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Everything posted by Lemons2lemonade

  1. I also check my pulse often as a nervousness thing. I don't know what i really expect to find as its been pretty consistent for the last 6 years with little to no tachycardia. But i notice that sometimes it beats harder and sometimes it beats weaker.
  2. I took citalopram/celexa and it was a godsend for sleep. I literally felt everything just calm down. It actually kind of scared me at first, but after awhile the relaxation of it was an incredible relief. Before that i was hardly able to sleep at all .
  3. Hi Holly, First off, i can totally relate to what you are going through right now and had a similar beginning myself. I went through 3 of the worst months of my life before i began to get control of things. I actually sat in a cardiologist office once and refused to leave until they helped me, at that point i was on the brink of consciousness from moment to moment-- palpitations and the whole shebang. Something that helped me a lot was biofeedback to stay calm. For me the ability to stay calm and remain calm was the first hurdle i had to cross. I also had to train my brain to reco
  4. Some good info on this: http://articles.mercola.com/sites/articles/archive/2014/10/21/gardasil-hpv-vaccine-adverse-reactions.aspx http://drblitshteyn.com/articles/Gardasil_and_POTS.pdf
  5. I am bumping this to go along with my update post for new members So glad to hear it helps others!!
  6. When the cabin pressure drops once the door is closed I get very lightheaded. I know it drops my blood pressure. So, I just take a nap and wake up when I arrive at the destination.
  7. If I take prednisone, which is slightly similar with more glucocorticoid properties, it drastically increases my HR...
  8. I did poorly with midodrine, and midodrine/florinef combo. I lasted 2 weeks on midodrine, withdrew from it and a beta blocker in the hospital and switched just to florinef.
  9. I think so! It has helped me a ton. But I don't do meditation like the typical way of maybe the crossed leg pose. I just do it within my brain calmly, saying ok, be calm.
  10. I agree this happens. It probably has something to do with the whole "autonomic dysfunction" thing as breathing is an autonomic function. In fact, when I first started getting symptoms I often learned that I was holding my breath. I would do conscious breathing for a few minutes and then it would go away. I think it's interesting though that this was happening to people before they were diagnosed it sounds like or their symptoms exacerbated...huh...
  11. I have been out of the loop for awhile. Last I heard Dr. Raj was saying pots is caused by autoantibodies. Just saw that he is in Canada now. What's up with that? What are the new ideas going on with research?
  12. Addie, Random question. Did you faint in WA? I actually saw someone unconscious at a stop light. Went and parked my car to run out and help them, but by the time I got there, they were gone!
  13. Hello Everyone, It has been very long since i have been on this site. But for those of you who do not know me, i was diagnosed with POTS in 2010. I spent the next 2 years in what i call **** and slowly worked my way out of it. I remember where i was then and how much hope it gave me to hear positive stories. I wanted everyone to know i am doing very well. Although, i am unable to jog or do strenuous exercise (next on the goal list) i am able to walk as far as i please without a fast heart rate or lightheadedness. Also, i have been working 40 hrs a week for almost 3 months now with very little
  14. Unfortunately, I think the florinef actually made my Shortness of breath worse. My BP has gone up around 20 points consistently. During my pots episodes it would drop down to 80/40 with a heart rate of about 160. Now i hang out around 110/65-80 which is normal for me. Florinef changed my life because it allowed me to change my life. It wasn't necessarily a miracle drug but it allowed me to get a hold of myself and the disease. Be sure they continue to test your potassium if you are beginning florinef because it depletes those levels. I tried food for a bit, which did not work (avocados, banan
  15. Hi Andy, Sorry to hear you aren't feeling well. I have been taking florinef for around 2 years now with good results. It has lowered my heartrate and presyncope. Make sure to get your potassium levels tested and eat lots of potassium rich foods as it can deplete these levels(which IS dangerous).
  16. Hello Everyone! It has been quite awhile since my last post so I am just checking in! I still stand by my theory that exercise is the best therapy for my pots besides medication (mine was fludrocortisone/florinef). Over the past year i have been on around 10 flights with no problems. And am now up to walking as far as i please--earlier last week this was around 10 miles up and down the strip in vegas. Then around 4 miles the next day in San Fransisco. I remember the day when i could hardly walk 6 feet to the bathroom! It is strange, i will admit that exercise helps--as i was in perfectly fine
  17. Have been reading up on this. It is caused by contraction of smooth muscle (the same ones in our veins that "aren't working") that lead to low BP. Wondering if our bodies are overshooting smooth muscle contraction to try to compensate for low bp. Therefore constricting our bronchioles (which don't need it) causing us to feel short of breath. Beta Blockers can also make this worse.
  18. https://en.wikipedia.org/wiki/Hydrogen_sulfide The hydrogen sulfide gas can be found in well water that is either contaminated with bacteria, in a volcanically active area, near pulp mills, tanneries, swamps/bogs and oil refineries. It is found in water typically by its sulfer like smell.
  19. I think the problem with people viewing me as being helped per se is a matter of perspective. In my opinion, in the end all it comes to functionality and what a person is capable of doing. My experience with pots is that the moment i give up hope is the moment that i lose the battle. I work, drive, travel (in airplanes too!), exercise, drink alcohol, eat what i want, go out in noisy places, walk anywhere i please with my friends, and mostly do what i want. To me, that is a success story. 2 years ago, i could hardly walk to the bathroom. Driving?! way too much of a liability. Exercise hahaha ye
  20. Pulling out my calculator...not so good at math so please correct me if i am wrong... out of 123 forum members: 83% experience lightheadedness 80% experience brain fog 56% experience muscle spasms 60% experience chest pain 55% experience chest tightness 85% experience fatigue 41% experience electric shock like sensations 52% experience sudden awakening in the night 41% experience excessive sweating 28% experience full syncope 74% experience presyncope 63% light sensitivity 63% sensitivity to sound 76% weakness 76% palpitations 59% feelings of panic 49% feelings like you are g
  21. Stress affects norepinephrine, epinephrine, and adrenal function. It absolutely has an impact on pots.
  22. dr leonards is a great place to get cheap compression stockings...love them. I would say they improve my symptoms by about 10%. However, i only put them on when my symptoms are at their worst as i want to train my body to be functional.
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