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valliali

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Posts 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 everything going on here in california to completely bed-ridden in maryland. so, i said my apologies to my family, but realized that i really came first in this situation. the change was so drastic that i couldn't even just try to make it work. now i'm back in cali, and have come a long long way since those two months in maryland.

    it's amazing how much climate affects me. i think it has to do with a low pressure or humid environment. i want to go to veterinary school soon, but feel really set back by all the options i need to rule out based on climate alone. as if getting into veterinary school isn't competitive enough, i really only have a couple of options. but that is how drastically the climate affects me - out here, i can actually consider going on to school. on the east coast, there was no way i could even leave the bed.

  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 pounding heart. Usually, they last only a few minutes (though it seems like forever), but this time, it lasted for like half hour. Then we got into the air, and I actually felt great. The whole time we flew, I felt relieved of all my symptoms. However, again, as soon as we started landing, extreme anxiety and PSVTs set in. I was really really freaked out because normally I have to get up and pace or do something to move around when this happens, but we were forced to have our seatbelts on and couldn't get up. I was flying for business with a complete stranger, whom I had to inform oh by the way, I have this health condition and I'm pretty sure I'm dying right now.

    I haven't flown since because it was really one of the most uncomfortable things I have endured. I was on beta blockers too, usually taking 25mg Toprol twice a day, and they didn't seem to help. However, on the flight back home, I took 200mg beforehand and didn't have nearly as many issues, though I still felt the anxiety and some heart palpitations during take-off and landing.

    Reading this post, it sounds like others feel that the pressure changes trigger the anxiety and heart arrythmias? I have actually researched this a great deal on the internet, and have found NOTHING that suggests this. Does anyone have any ideas what is going on that causes this? Why would a PSVT be set off, with extreme adrenaline release?

    A lot of people swear by ensuring that they are hydrated before flying. And have no problems. So I hope the best for you!!!

  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 pressure has not been severe in several months, but at its worst, I am sure I will die. I feel the most unbelievable pressure in my neck and head, and it feels like blood clogged up in my arteries. I have no idea what it is, neither do any of my doctors. It's like the worst of my symptoms.

    I don't know that the metropolol would have been causing the brain fog - it should only target the beta receptors in your heart. But, nonetheless, beta blockers do tend to slow things down. Me, personally, I couldn't function without my beta blocker, which probably contributes somewhat to my brain fog (I am on inderal, a non-selective, meaning it blocks adrenaline from my brain too).

  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 sleeping. then began the tachycardia. i was a hard core athlete who suddenly couldn't walk without my heart beating out of its chest. then came arthritis in my fingers, which went away just as suddenly as it came after about two months, and well, the rest is history. i developed heart arrythmias, vision problems, swollen lymph nodes coming and going like everyday, extreme fatigue, GI issues, and so on and so on and so on. but, i can definitely relate to your onset, mine was exactly the same.

    all my symptoms began two weeks after i returned from living in africa. i went from insanely healthy, hadn't had even a cold in probably four years, to debilitatingly ill. i was only 23.

    this has been going on for two years, and i have a team of docs at a major university hospital who all keep talking about this infection or virus i had that caused all this, but no one knows what that was.

    i decided to get the igenex testing for lyme's done, which came back indeterminate. i plan to see a llmd, but i am very skeptical. i do not doubt for a second that lyme's exists, but i think i hear about twice as money stories of people on antibiotics for years with no significant improvement than i hear stories of people who get better. i tend to think lyme's is overdiagnosed, or it is true that it causes a chronic immune reaction, like chronic fatigue, rather than an active bacterial infection. however, though i am skeptical, i am willing to believe and do anything to get better so i am open minded to the possibility. i just don't want some fringe doctor to tell me i have lyme's so that he can suck me dry financially while telling me something i want to hear....

  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 symptom relief that i was functioning well at all. thank god i requested a switch-over to propanolol. i will take this drug the rest of my life if i have to.

  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 come back.

    so, the rheumatologist thought this was an interesting presentation, but didn't feel like there was much she could do since i no longer have the issue. but she did say that this is not something she would expect to see with an ANS dysfunction.

    so i'm wondering if anyone has had this, or has any idea how this would fit with an ANS dysfunction? i do not have a diagnosis other than a "POTS-CFS-like syndrome." but, i don't have pots and i don't have cfs. so i'm continuing the quest to find a diagnosis, and i'm trying to now focus on the symptmos that seem inconsistent with an autonomic dysfunction. that's why i'm looking for any insight into this sudden, short lived arthritis...

    thanks!

  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 an athlete for a division 1 sports team in college, which even won the national champs, so working out was basically like eating and sleeping to me. i refused to give it up, and all my doctors told me how great that was. well, eventually i realized it was causing way more harm than good, especially because i was pretty much brutally suffering through work-outs. my heart rate would be in the 250s the whole time, full of arrythmias. i've only recently begun to work out again, only this time with slow and steady as my motto. but any doctor who tries to suggest that exercise is a CURE warrants a second opinion, as i believe. i would definitely urge you to try to find a doctor who specializes, or at least greatly understands, autonomic dysfunction and its many causes. remember that POTS and CFS and FM are just names of symptoms - they don't explain causes at all. you have every right to want to continue to investigate your causes. i travel two and a half hours to see a team of five doctors (which is a lot of traveling, money and very exhausting), but soooo worth it. though i still have no answers:)

  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 have found a low dose of inderal to not only help my heart rate, but has almost completely given me my "real" personality back. i just wish i had found it two years ago!!

  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 helps me a great deal, but i can't rely on that forever. i need a more sustainable solution.

    also, i think it is important for me to search for causes because i don't have a diagnosis. i know that i have autonomic dysfunction. but i technically don't have POTS. my official diagnosis is a "CFS-POTS-like syndrome." so, as long as i don't have a diagnosis, and doctors don't understand what is going on with me, then i can't work towards any kind of solution. and the flushing, being my first symptom and one of the most drastic physiological changes i have experience, i believe can point to a major key in this puzzle. plus, finding out whether or not flushing is caused by blood vessel damage (as in rosacea) versus mast cells in MCAD is a HUGE difference with very different treatments. but both can be treated to a great extent. so, i appreciate everyone's advice to accept this as it clearly causes great anxiety, and you are totally right in acceptance is a huge part of coping with this entire illness, but i also felt like i needed to explain why i am centered on finding "the cause," or at least a diagnosis, though i know i may never will!

    again, thank you all for sharing your stories with me. you must be very very strong and confident to be able to accept the flushing!!!

  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, and it develops gradually, sometimes over decades. mine was over the course of a couple of months, and then i was faced with a burning red malar region for ten hours or more. it is related to a temperature change only, meaning i only get the flush when my body temp is coldish, then becomes warmish. so, for example, if i am in sweatshirt weather, my body temp is usually around 97 degrees. if i am in sweatshirt weather for a little while, then move into t-shirt weather, my body temp will shoot up to around 99 degrees, within minutes, and i'll turn burning red and hot. this lasts for HOURS!!!!!!! again, that seems to fit a trigger of rosacea, but i don't know about the sudden body temp change.

    most of my doctors have no idea what is going on. some of them it sounds like it could be something like rosacea, others have said no. so i went to a derm in my city who was recommended on the rosacea forum, and he told me i absolutely don't have rosacea, and actually made me feel like a total idiot for even considering i did. he said it is clearly an autonomic nervous system dysfunction.

    however, i don't quite understand how he can say this. how is it so clear? do others with ANS dysfunction flush for ten hours with a bright red burning pain? is that a normal symptom? i often see flushing listed as a symptom, but this can mean so many things. this can mean a thirty second hot flash type of flush, or a ten hour flush. these are very very very different. i don't really hear too much about people experiencing the same kind of thing i do.

  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. 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????

  14. 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.

  15. 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 of my reaction.

    i do believe that this reaction was in part due to psychological triggers, like being afraid of the symptom. but, the way my body reacted to this fear was out of control, definitely not normal.

    and like many of you, i am NOT an anxious person and never was. ever.

    in fact, the social situations reaction was one of my first symptoms. and it floooooored me because i one day went from super outgoing to having panic attacks when someone asked me a question.

    i am, recently, getting much better. i attribute it to propranolol. i feel like it has given me my true personality back. it has helped my facial flushing a great deal, which has helped me rid thoughts while talking to someone of my fear of turning red. it's also just calmed the adrenaline down. i truly feel like it is the only thing that has given me my life back in the last two years. i feel more like myself personality wise than ever before.

    but i still have reactions like this for no good reason.

    once, i tested super low for normetanephrines, the metabolite of norepinephrine. this could mean that i was not metabolizing NE, which means more of it was being released into the blood stream. however, i not too long ago had my plasma NE levels tested, and they were normal. so i am not sure of this connection yet, and i have posted about the low normetanephrine levels before, but no one else seems to have had that result.

  16. 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.

  17. 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. can't win!!!!!!!!!

  18. 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!!!!

  19. 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 flushing problem.

    i have no idea what causes it. i went and saw the best rosacea doc in this area, and he said no way to rosacea, and that i clearly had an autonomic problem. he told me the only cure would be to move to hawaii, florida, or southern california where the temperature is constant. he was an ***, but he at least acknowledged it was a clear case of autonomic dysfunction.

    i take 10mg of propranolol twice a day, which i believe has helped my flushing immensely.

    i am interested in knowing if this is mast cell connected, but i don't have other symptoms of mast cell activation (like hives, etc). i'm not really sure what else would cause it though.

  20. 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 are just not working properly???

  21. 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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