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Everything posted by Lemons2lemonade

  1. In my opinion, dealing with pots has a lot to do with medications and discovering which are the best for you. For me, going through that process was really bad but in the end, i sort of got my life back and it was worth it. Sometimes things have to get bad before they get better is what someone once said to me....best advice i ever had. However, if you have pots denying it in my opinion, does not help. Sometimes, we come to a point where we have to make a decision of what kind of person we want to be, and for me, it was testing the waters and medication helped me significantly in the long run.
  2. Dave, I am very glad that i gave you hope. But that outlook is not any easier for me. What is different is trying. And i try every single day. And that is what keeps me going and functional. The moment you quit is the moment you fail as far as i have learned with this disease. And IMHO you have two choices...can or can't. Pots feeds off cant's. I can't go out in public, i can't walk here, can't can't can't. But there are things that i have learned from pots innately which made me discover myself more intimately than anyone ever could. I CAN. AND I WILL. Those terms so easily spoken by many are
  3. As people who are only partially conscious half of the time, is this the world we live in? And is it a wretched gift to bear? http://en.wikipedia.org/wiki/Astral_projection I hate Pots so much. I hate it more than anything in the entire world. I live in a much different world than most. In fact, half of the time, i feel so jaded from reality i wonder if i am really "here" anymore. Yet, i am "here" because i feel fear and sense pain. But there are things that i do not feel anymore. Like comfort, peace, or humanity. My body functions--they are so weak and bleak..however, grabbing to the last bre
  4. It took about a month for my florinef to start working and when i began it things were really bad, but i changed up to it because things were getting bad in the first place. So not clear exactly what the cause was. It does make me more breathless, but i am more functional on it. But like others said, perhaps it is not the right one for you.
  5. Circadian rhythms denote sleep wake cycles and blood pressure trends. I nap not out of choice, but recognize that this effects my ability to function at a possibly higher level.
  6. Pheo, Hyperadrenergic, and/or pulmonary hypertension would be my guesses of things to ask your doc about. Have they considered doing a biopsy on this mass? Also, have you ever heard of clonidine? And, did they do a laying/standing i want to say its metanephrines but i could be mistaken (its the blood test they do for hyperpots) at mayo?
  7. yes, i read once that it is caused by a short electrical disruption from no enough blood circulating through the area, but it resolves itself for me. A holter would be good for ruling out pvc's IMHO.
  8. I got this FROM pots. Exposure therapy and SSRI helped me.
  9. I know, its like a constant uphill battle.
  10. This is how i view it and it helps me: The doctors have done all they can for me, and every test that would indicate something serious has come up negative. Sometimes in life there is no cure for what you have and you just have to accept it. For me, that means recognizing that everyone dies at some point and if this is my time then so be it. Most likely, though, i will not die from this condition--and i have to tell myself that. Every night before i go to sleep it feels like i am going to die so this is a common experience for me. To be honest, sometimes i kind of look forward to it because li
  11. I wear them on really bad days. I would say the help by about 5-10% which can make a huge difference when you are operating at 70%. Dr. Lenoards online is a great place to get them cheap.
  12. There are a lot of bad places to be feeling faint and i imagine in control of a vehicle at 30,000 feet is not the best. I don't even like driving down the freeway! Since you know the ins and outs though, perhaps you could get an administrative job with the FAA?
  13. happened to me all the time...ssri made it go away.
  14. I hate to sound like a broken record, but 29 bpm? Are you in good physical shape? If i had a nickel for every time a dr. asked me that when i went into a brady phase...arguments in the E.R...my favorite thing to do! LOL
  15. IMHO the more you feed into pots the more it feeds into you. I noticed that you have been making a lot of posts lately and not sure whether or not this is a chicken or the egg issue. For me, the more i let it into my life, the more it pushes its way in. At the same time, when it pushes its way in the more i feed into it. However, the old adage better to be safe than sorry is there for a reason. The reality of it is...we can be afraid of anything and anything is possible, but then again is it likely? These are the ideas that keep me out of the E.R. when i don't need to be there...i.e. am not in
  16. Hi all, please fill the fludrocortisone section if and only if you took it for more than a month. Thank you!
  17. Anyone taken these? If so can you please tell me about your experience. Also, if these lower blood pressure how do they help with precyncope? Thanks!
  18. I am also in the seattle area, these weather changes have been a little rough on me :/
  19. Dale, I am sorry to hear about what you have been going through. If anyone can sympathize it is those on this forum. We know what that tachycardia can feel like and how challenging your past few years have been. As with others, i agree, a tilt table test needs to be done. Also, there is a "poor man's tilt table" where lying, sitting, and standing blood pressure and heart rate are recorded. Dramatic changes in HR or BP can be a sign of pots. This is done by electrophysiologists. Also, in regards to jangle's response about a pheochromocytoma, there is a also a blood test to detect it though i th
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