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Everything posted by valliali

  1. Thanks potsgirl, I have considered redoing the tilt, and haven't ruled it out, but so far haven't done it. The main reason being that I am terrified of having another heart episode like the one I had (which I believe was a PSVT). I don't know if I can be strapped down on my back again while my heart feels like it is going to burst out of my chest. It was the worst experience of my life. I have no doubt that I have sensitive beta receptors, as I can't tolerate caffeine or really any stimulation that vamps adrenaline, and I do really well on beta blockers. So the thought of putting a beta atagon
  2. I was diagnosed with POTS two years ago, though I have always doubted my diagnosis, largely because I have episodic joint swelling and swollen lymph nodes. I was diagnosed after a TTT, in which, at the end of the test and after the isuprel infusion, when I was lowered and my heart rate was coming down from where they maintained it (around 125), it immediately shot up to 170 and for about three minutes it was pounding forcefully and rapidly. The cardio performing the test said that it was sinus tachy, so it must be some kind of dysfunction of the ANS that caused it to just suddenly jump. Howeve
  3. rama, do you have a publication about the antibodies in IST? i have ist as well as extreme sensitivity to adrenaline, so am curious...
  4. Thank you all so much. I have considered a stress test before, but I have found all these tests I've done to be basically worthless. My symptoms are so sporadic and isolated, it's impossible to predict whether or not they will occur. Then, of course, when I'm actually wearing the holter or on the machine, I'm fine. And I end up looking like a crazy person insisting to my doctor that my symptoms are real. Ugh. I know you ALL know what I mean. The episode I had yesterday was the first time anything like that has happened. Never did I think I'd be worried about my heart rate DROPPING! It's always
  5. Thanks guys, I really appreciate it. I actually don't think the heat was an issue, as I tend to do WAY better in the heat than in the cold. Dry heat that is. And after the episode happened, I felt a lot better sitting in the heat. Wierd huh? I had an echo done a year and a half ago, it was totally normal. It did say "upper normal PA pressures" on it which made me nervous about pulmonary hypertension but my cardiologist told me not to worry about it and my levels were normal. I believe I have a PSVT and most of the time my heart rate is way too fast. When I exercise, I usually feel jittery and
  6. I was also tested for a pheo, twice, negative. I rarely turn really really pale like this. It was like my whole body was just shutting down. I honestly thought I was just slowly dying.
  7. Thanks guys. Did your heart rates also drop when this happened? And did it feel like a really strong "episode", like an accumulation of symptoms suddenly? I am also sorry you have experienced this because it is quite uncomfortable. I have done a bit of reading about exertional presyncope, which sound like a lot of the symptoms that I had (cold sweat, blurred vision, lowered heart rate), but at no time did I feel like I might faint. I didn't even feel dizzy. It was just the extreme tiredness. I am concerned that it could have been my heart, like a heart arrhythmia that I haven't had yet. But m
  8. i had a weird episode of symptoms today, unlike any other that i have ever experienced, and i'm hoping someone may help to shed some light on this. i am not really sure what is going on, as i felt like i have been improving, and i haven't seen new symptoms in like a year. now things are going haywire. everyday during my lunch break, i exercise for 40 minutes. the sheer fact that i am able to do this is a far, far improvement from where i was a year ago. exercising is not usually comfortable to me, but in the end, it makes me feel better. i take a beta blocker an hour or so before i exercise, w
  9. Hi, I agree with what everyone has said here, but I would like to add that my personal belief is that if you choose a permanent birth control, that doesn't mean you need to be child-free. No, you cannot have your own child, but there are many needy children who need loving homes. If you, later down the line, meet a long-term partner, you guys will not be without the option to have children. Also, I often have to question a man who will not pursue a relationship with a woman who cannot have children. If he doesn't love his partner more than his need to reproduce, is that a selfish quality that
  10. Hi, I get this exact thing too. Only mine are short-lived; just a few seconds of the "internal" dizziness feeling, then the pressure in my head. I have never fainted before, so I wonder if this is the presyncope, but it seems different than I would expect. Also, my blood pressure is always normal too. Not really sure what is going on, but I do take beta blockers so that may contribute. Though, it has definitely happened when I haven't taken them too. My episodes come out of nowhere - I can't really put my finger on any trigger. I suppose I notice them more often when in stores with fluorescent
  11. Thanks guys! So it sounds like others have a strong sensitivity to humidity/low pressure as well... I suppose it is quite common in POTS, I just wish I could understand why. Doctors give me that 'oh boy, we've got a crazy one' look whenever I even suggest that I am worse off in certain climates. But the reality is that I have NO doubt at all that my symptoms are triggered by humidity and low pressure - the worst in that combination. I cannot find any explanation for it, and really wonder why this happens. I feel like if I could better understand it, I might be better able to treat it. I get th
  12. i am wondering how many people are affected strongly by humidity or low pressure? and how? i had to move from the east to west coast because i was so horribly affected. i live in CA now, where i am drastically improved from the east. the humidity and low pressure systems send my sympathetic NS into major overdrive, so i often have seriously high heart rates with runs of PSVTs, a crazy intense whooshing and pressure in my neck and head and ears, panic attacks, and many other symptoms. i do really well in the dry heat. today in CA, it is muggier than usual. i found that my heart rate is suddenly
  13. Oh my gosh! I get the SAME thing! Sorry if I sound excited because boy do I feel your pain, but I have felt like the only person in the world with this symptom. When the weather is cloudy, I get the intense pressure with pulse in my head and neck. Mine is not triggered by exercise, but just a cloudy day will do it. It is the most unbearable symptom I have. I hear a constant whooshing in my ears and head, and my head feels like the blood is just collecting and will blow. I also get the sensations in my neck. the symptoms were so bad for me that I moved from the east coast to the west just so I
  14. I don't have pain, but the low barometric pressure also totally kills me. My sympathetic nervous system goes off the hook and I experience the most horrible pressure in my head, neck and ears, accompanied with a whooshing feeling and noise that can block off every other sensation in my body or sound. Ugh, horrible. I had to move from the east coast to CA just to escape the swings. Now, I deal with summers that make me feel a million bucks better and winters that dig me a nice big hole to jump into. I constantly tell my boyfriend that if we could just move to San Diego, I swear I'd be cured of
  15. I feel like my response to flying/barometric pressure is also a HUGE clue as to what is going on with me, unfortunately, no body seems to take it seriously. I took really short flights, and each time, the landing especially KILLED me. Sent me into a horrid PSVT for at least an hour, with a hr in the 200s and the feeling that my heart was going to pound out of my chest. I was traveling with a doctor I worked with, who I had never met before and was trying to be all cool around, but ended up having to tell him that I thought I was dying. He was like, whoa, your heart is out of control and encour
  16. I get the same EXACT feeling when my bb wears off. So uncomfortable.
  17. I can't handle the take off and landing at all. I've had serious heart issues at these times. But otherwise, I actually felt great up in the air. The landings especially are so horrid I won't fly at all. Which is really sad because I used to travel a great deal. It sounds like most other people on here though don't have major issues. Good luck!
  18. I have thought about seeing an ENT, though I think my problems are more vascular. It is really interesting to me that here in California, this symptom is SIGNIFICANTLY less than when I was living in the humid/low pressure environment of Maryland. Now, I can at least bear it. In Maryland, it was so bad, I honestly came to terms with the fact that I would have rather ended it all than continue to live with that kind of constant pressure. The intensity of this symptom makes me doubt something like sinuses. Though, I do have a deviated septum and have had sinus problems in the past, but again, I'v
  19. A lot of interesting suggestions here. After two years of being sick, and never having had this symptom, I moved from CA to Maryland to be near my family. Being in the humid, low pressure of Maryland SET ME OFF. I had symptoms I could have never even imagined, even on my worst days on CA. My worst was the head pressure, the whooshing and feeling like my blood was going to bust through my arteries and veins in my head. At that time, I noticed one of my eyelids drooping. It stayed like that for the two months I was in MD and suffering with these symptoms. I had to move back to CA, and sure enoug
  20. This is a very sad topic for me, as I used to even brew my own beer. Love a good microbrew. But yes, it affects me very strongly. Immediately, like before the dehydration kicks in. I think the dehydrating affects cause the tachycardia in me, but I am not really sure what causes the immediate reaction. I also find my lymph nodes swell up a great deal when I drink. I get a pressure in my neck, my head gets very dizzy, my blurry vision, and I feel totally spaced out. Haha, I know that I'm basically describing what it feels like to be drunk, but this is after even a few sips. Sad.
  21. yes, i definitely get this too. i feel a pulsating in my whole head, but sometimes it's strong in my temples as well. i'm still trying to crack this one as well!
  22. my blood pressure is always normal. it only happens somedays now, but when it is humid and/or cloudy, it is 100% certain it will happen all day, everyday that the weather is like that. i had to move from the east to west coast purely because of this symptom. i was also told i have tinnitus, but i have such EXTREME pressure in my head, ears and neck that it is not JUST tinnitus. sure, i hear the whooshing, but the sensations are so much worse. i recently saw the eye doctor who said i had no papilledema. because of this, and the fact that i never have a headache, just the insane pressure, i don'
  23. does anyone else experience a very loud whooshing in the ears with a lot of pressure in the ears, neck and head? i find it is much worse when i turn my neck to the side, and it is relieved when i straighten it. and it doesn't happen all the time. it is MUCH worse when barometric pressure is low and humidity is high. i had a head and neck CT scan, over a year and a half ago, but they were normal. anyone else? this symptom is intense!
  24. Hi Rama, The other unusual thing in my case is that my NE and epi levels were actually on the lower end of normal. From what I am understanding, a person with NET deficiency but still "normal" NE levels would be on the high end of normal. However, I also did not have my NE levels tested during the TTT. I have only had urine tests and one plasma test in which they were drawn sitting then standing. Also, I don't really have postural changes. Some days I do, but it's definitely not one of my most defining symptoms. Nor do I have much dizziness. Again, I go through periods with these symptoms, but
  25. Rama, do you know what some realistic tests are to test the NETs function? Tests one can have done without hving to enroll in a study or travel to Vandy or the Mayo? Have you had yours tested? I am not really sure I understand what the MSNA is and what it can tell you? Also, how can one tell if they have parasympathetic withrdawal? And lastly, is a NET deficiency/dysfunciton considered a genetic problem, or can it also result from something else (virus, lyme, etc)? Thanks so much for sharing your wealth of knowledge. I have a lot to learn!
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