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Everything posted by valliali

  1. i live in sacramento, but find the california climate to be unbelievably better for the dysautonomia. i actually became sick with pots after i had just moved to california from the east coast. after about a year of living out here, i decided to move back home to maryland because my father has alzheimer's. after about two months of living in maryland, it became very very clear to me that i could not function in that climate. i thought that perhaps my body just needed to adjust, but it never did and i just became sicker and sicker. i went from functioning at a pretty good level considering every
  2. Hi, Flying is pretty much out of the question for me! I don't want to scare you though, because I have posted about this before here and on other forums and it definitely sounds like most people are okay with flying. I have always loved flying and have flown a great deal. So the first time I flew with POTS last year, I didn't expect I'd have any problems. However, it immediately became clear to me that my body was not fond of the pressure changes as soon as we took off. I had a PSVT, which for me, are VERY symptomatic. They cause EXTREME panic and adrenaline feelings, along with a super pound
  3. Hi Gary, Stopping a beta blocker so suddenly can be VERY dangerous, especially for those of us with arrythmias and prone to large blood pressure swings. You should taper off of them. I have severe cognitive dsyfunction/brain fog. It was actually the last of my symptoms to develop, coming on about two years after I got sick. Which is pretty odd, but I had always felt, no matter how unwell, that I still had my mind all there. Now, I'm pretty much in a constant state of detachment. I also have the feeling that my carotid arteries will burst, along with all the arteries in my head. That kind of pr
  4. hi gary, my symptoms began just like yours did. although i also had severe facial flushing in the mix. my first symptom was panic attacks, which were severe and numerous throughout the day. i had never had anxiety, let alone a panic attack, a day before in my life, and then it was like WHAM! sudden panic attacks all the time. i also began turning beet red, which again, NEVER happened ever. then began the shortness of breath. i felt like i couldn't ever get in a full breath, and i began to experience squeezing sensations in my chest. this was 24/7, not just with panic attacks. even when i was
  5. for me, at 10mg 3-4 times a day, propranolol has given me my life back. i went from not functioning to really functioning. in the matter of hours after taking propranolol. now, i work and take classes. the day before i started taking propranolol about five months ago, i couldn't have imagined being able to do these things. i actually just got a gym membership again too, and so far so good! the difference between me on propranolol and off propanolol is DRAMATIC to say the least. i had been on metropolol for a year, with some relief of the constant tachycardia and psvts, but still not enough sym
  6. one of my doctors recently indicated to me that she thought my history of a sudden onset of arthritis is very important to understanding what is wrong with me, but she didn't know what. the arthritis came and went like a year ago and i have not had it since. it came on really suddenly, only in my finger joints. they were swollen, bent and curled inward. i also developed these small subcutaneous nodules on a few of the finger joints which were excruciatingly painful to the touch. this lasted for a couple of months, then went away. and like i said, that was a year ago and the arthritis hasn't co
  7. hi michele - i experience nearly all of the symptoms you listed, my worst ones being heart issues and the pounding/pressure/pulse in my head and neck. i, however, did not have an abnormal tilt table test except for a heart arrythmia and i don't faint. but i do experience a lot of visual changes in conjunciton with moving my head, my eyes are never really focused, and i think i experience vertigo. i have been diagnosed with "pots-cfs-like syndrome." yes, that is my official diagnosis. answers a lot, huh?? i tried very hard for awhile at first, and still do, to exercise my problems away. i was a
  8. actually, my first symptom was a social anxiety. which was CRAZY because i have always been an incredibly huge people person. like my friends used to tell me that i needed to run as congresswoman because i was so great at shmoozing it up. then it was like out of the blue, i started feeling really anxious in social situations, i would turn red, etc. this whole thing came on so suddenly for me, which was shocking in itself, but definitely the change it made to me socially was the greatest shock of all. i think that social situations can simply overstimulate me, and my stress hormones go nuts. i
  9. very true, jump! when i first became sick, for like the first year, i was having debilitating panic attacks like three or four times a day. it was crazy!!! fortunately, that has completely mellowed out, and i'm proud to say i haven't had one at all in like five months, which is HUGE progress. but i suppose when i looked at this, i just thought about how "typical" my panic attacks were and was surprised not everyone else had the same thing. but i know how different we are, and how much things change over time, so i definitely understand what you're saying!
  10. thank you all very much. it is comforting to know i am not alone. i know the flushing is not what will kill me, and that it is part of who i am now, but it is incredibly disfiguring to me. and there is absolutely nothing that can rid me of the anxiety i feel about it happening. i am very conscious about the way i look, and unless i redo my entire upbringing and the last 25 years of my life, then the flushing is just absolutely going to devastate me as long as it is happening. that is why i am so focused on finding the cause --- because i have to find a solution, or a way to tame it. inderal he
  11. thanks for your response! do you know if flushing without mcad is pretty rare in POTS? also, is it true that mcad is very difficult to diagnose? i have had very extensive mastocytosis tests, and been told that my mast cells/histamine are all clear. do those tests also test mcad? this flushing is maddening. it seems very much like rosacea. except for a few bizarre things. it came on super suddenly, with no history of flushing/blushing at all. and it became very intense, very very quickly. with something like rosacea, it usually strikes a person who has had years of easy flushing or blushing, an
  12. i'm actually really surprised by the results so far! it says only six people (so far) have panic attacks, yet twice as many have flushing. i am an unfortunate one with both, but i read SOOO much more about panic attacks than the facial flushing. that's just an example, but some of the responses have surprised me. same with a lower than i would have expected blood glucose response. interesting poll!!!
  13. how severe is it? does it burn? how red is it? like more pink than usual or fire engine red? how long does it last? what are the triggers? and has anyone had a doctor offer an explanation for it other than a mast cell problem? can it be explained by autonomic dysfunction in itself?
  14. i can say that of all my symptoms of dysautonomia, fainting or pre-syncope is not one of them. except for after i eat sugar. i nearly fainted while crossing a busy intersection not long ago because i went out for dessert with some of my friends. what are the doctors doing for you now that you have failed the gtt?
  15. i think i would have similar reactions if i tried coffee again. but sometimes the brain fog is so bad, i'm almost willing to suffer those consequences just to be able to get through a work day. i hate that i have to make that choice - hmm would i rather panic, tachycardia and tremors, or brain fog so bad i just stare off into space all day????
  16. i am so with you ramakentesh. definitely the best for me too. and i totally notice the second it starts to wear off.
  17. that is interesting!! is the net deficiency from genetics, or is it a change that occurs b/c of pots??? like, can it ever go back to normal???? i am interested in getting the other metabolites checked. what is the study about olive leaves?? how does one get the leaves?? i am not sure why my normetanephrines are low. the enzyme that breaks down ne, the comt enzyme, may be at fault.
  18. i can relate EXACTLY to what you are saying, only, i have always been a very loud and social person, never afraid to talk to anyone, so i chalk up this drastic change to physiological causes and not merely shyness. and i suspect the same in you. my body just overreacts. anything that stimulates me causes the same symptoms all of you experience - rapid pounding heart, flushing, hot, trembling, can't breathe. it's horrible. soooooo horrible. pots made me a completely different person from the one i was. i was fearless, a leader, and pots made me terrified of people and social situations because
  19. i could have written your post, word for word, myself. the brain fog is killing me. i too have had my heart issues more under control thanks to bbs, but i am, at all times, totally checked out of the world. i can't stand it anymore. i just found out today that my vit d is low, so i just got supplements and can only help that rejuventates me a bit. i used to be very energetic, talkative, center of attention type too, so this is a HUGE change and it's not a good one.
  20. oh what i would do to be able to drink coffee! i used to looooooooooooove coffee, and then, when pots came, i couldn't even have decaf without the adrenaline surges, panic attacks, tachycardia, psvts, and flushing. i felt much much better without it. however, i have such intense brain fog and am soooo sluggish, i would kill for a pick-me-up. the brain fog has gotten so bad, i'm actually thinking of giving the coffee a try again. i'm just so terrified from previous experiences, especially with the heart arrythmias. but two weeks just floated by, and i don't remember any of it i'm so checked out
  21. Melissa, I am so glad you have found a diagnosis!!! I can second Melissa's assertion that Dr. Friday is incredible. I wasted two years going from doctor to doctor before seeing Dr. Friday who is world's beyond any other doctor I have seen. Anyone else in the Bay Area, or California for that matter (I travel three hours to see her), it is soooooooooooooooooooo worth it!!!!
  22. i have serious flushing problems... well i guess i can officially say i had serious flushing problems - they have been rather under control lately... mine started at the same time that i got sick. i never flushed, ever, before. then suddenly i was like red hot all the time. my symptoms resemble those of rosacea, greatly, only with just flushing. i usually flush from cold to warm temps, but also from stress, nervousness, excitement, alcohol, etc. when i was flushing really badly, they would burn badly and i'd be bright red for like eight hours. for the past several months, i have hardly had a f
  23. i also take propranolol. i take 10mg, two or three times a day. it is by far the best medication i have used. i transferred over to it from toprol. it has helped me wayyy better because it crosses the blood-brain barrier.
  24. hi, i cant really help much, even though i have a psvt too, but i can say that the pressure feeling you describe, i get in my head and neck. exactly how you describe. like too much blood. i know that is not my heart, but perhaps the same mechanism causing the pressure is going on??? it feels very vascular to me. so perhaps our blood vessels are too constricted or contracted in those areas? the pressure is my worst symptom. it is unbearable for me. i can hear the roar of blood in my ears, neck, head. it does not feel muscular to me, though that is what people suggest. perhaps our blood vessels
  25. also, if your tea is caffeinated, that definitely won't help your tachy!!! i used to drink green tea everyday, until i realized it was the cause of my daily runs of psvt, which were the symptom i HATED the most. fortunately now i am on beta blockers, but even without it, cutting out the caffeine alone really calmed down the heart.
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