valliali

I see you have mast cell disorder - perhaps this is why???? Also, I notice in your diagnosis list that you have rosacea. Could this all be related? Is it possible your rosacea is a symptom of the mast cell activation disorder?

Well, I am always concerned about my heart rates, but unfortunately, the 200 range is nothing too uncommon for me. However, my heart rate only hits that high either while trying to exercise or during a surge in which I experience a heart rate that high for only a couple of minutes. What helps me is running my hands and face under very cold weather. Are you on a beta blocker? While I have never gone to the ER for one of these episodes (because like you said, we know what's worth), I would definitely speak with your doctor about it.

has anyone developed social anxiety as a result of their dysautonomia? i find that i have panic attacks in response to situations that would normally cause some anxiety. like meeting someone new, a job interview, etc. however, instead of just feeling a little anxious, i have full on panic attacks. i seem to skip the just anxiety phase. this has translated big-time into social anxiety. i fear having panic attacks, i fear appearing distressed or uncomfortable, and thus, i fear all social situations. so when i am in them, i can't help but panic. this is crazy to me because i have never had a social anxiety, ever. i was always very very outgoing and confident. i try to hide this from my friends and make up all kinds of excuses to never see them because i know they would be shocked to see how awkward i have become socially. i have read that panic attacks with a social anxiety is really rare. so does anyone else experience this??

hi, i get those exact same spells as well. only i feel tremendous amounts of "panic" or "doom" - do you as well? i do know that what i experience is not a panic attack, as i do have those as well, but it is completely chemical. in fact, the reason that i was diagnosed with pots was because i had one of these episodes immediately after my tilt table test, after i was lowered at the end of the isuprel infusion. i tend to have these episodes after my heart rate has been elevated, like from trying to exercise, and as it begins to slow down, it kicks back up to around 180-200 and i have all the symptoms you describe. i was sure i was having an svt, but my cardiologist had told me that, at least during the tilt table test, i was having a sinus tachy. so he diagnosed me with pots, despite the fact that i didn't have a rise in heart rate or drop in blood pressure during the test, because he did not see this as a heart problem, but an autonomic dysfunction. i doubt my diagnosis, because it is not technically "pots" and don't really know what is going on with me, but i do think that these problems are related to a sensitivity to norepinephrine. i have not tested for high norepinephrine levels through 2 urine tests, but i do have low normetanephrine, which means i am not really metabolizing the NE. have you been tested for this?? i don't have any suggestions as to how to stop these episodes, other than medication. i don't take any yet for them - tried xanax and i didn't like it, hoping to try klonopin next. fortunately for me, when they pass, i am usually only affected for about a day or two. if you are out for months, you really need to pursue further treatment. make sure you have all your neurotransmitters and their metabolites tested.

thank you all very much for your insight. this is a frustrating situation for me because i feel like the requests i make to pursue further testing are brushed off because i "have pots." but i don't really understand why i "have pots" when i have never documented a heart rate increase upon standing. this isn't to say it never happens. i do have memories of it happening, but sooo occasionally compared to my other much more distressing symptoms. i also have a few memories of everything turning black when i stood up and feeling really dizzy, like my blood pressure was dropping. again though, so infrequent. these are like the last of the long list of symptoms i would report to my doctor. i have an at-home blood pressure/heart rate monitor, and i have very rarely caught a heart rate increase upon standing. so yes, perhaps this is pots and for some reason the pots is just affecting my other symptoms much more than the postural change. however, i do have doubts, and i have had hardly any testing. i don't understand why i was immediately diagnosed with pots off of a tilt table test, when i didn't have an increase in heart rate or drop in blood pressure at all. i was upright for 20 minutes, and my heart rate didn't change at all, with or without the medication. in fact, my heart rate definitely doesn't increase the longer i stand. when i do experience some dizziness or faster heart rate upon standing, it very quickly dissipates. like in 30 seconds. it has NEVER gotten faster, only slower. i am concerned something else is causing autonomic nervous system dysfunction, which i definitely have an element of, but that i am being written off because pots is the end-all be-all diagnosis. it seems there are plenty of diseases/disorders that can cause dysautonomia aside from pots and i don't believe i am really being tested for any of them. anyways, thank you all for your feedback. i am going to see a pots specialist in december and perhaps she will be able to tell me if i sound like a typical pots patient. i do worry though that i am going to go down a very expensive pots path, when something else has been going on all along!

i'm just having issue with the fact that my heart rate has never really increased with postural changes, even before beta blockers. it didn't increase all but 10bpm on my tilt table! why then, was i diagnosed with pots? i am just wondering if the heart rate increase during standing is essential for a pots diagnosis?

thanks guys. no, i don't think i am recovering, because i have never had a period of increase in heart rate upon standing. in fact, the dizziness upon standing occurred like six months after i started feeling unwell. then i noticed the heart rate upon standing like eight months after i had become sick. like i said, it rarely happens in comparison to all the other symptoms i have, and that's how it's always been. i'll have like a day or two a week where i will feel dizzy and jittery upon standing, and can tell my heart is racing, but this feeling passes in like 30 seconds. from what i understand about pots, the heart will continue to be rapid for awhile after standing. the feelings i get during the postural change very quickly subside. the postural change symptoms are honestly the least of my symptoms!! which is strange because i have intense heart problems. my heart is rapid all the time, and increases very very quickly with little exercise. just not really during the postural change. i am taking beta blockers - could this be why?? the beta blockers don't seem to slow my heart rate down much, and they don't prevent my heart from speeding up really quickly upon minimal exertion, so i'm not sure why they would nearly completely eliminate a change in heart rate during a postural change. i am just not sure, and never have been sure, why i was diagnosed with pots. i was diagnosed with dysautonomia because of my rapid heart rates and because of the very strange sinus tachycardia response i had during the tilt table test after i was lowered. after they administered the medication, stopped it, and lowered me on the table and told me the test was done and negative, my heart shot from about 80bpm to 170. i am feeling more hopeless, even two years into all this, than i did when i first got sick and had no idea what was going on. i feel like i fit into NO diagnosis at all. i have a dysautonomia, it seems, based on all my heart issues, gastointestinal and anxiety issues, but i don't fit into any of the types of dysautonomias! ah!

does anyone here have pots, or has been diagnosed with pots, who doesn't have the heart rate increase upon standing very often? like, you have a ton of other symptoms, but the tachycardia with the postural change is probably one of the most infrequent?? i was diagnosed with POTS off of a tilt table test because i had an unusual episode of sinus tachycardia after the whole test. i did not have a change in heart rate or blood pressure during the upright tilt, however. i am questioning the whole diagnosis, and before shelling out a ton of money to visit the mayo or the likes, i am wondering if anyone else has also been confirmed as having pots but has a similar situation?

i don't mean to turn this thread into my issues, but i would like to ask some questions becuase you guys seem more knowledgeable than myself about this. i experience sudden episodes of severe pounding and rapid heart rates. this almost always occurs after my heart rate has already been increased, whether from anxiety or exercise or excitement, etc. i have IST, so my heart rate usually goes pretty fast under stimulation. however, these episodes i experience are very sudden, and usually dissipate in ten minutes. they are extremely debilitating. i had one of these episodes during my TTT. it was after the isuprel injection, after i was lowered and my heart rate started to slow down, that it suddenly shot up to 175bpm and was very symptomatic. i became very flushed and started to tremble. my cardiologist was there and watched the monitors for the four minutes it lasted. he said it was sinus tachycardia but said he had never seen that kind of reaction before. i find that i have so much doubt about this being a run of inappropriate sinus tachycardia because it comes on so suddenly and is incredibly symptomatic. it sounds more like a pvst to me. but shouldn't i expect that my doctor, who is rated one of the best cardios in my area, should have been able to differentiate between a sinus tachy and a psvt? or other type of abnormal rhythm? or are there svts that are very hard to detect and can be easily confused with a normal rhythm? i am on toprol, it doesn't help much though i suppose the frequency of these episodes is probably less than it would be not on it. but i still have them. thanks so much everyone. this is a very informative thread!

all of my dysautonomia symptoms actually started when i started the pill. i was having constant hot flashes and facial flushing, really intense panic attacks and heart issues. no history of any of these things, and i am only 24. i thought it was all hormonal, so after three months, i stopped the pill thinking i would go back to "normal." but then i found myself in dysautonomia ****. i tend to believe all my issues were somehow instigated by the pill. however, there is no research anywhere to support the side effects that i had, so i can't be sure. just be careful! i was on a combo pill.

i have similar issues as you do, such as the very strong aortic pulse and sudden episodes of not being able to fully breathe. i recently moved from the west coast to the east. immediately upon hitting the humidity of the east, i could not breathe. typically my breathing issues are sudden and transient, but on the east coast, i could not breathe on humid and/or cloudy rainy days. the pulse in my abdomen was so strong my whole body rocked with it, and i constantly felt like i was suffocating. my heart raced and palpitated constantly, and i had really really intense head pressure. i somehow think this is all related to my breathing problems. just don't know how. i'm more inclined to think i could have blood vessel issues or gas exchange dysfunction. do your problems worsen on humid/rainy days?

you may want to get your diaphragm checked out. it can become paralyzed, and the ans does have control of it. not sure what tests are needed.

i also suffer from extreme adrenaline rushes. i know that my normetanephrine and metanephrine levels are low - these are the metabolites of norepinephrine and epinephrine - which means that i am not really breaking down the stress hormones when they are released. have you all been checked??? a 24 hour urine test will show these levels. does anyone know or anyone's doctor suggested what causes the overreactive ANS? i am so sick of being told to take medicines to cover symptoms, but no one can offer me any explanation as to WHY this is happening. i used to drink so much coffee, exercise like crazy and i was an adrenaline junkie. all of a sudden, i am hypersensitive to it and any little excitement or scare sets me into a full on panic mode?! it doesn't make sense. something happened in our bodies, and i'd like to know what. anyone have ideas???

i had a really severe reaction the first time that i took it. heart rate and blood pressure increased a lot and i had a severe four hour long panic attack. i suspect that i have issues with norepinephrine, so i probably shouldn't have taken a med that promotes ne in the body. i have read that dr grubb uses ssris and snris in treatment so perhaps others find it very effective. just a caution though, my research on the internet made it seem A LOT of people who had taken effexor wished they never had due to withdrawal effects. it is famous for having horrid withdrawal, and many people say that they would have rather dealt with the symptoms that caused them to take effexor than deal with the withdrawal.

my resting heart rate was around 100, or in the 90s, and with beta blockers, the lowest ever was 85. the sudden drop seems really odd to me too, especially because i had not taken any beta blockers for over a month. i started them up again, and now my resting heart rate is back up to about 85. so what this is saying to me is that when on beta blockers, my heart rate is actually faster than off???? the sudden change got me freaked too. was hoping i was getting normal too, but along with the other million symptoms, it's sure not seeming that's the case!! hopefully it is for you!

That makes total sense. There is no doubt I have some kind of autonomic dysfunction going on. I am just afraid that with a diagnosis, now everything is being clumped into that box. Doctors don't want to acknowledge other symptoms because they're all POTS. But what if I don't actually have POTS? I have some really incredibly debilitating symptoms, so I know my level of dysautonomia is not really mild. Which is why I am confused as to why I have been diagnosed with POTS when there are clearly other more severe things going on besides the classic POTS symptom - the heart rate increase or blood pressure drop upon standing. My heart issues keep getting worse and worse, and doctors always tell me, "it's just POTS!" But that drives me crazy because I am not exactly understanding why I have been diagnosed with POTS. I have read many many publications and studies on POTS, and everytime I do, I notice that all the patients in the study had a positive TTT for increase in heart rate upon standing. My cardio cannot explain to me at all why my heart started racing after coming down from the isuprel infusion, which is fine, but then I feel like he should probably not have been diagnosing me either. Thanks for your insight. I do completely agree. Still very confused though.

My heart rate and blood pressure did not change at all!!! I was told that I have pots because it is the most common. But I cant help but shake that I had a tilt table test that was negative for the typical pots symptoms. I only had the odd heart response -sinus tachycardia at 200bpm immediately after the isuprel wore off - I have similar responses after my heart rate has been at a sustained level for awhile, so something with it starting to slow down causes it to kick back up. but this does not necessarily mean pots, no?? Is it odd that I am just now, over a year later, developing the more typical POTS symptoms? The fast heart rate upon standing? An increase in blood pressure when standing? Should these have come first in primary POTS? The reason I am asking is because I suspect I have something else going on but as long as I have a POTS diagnosis, my doctors write off the need for any other test or any other symptom by saying, "well, it's POTS." I am suspicious that the POTS symptoms are just now starting, and that I had a negative TTT for it, because it leads me to wonder if I don't have something underlying that is progressively damaging my ans... like lyme's... Thanks for the feedback guys!!

I don't think you should worry about MSA - you are right, it does largely occur in older men. But if you have reason to suspect you have general dysautonomia, like PAF, you should talk to your doc. However, I don't think you would be able to run or exercise if that were the case. These conditions typically involve central nervous system deterioration as well so you would have movement problems as well.

i am wondering if anyone was diagnosed with pots but had a negative tilt table test?? i did, until the end, when i had an episode of sinus tachycardia after the isuprel infusion. when i took the TTT, i had been experiencing symptoms for about eight months. however, a racing heart or dropping blood pressure was not one of them. hence, a negative TTT. but i was diagnosed with POTS from that heart issue. i think if i took the TTT today, then i would fail for having orthostatic tachycardia when upright. but i am wondering if in POTS, the tachycardia is one of the first symptoms to develop, or can it come later? i am seeking a cause of my dysautonomia, and want to be sure to rule everything out before accepting the pots diagnosis. i am curious as to why the orthostatic tachycardia is just now becoming a symptom, a year and three months into being sick. i have been really debilitated by so many other symptoms, but the one that makes POTS what it is i am just now experiencing. is this odd? did any of you have negative TTTs at first?

so funny you just posted this because i posted the same exact thing last week! like you, my heart rate has never ever been slow since being sick. for the past year, it has not gone below 85bpm that i know of, and at rest, is usually around 95. early last week, i had a similar episode that you describe. i had just eaten, and my heart started pounding really hard and i felt incredibly anxious. i thought that my heart was surely off to the races as it normally is when i feel that way, so i took my blood pressure and heart rate and it was 55. i was shocked. i thought surely something was wrong, but every day since then, my heart rate is now slow. it is in the 50s. i have NO idea why this happened. you are lucky that your cardio is taking this more seriously because mine told me that my chronically high heart rate every single day, every second for the past year has been due to stress. and now it's finally "normal" again. yea right. i tried to explain that i don't feel normal, in fact i feel worse, but he told me to keep taking the beta blockers and got me off the phone. i am still taking the beta blockers because i still have uncontrollable tachycardia and palpitations when walking about. but at rest, my heart rate is suddenly slow. i don't think that the beta blockers are affecting it at all. keep me updated if you learn any more about this. i am somewhat relieved that my heart rate is no longer too fast, because i worried about myopathy and such, but i am quite alarmed that this change happened so drastically. the morning that this episode happened, i recorded my heart rate several times and it was at its "normal" level of around 95. then just hours later it dipped into the 50s and hasn't gone back up since. so strange.

Thank you so much for your response. It sure sounds like what you are dealing with is incredibly unusual! My doctors are now suggesting that I have a form of progressive autonomic neuropathy, although I'm not sure they, and definitely not I, know exactly what that is. But I am showing signs of nerve damage, so they are a bit more concerned. Everything you said in your last post was incredibly insightful, and so true. Thank you so much!

So sorry to hear you are feeling badly. For awhile, my beta blockers worked like magic on me. I felt like my usual self, went backpacking in Yosemite, and did so many things that this disorder made me feel like I would never do again. I am so grateful I milked every second of feeling well on beta blockers, because just a few months later, they stopped working too. I am now completely frustrated because I had so much hope that I'd found an answer. I completely understand how devastating it can be. Hopefully you are just having a momentary down period, but will find much relief soon.

Thank you all very much for your replies.. and encouragement. I suppose I am still a "newbie" to dysautonomia, having only been experiencing symptoms for a year, but some days I feel sooo badly that I can't imagine even making it another year if this is the rate I am deteriorating. But I suppose it is very likely that I have simply not let the dysautonomia run its course, but I will eventually, and hopefully, find ways to manage the many symptoms. Meslissa- do you have MSA? If you don't mind me asking, how old are you? I have read that MSA is very largely found in older men. You said that you are a very unusual case. I am incredibly sad to hear that. I remember, just a year ago, hearing about crazy diseases and disorders that would randomly happen to anyone and thinking, "that'll NEVER happen to me." Since becoming sick, I have certainly appreciated the fact that no one is spared from these awful conditions, and they have become so much more humanized. Now when I hear about really random diseases, I feel so sad for the few people who actually do becoming sick with them. Sorry, I am going on and on, but at 24 years old, all of my peers are a lot more concerned about their party habits than their health statuses. I get it because I was there only a year ago, but I'm certainly realizing how fragile life is. Perhaps I feel a bit too young to be learning this lesson, but in many ways I am very grateful for it. Thank you all for your support.

Good call, jump! I should have clarified. I have only taken 200mg of beta blockers a few times with doctor approval. I am prescribed 200mg a day, but have only been taking 25-50mg per day. I was just mentioning that even when I did take 200mg, which knocked me on my butt, my heart rate still didn't drop below 80. I haven't taken a beta blocker for a month now, since moving to the east coast, because I've had such trouble breathing in this weather. I didn't seem to have any side effects from stopping the bb, and I'm pretty sure I shouldn't be having any now after all this time. It seems entirely unrelated to beta blockers to me. I have also noticed that now, since my heart rate has suddenly decreased, my blood pressure is now increasing dramatically. Normally when I stand it drops, now it is increasing from a typical 90/50 to about 135-140/90. Is this odd?

Thank you all so much for your replies. My heart rate is still wayyyy lower than it ever has been, but it is in the 50s so I know that this is not alarming for any immediate issues, especially since many of you experience heart rates in the 40s and even 30s. I am still a bit concerned though at how suddenly this came on. Two days ago, my heart was going along its business at a resting rate of 95, frequently jumping up to close to 200 with any type of movement of excitement. This has been "normal" for the past year. Then the day before yesterday, same thing until the afternoon when my heart started pounding really hard, and I felt panicky so I assumed I was having a panic attack, and I took my blood pressure and heart rate because I was certain my heart would be going rapidly, as it usually does in response to panic. It was in the 50s. And it is still in the 50s. When I move around, it continues to accelerate into the 100s, but upon resting, immediately goes back to the 50s. This has me in a bit of a pickle because it is so sudden and so unusual. I am worried that something happened to my heart that has done permanent damage. Can something suddenly go wrong with the electrical signaling - for good? Or something to the sinus node? I am reading a bit on sick sinus syndrome, and it is terrifying. I am just not sure that it can come on all of a sudden? I really want to take my beta blockers, as they are the only medication that gives me a bit of peace from these symptoms, but have not taken them since my heart has slowed. I am worried to continue on them if I am having a serious heart problem.