes or storms I feel my symptoms acting up especially the anxiety part.
  13. Heart rate is my biggest issue. There are days right now just standing my heart rate will go 160-170 easily. If I can get that back down I will feel like a new person I believe. I took my son to the trampoline park and thought I was going to die before we left. You guys are giving me such optimism for this protocol. I would love to see Pikes Peak so much, one of my best friends is stationed out there and I'm hoping to visit her when we make our next pcs. I've just been terrified that the altitude would kick my butt. Do you guys still work out when you are sick or do you have to start over after the illness has went on its way?
  14. That makes me feel better that i shouldn't have an issue with the elevation. Humidity is awful where I live so I'm hoping when we move to the dryer climate I see improvement as well. Currently right now all I do is chase my 2 yr old around the house and I will take him for nightly walks and our 2 Danes, as long as the heat isn't bad. So I get some exercise but nothing like I need. I'm praying that the protocol doesn't completely set me back but I have to push through it no matter what. I am currently living back home with my parents because my husbands job takes him away so much and I need help at certain times. I am paranoid about living in a city where we have no family and friends and him being gone and if an emergency happened no one would be there to take care of my son. We are getting ready to make our move in about 5 months so I have to find a way to overcome this and function like a normal person again. I don't want to hold my husband back in his career(military). If the rehab doesn't make a huge improvement then back for more testing I guess. That's great you are doing PT twice and riding the bike. I pray you will be able to start the protocol again and have good results. Yoga is fun I use to enjoy it. Are you on any meds for Bp? I'm on midodrine 3x a day 5 mg and it has been amazing. Not a fan of the goosebumps but I won't complain.
  15. I had the shot over 10 years ago but never had any side effects from it. I wouldn't think it would cause pots this far down the road.
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