valliali

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 atagonist back into my system.. man, I don't know if I can do it. I will if it's absolutely essential, but so far, everyone just seems really confused over my profile of symptoms. My POTS specialist highly doubts POTS, especially because she has checked my heart rate from laying down to standing a number of times and there's never really a change. Also, the other major reason I have decided against it so far is that my heart rate increase upon standing is very rare. Of all the times I go from sitting to standing, it probably happens like twice a week. So the probability of it happening during a tilt is super rare. If I were to take one right now, it would be negative. I'm sure of it. A heart rate increase upon standing is one of the symptoms lowest on my lists of frequency. For whatever reason, my insurance did not cover much of the ttt, and it took me over a year to pay it off each month. So I want to know it would produce results, and I feel like there's a really really good shot it wouldn't. Has anyone here had a negative one, then a positive one? Was it because you were like me in that the heart rate increases upon standing were infrequent, and you finally had a tilt catch it?

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. However, during the test, I did not have any major changes in heart rate or blood pressure. Nothing abnormal. I felt fine the whole test, both with and without the isuprel. I saw a POTS specialist, who said that the heart episode I had sounded like a PSVT, especially b/c sinus tachycardias don't just abrupty start and stop. She said that they can look very similar on a monitor. I have a hard time understanding how my cardio could have been monitoring the episode the whole time it occurred and missed that it could have been a SVT, so I'll always wonder about that. But overall, if that hadn't happened, my heart rate did not increase during the tilt. No one else can explain my sypmtoms, so POTS has just stuck all these years. I do sometimes feel my heart rate increase when I stand up. Sometimes I feel really faint and see stars, and sometimes it just feels like my heart races. Usually the feeling subsides really quickly, so it doesn't bother me much, but I definitely feel it. So I wonder, do you guys with POTS always have the heart increase upon standing? Have any of you not had a positive TTT, but do have POTS? Do your heart rates increase upon standing only sometimes? I have many, many symptoms, but the increase in hr upon standing, and even moreso the dizziness upon standing, are so much rarer and have small significance in my life. Would you guys with POTS describe your heart rate increases upon standing as one of your defining symptoms? Thanks so much.

rama, do you have a publication about the antibodies in IST? i have ist as well as extreme sensitivity to adrenaline, so am curious...

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 the other way. So I'm not sure I'm ready to pursue the docs yet, since who knows if it'll ever happen again. Hopefully not. I really appreciate you all sharing your similar stories. Though I am sorry you go through this too, it makes me a lot more comfortable to know I'm not some freak with these problems, though I often feel that way. I have read up a bit about it, and it sounds most like perhaps I, maybe we, were having some kind of vasovagal presycope. Though I didn't, during my episode, feel like I was going to faint, nor did I feel dizzy, other patients have wrote in to these internet doctors with similar complaints and were told it sounded vagal. And in fact, one doctor even said that it means that the patient has strong vagal tone, which is good. Ha! To think that feeling like that is a good thing! But, the dropping heart rate, cold sweats, turning pale, blurred vision.. all part of it. So that's a possibility. I am not really sure why it gave way to a panic attack, other than the fact that I am very sensitive to adrenaline and perhaps my body was shooting some out to compensate for the slowing down. I am definitely in some kind of flare right now. My right hand joints are swollen again, which hasn't been the case in like over a year. Not really sure what's going on!

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 on the verge of a panic attack, if you know what I mean, because my heart rate is high and I am sensitive to adrenaline. But today it was like my body systems were just shutting down and everything slowed. The coldness and paleness, it's just creepy. I suppose I should see my cardio again, but I am sooooo tired of hearing, "well, we don't know, maybe it's stress." I sure hope this is a one time thing, but I have just been feeling "off" since then.

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.

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 my cardios have been pretty worthless, so I am hesitant to go through all that again. Especially b/c this is the first time it's happened, I doubt it would be captured on a holter. Just very scary, and I wish I knew what was going on!

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, which keeps my heart rate around 160-170 during exercise. i'm happy with this since without meds, my hr would be around 220 or so. so today i was doing my usual exercise, and my heart rate, as always, was around 160. the gym that i go to is usually a little warm, so like always, i was feeling pretty hot and sweaty. at around 33 minutes, i all of a sudden started feeling really cold both internally and externally. then i started feeling incredibly tired, like a tired i haven't felt before. i was really checked out, couldn't focus on anything and my vision was quite blurred. my heart monitor said that my heart rate was at 123. i haven't seen it that low during exercise but once, which happens to have occurred only a couple of weeks ago. so very unusual. i kept going because i thought i needed to "up" myself, but it only got worse. the tiredness was unbearable, and i just felt really really bad. i looked at my heart rate again and realized it was around 110. i stopped immediately because this is just plain freakish. i hadn't slowed down or anything, and my heart rate doesn't get down to 110 after exercising for like hours afterwards. my boyfriend, who wasn't far from me, came rushing over because he said that he had noticed that i was like white as a ghost. he said he could tell something was wrong from across the room. i went and sat down, and just felt so horrible. i had a panic attack which i also haven't had in over a year. when i left the building i continued to feel just so unbelievably tired. my muscles felt incredibly weak, like i didn't have it in me to even take a step. i also felt really nauseous. i was sure i was going to hurl, but didn't. this all lasted for another half hour or so, and then i started to feel more myself, albeit still very exhausted. has anyone experienced anything like this? i don't even know where to begin in understanding this. it is so new to me, and unlike any of the symptoms i have experienced. when i exercise, my greatest fear is my heart rate taking off, never have i worried about it slowing down or feeling like my body is shutting down. my symptoms sound similar to those listed under exertional syncope, but i didn't feel like i was going to faint at all. and the feelings lasted quite awhile. i have had presyncope before, and this was very different. i just can't imagine what else could have gone on. heart arrhythmia? do i see someone about this? do i wait and see if it happens again? if i can even bring myself to exercise again. do you guys have any thoughts? thank you so much for listening.

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 would one would be better without? I don't really know, there is no right or wrong answer, but you have to know that the decision is entirely yours and shouldn't be based on a future relationship. Also, I agree that it may be worth looking into other forms of birth control if you find the decision to be very difficult to make.

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 lighting...

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 the most horrible pressure in my head, with whooshing, and seriously cannot ever go through that again. My father is sick on the east coast, and I want nothing more than to be able to go home and at least visit, even if I can't move there. But I really can't. The symptoms are that intense. And there is nothing I can do for it because I don't know why I react so freakishly strong. I have a lot of other triggers to my symptoms, like caffeine, cold weather, stress, etc, but nothing even comes close to the intensity with how I react to the weather.

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 slowed. i usually exercise during lunch time, as my beta blocker allows me to do so. without a bb, my heart rate would quickly reach the 220s with little stimulation. on the bb, i can do a 40 minute exercise and keep my heart rate between 160 and 170. still higher than it should be, but i'm not totally uncomfortable and the exercise does make me feel better usually. never, ever have i excersised and my heart rate be below 150. no matter how many beta blockers i take, i have never seen my heart rate not quickly shoot up to the 150s. which has been okay with me since it's a lot better than 200 with crazy palpitations. today, however, during exercise, my heart rate didn't go over 120. i did the same intensity and work out that i almost always do. i felt like i couldn't breathe, and even an hour later, still don't. my chest is very tight. i also have an intense pressure in the sides of my neck and my ears keep clogging and popping. i'm also eerily pale. has anyone else had this? i am not for sure that the reaction i had today is due to humidity, since the humidity usually increases my hr a lot. i just know that i am freakishly sensitive to it. so much so that i refuse to visit my family on the east coast because i truly believe that i could die my symptoms become so intense. which is really just sad, but i can't do it. i have tried to research this issue, but i usually only find information linking pulmonary problems and arthritis to humidity and low pressure systems. Never what I have experienced. Anyone else? Anyone know why????? My doctors look at me like I am nuts.

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 wouldn't have to deal with so many cloudy days! Crazy! Also, when the weather is cloudy, my heart rate skyrockets, usually around to 160-170 at rest. I am sorry you have to experience this discomfort. Unfortunately all I can do is share in your pain, as I too have no idea what the cause of these symptoms are. I am extremely sensitive, I think, to low barometic pressure, or sudden changes in pressure, and for some reason it sends my nervous system haywire. As far as the head pressure, no ideas. I don't experience at all on bright sunny days, and then super intensely on cloudy days. Makes no sense to me!

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 this thing. I'd say the weather is my number one trigger and enemy.

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 encouraged me to take even more beta blockers, though I had already taken like 200mg of toprol (my regular dose was 25). Likewise, when I moved from CA to MD, I immediately and dramatically noticed how horribly I felt on the high humid/rainy days. Like I was dying. I went from being able to function in CA to bedbound on the east coast. My heart was constantly racing, couldn't breathe, and the head pressure, oh, the head pressure. My doctors brush off any relationship to change in barometric pressure, but I'm sure that's the cause. Does anyone else have this hypersensitivity? It seems like most people find the actual flying to be pretty tolerable. Like Rama, I also paid for my flying afterwards, and I remember even going to the ER the day after (which I definitely don't do often). But I'm pretty sure I recovered fairly quickly. I think that, since I've posted about this before, most people find that compressions and fluid helps a great deal and makes flying pretty comfortable. I feel like my extreme reactions to pressure changes is a bit rare, and hopefully a clue to the puzzle, if only I could figure it out!!!

I get the same EXACT feeling when my bb wears off. So uncomfortable.

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!

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've just never experienced anything even remotely like this. A pressure headache from sinuses, sure, have had them. This isn't even comparable. I did see an ENT when I initially became sick because of all my swollen cervical lymph nodes, and he did do a CT of my neck. Said my sinuses looked fine. However, this was before this symptom started; in fact, quite awhile before. I have thought about problems with my inner ear as well, but again, I'm just not sure it adds up. The pressure usually originates in my neck and head first, then comes the whooshing, then comes the building up of pressure in my ear. And then it will last for what seems like forever. I just have no idea what to do about this symptom. Thanks so much for all of your suggestions. I think an ENT might be the next best stop, especially because the neuro was pretty much worthless.

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 enough, it went away and I haven't had it since (it's been like nine months). No idea what triggered that, but I too was at an all time POTS/dysautonomia/whatever is wrong with me low. I have absolutely no reason to suspect that I have MG, but it is interesting you tested for the antibodies. I thought it was a really sensitive test - meaning most people who test for the antibodies go on to develop MG? That is not to scare you, as I really don't have a clue, but I am curious about the likelihood of your positive test corresponding to the eventual development of MG. I have read that the ptosis is often the first sign.

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.

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!

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't think i have intracranial hypertension either. i describe the feeling as though my blood has turned into tar, and it's built up in all my arteries and veins and it's pumping so hard to just get through.

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!

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 when I describe my most troubling symptoms, they are not at the top of the list. Which seems to make me an unlikely fit for NET issues in that sense, though I have clear signs that I am overly sensitive to adrenaline. I am also GREATLY helped by beta blockers, especially non-selective ones. The amount that a small dose of propranolol has helped me is quite dramatic. So I know that there is something going on with my NE and epi, but I don't know if it's necessarily the way in which they are processes or the way in which my beta receptors respond to them. I'm also troubled by some of the other symptoms that I have that don't match a profile for a solely NE issue. The bout of arthritis I experienced was just weird, as it sounds like your issues with ank spond are. You are fairly sure that they are related? The arthritis I had came several months after I started noticing changes, affected me pretty severely in the fingers, then went away. I also have enormous pressure in my head and neck, which I actually suppose could be related to NE if it is causing major vasoconstriction because it does feel as though my blood is unable to circulate and is just pounding through my arteries/veins. But beta blockers don't relieve that symptom at all. I also have not seen this symptom described when reading about NET, and it's probably my most severe one. I am not really sure what kind of doctor I need to see to investigate this further. I have mentioned it to several, and they don't know what I'm talking about. Nor am I totally sure it's worth it to travel somewhere for some more tests. What can they do about it? What do your doctors think about your ank spond and its relationship to your dysautonomia? What do they think triggered your problems? Have you ever tried an SNRI and had a similar response?

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!