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Just Flat Out Tachycardic.


cardiactec
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is anyone in here just flat out tachycardic with no other "real" ailments????!?!?!?!??!?!?!?!?!

i seriously dont understand why my docs cant get my rates under control while on so much beta. i really think and feel very different from you all because my rates seem to be the primary issue and it seems like all of you are just all brain fogged/light-headed and feel like passing out, or are!

my heart is just out of control and nobody is doing anything to get it down to normal rates cuz they all say "you have pots and if we give you any more beta blocker to try and slow you down, you are going to pass out, cuz the problem with pots is that the blood is rushing to your legs and your heart is doing what it should by compensating so you dont pass out, and if we hinder that compensation mechanism, you'll pass out". i have NEVER passed out and i thought that BP wasnt the problem with pots patients anyway? this is why i hate being lumped in as a POTS patient, cuz most days i really dont think i am - i seem very different from you all but because i have been diagnosed with pots, i am treated the way pots patients are treated, salt loading, volume enhancing mechanisms, etc,etc. well guess what folks?!?!? I'M NOT HYPOVOLEMIC CUZ THEY TESTED ME FOR IT, normal volume over here!!! ugh. this is so not pots, i swear. and no one is calming my rates down cuz their all scared that POTS will be triggered more by more beta blocker they give and i'll PASS OUT like "the rest of you". okay, pots doesnt even, CLINICALLY and technically involve passing out. yeah, it can happen, but that isnt the clinical criteria or underlying mechanism of pots. perhaps for NCS or POSTURAL HYPOTENSION (which they also said i dont have, but my pressure can still be like 85/60 standing, but i can feel fine with a pressure like that).

sorry to vent..................................................................i am frustrated. :)

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I'm so sorry for your frustrations. I don't know if I can relate or not?

I haven't been diagnosed. I'm on beta blockers for my Tachycardia but I still feel lightheaded and dizzy. Like yesterday, my heart rate was 120. I don't know how often it does this cause I'm tired of checking it every time I feel icky. Today my heart rate was 108. I don't know until the 11th what they are planning to do next.

Did you have a positive TTT for POTS? How did they dx you? We are all so different even though we can have the same symptoms. I'm sorry your feeling alone in your symptoms. I'm sure there are others who feel like you. I may be one of them? The reason I say this is cause I'm being treated for Tachy. I don't have a POTS diagnoses.

(((HUGS)))

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hey amby,

thanks for your reply....and sympathy.

yes, i was diagnosed with pots by TTT from a supine HR of 100 to 170 within 10 seconds of being tilted upright.

my rates are like yours, 110-120 if i'm not doing anything (home all day, etc) but if i go to work they can be up around 160's and that, i think is just not appropriate.....and it seems like no doc wants to deal with it because "it's pots" and i will pass out if they give me anything more to slow the rates. i dont think that is the wisest call to make. rates that high need to be controlled and just not passed off as a "pots flareup". i didnt know flare=ups lasted 4 years straight?? :)

did they diagnose you with inappropraite sinus tachy?

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Guest sonotech

Cardiactec,

I don't know if this helps at all, but originally (years ago) my ONLY symptom was the tachycardia. I had even been hospitalized for it. Over the years it has progressed and started to cause MORE of the "typical" POTS symptoms and has just gotten worse each year.

So, it could be possible that tachy is your only "symptom" right now even though there are other "signs" of POTS and that down the road you may experience more symptoms. Does that make sense?

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My first symptom was tachycardia as well. But after awhile even the fast heart rate wasn't compensating for the pooling and I developed dizziness. It's possible that your heartrate is keeping you from feeling dizzy, but if it slowed down, you'd have problems.

One way to test this theory may be to test the pooling in your legs. I heard of a test where they strap a cuff to the ankles on a TTT and test the pressure over time. If you have pooling, the BP in your lower legs will go up, from what I understand.

Maybe if you get this test done and it's negative (meaning no pooling), they'll be less apprehensive to up the dose of your beta blockers.

...I've got to say though, while I know you probably didn't mean anything by it, saying that we're "just brain-fogged" feels dismissive. Almost everyone on this forum has tachycardia when standing, and most of us have other symptoms that are very disabling, including, but not limited to, being brain-fogged.

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hey sonotech,

i do have some VERY minimal other symptoms, and actually, to be honest, the tachy doesnt even really FEEL like a symptom to me, cuz i dont even know it's going at 170 when it's that high. typically my knees just feel like their weak and i get sweaty. i think i have secondary symptoms being caused from the tachy, but i just cant believe that this tachy is from something they call "pots". that's just not good enough for me. i need an answer or at least someone to slow my rates down.

i cant believe how many people voted that they arent even on beta blocker and i'm on like coma tose dose amounts and my rates are where at "typical" pots patients rates are at WITHOUT beta, BEFORE treatment. (and mind you, most people who truly have pots cant really tolerate betas that well, so how am i tolerating 200 mg's of beta and not passing out like the rest of the gang with pots?? docs have told me that something doesnt add up, so they agree i'm in a league of my own, but nobody wants to do anything about it.

i'm just really frustrated that my cardio last week tried passing off the high rates as having to do with "stomach issues" (my gastroparesis) and "weight loss". i have literally dropped two whole pounds since i saw him three months ago, that's not a huge drop in weight, so that is NOT the cause of the tachy.........he didnt even want to do orthostatics on me when i saw him last week cuz he knew what the result would be, VERY TACHY. and he didnt have any treatment options to offer. there are trillions of types of beta blocker therapy, i've tried like 8 different kinds. i dont know why they just dont try another kind since this one isnt working? i guess it's easier to let me go on my merry way and hope that my rates just subside on their own or something, so they dont have to deal with this anymore? heh, wish i could do the same!

thanks for your reply and sorry i havent gotten back to your email. just been caught up on many docs appt's and all this frustration. i'll drop you a line later on today.

hope you are well.

angela.

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I know for a while I was only on a BB and that ended up causing me more tachy, due to the fact that my BP was bottoming out, so my heart would have to work harder to keep the blood getting to vital places...I wonder if you were put on a vasoconstrictor if your tachy would go down...?! Just a thought....Have you been on Midodrine, or anything like that ever???

Jacquie

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thanks dizzydame,

i'll check into that. i know they have run some sort of testing for pooling isses with me (they tied a HUGE cuff around one of my legs (the calf, not ankles) and inflated and deflated it (but i was supine the whole time they did it, so i'm not sure what they would see with that unless i was upright??). they did find that i pooled twice what normal people pool in my thighs and butt area. .................? dont know........maybe my rear end is just too big ?? lol. :)

hey jacquie,

yeah i have tried midodrine and florinef both. neither one helped the rates. i wouldnt expect them to anyway because my volume is normal, even though blood is collecting down in the legs and the "volume" sensor in the heart is THINKING i'm low volume because it is all down in the legs.

i know they are all just trying to increase volume even though i'm normal volume because the heart is still sensing "low volume" since it's pooling in the legs, but none of the vasoconstrictive meds have helped to slow the rates. i dont know, we'll see what mestinon does. i just started taking that a few days ago. i'll give it a month or so and go from there............

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persephone,

oh believe me, i think you are SOOOOOOOOOOOOOO right on this. inappropriate sinus tach. i have said this to my cardio for about three years and he keeps telling me that because the rates are POSTURALLY driven (that when i'm lying down my rates arent 170's-200's only that when standing) it is POTS. he also said that there is some overlap btwn the two which is kind of redundant to say since POTS is essentially an INAPPROPRIATE SINUS TACHY to an appropriate state (standing). it's all in the etiology. they just call people IST if they have ruled out all other contributing factors that could cause the tachyin including POTS (a posturally neurologic contributing factor). wheether or not they really see a substantial intrinsic sinus node abnormality in these IST patients is questionable -

my EP doc just told me of a patient he diagnosed with IST over pots, cuz from supine to standing her rate didnt change much, but then she just simply walked down the hall and her rates jumped from normal to like 160's. i personally just think that could either be a delayed form of POTS (she was upright, walking, etc) or that there is no difference whatsoever btwn pots and IST. who knows...........he said because when i go from supine to standing and immediately the HR's go crazy, that this distinguishes me from her IST.

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dizzy dame, just caught on to the last part of your email saying :

"...I've got to say though, while I know you probably didn't mean anything by it, saying that we're "just brain-fogged" feels dismissive. Almost everyone on this forum has tachycardia when standing, and most of us have other symptoms that are very disabling, including, but not limited to, being brain-fogged."

you're right, i definitely didnt mean anything by that and sorry if you took offense. i know you guys have tachy with all the listed above symptoms, i guess what i was trying to say is you guys have tachy WITH brain fog, light-headed, passing out, etc and i simply have TACHY. i dont feel fogged at all, thankfully, and feel sorry that you all (well most of you) do. that must be a horrible feeling and i am sorry you all have to deal with that.

i am just saying there's a huge difference btwn someone who is simply tachy at very high rates than with someone who is minimally tachy (rate wise, lets say without beta's tachy at 120-130) who is brain fogged and has a list of other symptoms to boot. perhaps the compensation with the higher rates helps to minimize all those symptoms you guys have and that is why i dont get what you guys get, cuz my rates are higher and compensating more? who knows what the difference is, i dont have a clue. but i know it distinguishes me from the rest, maybe not all, but the majority. this is just what i feel by observing the different polls and subject starters on this forum. yeah sometimes i feel woozy but that is a rare occasion. seems like you guys deal with this on a constant basis. i dont. and the times i may feel the slightest of what you guys feel, probably is because my rates are 200 even on all the beta i'm taking. i think there is like one other person who marked off having a heart rate as high as mine on a poll.

anyway, sorry if you took offense. i didnt mean it the way it came out. i totally sympathize with you and everyone else on this forum. we are all looking for answers, help, and hope. and any way i can try to offer any of those to you (answers, help, hope) , i will do my best.

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Hi. I feel so sorry for you because of the runaound you are getting.

I have two friends who developed "flat-out tachycardia" as you put it. Both are in the health professions (one a DC, one an MD). One suddenly had tachy at 200 which lasted for 6 months in spite of trying all wonderful natural things. The other had episodes over a 15 year period of tachy after eating, while standing, when bending, etc. (very POTSy like). Both had ablation eventually. Both are cured.

I finally saw the EP that the MD friend went to and he is starting to test me. He said that there are very few tachys which cannot be fixed. He is not a dysautonomia specialist, but I, like you, don't have the same symptoms as the others here. My lightheadedness started with the beta blocker. Reducing the dose really helped the orthostatic intolerance, but eliminating it brought the episodes back.

Different drugs help different pathway problems. The MD would stop an episode with verapamil, but the beta blockers made her too tired.

I found this great summary of the (non-POTS) possibilities. You may want to check it out.

http://www.emedicine.com/med/topic1762.htm

I really hope you get better.

OLL

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I just started out tachy, way before everything else kicked in. Any meds I took made it worse, standing made it worse, etc.

I saw an EP who diagnosed IST. He said my tilt was negative because I didn't pass out. (my pcp strongly disagreed with this) My tachycardia was my worst symptom. My bp and heart did rise, but because I didn't faint, I had IST. I did have a lot of fatigue I didn't recognize, because as you know, our body's just sometimes seem to adapt to things.

I didn't just wake up one morning sick. I had symptoms I just didn't see because i thought they were normal.

I had ablation in 2003 for IST vs atrial tach. They did find an abnormal area and fried the **** out of it. I applied for disability 2 weeks later retro to the day of the ablation. I worked a 14 hour day the day before my ablation.

Like you, I was working, not passing out, thought my only symptom was the darn tachy, I just couldn't get stopped. Since the diag of IST and my ablation, I now DO faint, have really serious brain fog, feel like crap all the time and have just had a pacer inserted for the damage done to my S-A node while "fixing" my IST, and live in a wheel chair.

My point is, I guess if I can even remember, sometimes we are foggier than we realize, you stated recently you had to stand and listen to a patient vent and didn't think you'd make it without collapsing, but you did. My guess is, you may be having a lot more symptoms than you are picking up on, like i did. I just didn't want to see them. my pee wasn't dark, so i wasn't dry, my fatigue was just fibro yada yada....

My bloodwork never shows dehydration either, but I can get 2000 cc's of fluid and not have to pee. If you are well hydrated, that won't happen. A nephrologist I saw said my volume is low, it's just that "normal" blood work won't show it. Like my periodic paralysis, my K+ can be low normal on a serum draw, but the problem is at the cellular level and therefore serum levels are notoriously off.

My warning is this, be careful what you ask for.....ablation was the worst mistake I ever made, having this illness. I haven't seen a positive post about ablation. That doesn't mean i haven't missed one, but I sure haven't seen one.

Also, how many different meds have you tried? I went through about 12 or so before I found good old atenolol worked better than any of the new state of the art meds. It's really cheap too, which helps as I am on disability now.

We all can and do have various symptoms, some much worse than others, some of us just fight through them till one day we hit a wall. Some are just not able to fight, some become unable to fight. Some get better.

My doctor said if I really wanted my gall bladder out, I could find a surgeon who would enjoy the challenge of taking me on. The same is true of an EPS. If you are convinced all you have is IST, there IS an EPS out there that will do it for you. Mine was kind enough to even tell me the worse that could happen was, I'd just be the same......Maybe the one you find will tell you the same thing....and maybe I did, I just didn't realize the same was so bad.

I do understand how you feel, your frustration, the thought that if you could just get that rate down, you would feel right as rain. maybe you would. I just wouldn't bet the bank on it.....I also do have a variety of other illnesses, which may or may not tie into this. But bottom line, even with those other illnesses, I was working fulltime until the day I got my "IST" "fixed" Just a heads up from someone who NEVER wants anyone else to have to experience this.......morgan

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hey morgan,

thanks for your response.

i believe IST and POTS are probably one in the same, for SOME people, for others there have been found more neurologic components such as neuropathies or lyme for the cause of their pots.

i truly dont believe in just IST. there must be some underlying issue going on to be causing the tachy in the first place - and usually, if it is a conduction abnormality, it isnt from the sinus node itself (which essentially is what they refer to as IST) but as you said they were thinking possible ATRIAL tachy, which as you know is different than sinus tachy. docs are usually good at picking up on the differences btwn these arrhythmias just by doing vagal maneuvers, carotid massages, valsalva's, med trials while you are in the rhythm you are in, BEFORE going in and doing an invasive EP study on you, as in your case. i'm sorry that you are sicker now than before you went in for an EP study.

i have never asked my doc to do an ablation but to simply GO IN AND LOOK at the conduction pathways. a lot can be diagnosed by just LOOKING at things and not necessarily just jumping for the fire gun (ablation). but they wont even do this on me, LOOK that is, because the tachy is posturally driven. funny too cuz my P waves dont look anything like sinus P waves, AT ALL. and the EP doc knows this. but once again, because this is "posturally driven", it's POTS. if i were tachyn out at 180 while supine, i'm sure they would look at the situation differently, but i'm not.......so.........were you tachy while supine too or just upright?

i have tried about 10 different types of beta and to no avail. none have helped, selective and non-selective. i am now on a beta that causes big risks for QT prolongation but they had to try me on it to tame my rates and take the chance of the QT prolongation aspect. it's not working to fix the rates though. my rates are still 160's at work. if i am at home sitting on my couch for the rest of my life than yeah, sure, the beta works great. rates are like 90. but what kind of a life is that?

i was referencing the patient and how i felt with feeling weak and sweaty, not necessarily feeling like i was having tunnel vision, brain fog, of passing out type feelings. i just felt really hot, sweaty, and weak - not the typical light-headed and passing out sensations people always say they get on this site. i know what you mean though with "forgetting" some of the symptoms you have, because it is almost like an escape mechanism. if you "forget" symptoms, then it's easier to deny the fact that you have them or have to deal with them. perhaps this is what i am doing, not sure, or perhaps they happen (the symptoms described above) are so infrequent, that i forget about them fairly quickly and so i truthfully, in all honestly, forget about them. i know when i'm at work, it is a lot harder physically for me - very fatiguing moreso than anything, and this is why i was trying to get disability (and still am) but i doubt it'll happen since i am proving them that i am capable of at least working part-time. they'll say "well if she can work part-time, she can work full-time". um, YEAH RIGHT!

why did your doc disregard POTS with you on your tilt just cuz you didnt pass out but had the surge in HR with upright tilt? cuz a dropped out BP/syncope has nothing to do with a diagnosis of pots. pots is diagnosed when there's a 30 beat increase or more in HR from supine to standing with little to no change in BP. so i'm not sure why he disregarded the POTS diagnoses on you just cuz you didnt "pass out" since that isnt a finding for a pots diagnosis in the first place..

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hey,

i can't believe they just do that! i hate doctors.

i don't get too tachy at the moment despite stopping my paroxetine, but last time i was in hospital i was having really bad tachy for me (155 lying down) they saw this on a telemetry and still said hat this was normal for people with pots and that they wouldn't put me on beta blockers because it would make my pots worse!

i dumped that doctor and now i dont have a cardio, so if i get sick again i'm screwed!

cardiactec, i hope you get this sorted you just have to keep fighting, go to the hospital and don't leave until they do something for you. although easier said than done and it doesnt always work. don't know what else to suggest.

becks x x x

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did they diagnose you with inappropraite sinus tachy?

They just tell me they don't know what's wrong and they are treating me for Tachycardia. :)

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Cardiactec,

I thinks it's crazy they won't do an EP study on you. That could at least rule out another cause.

I can't imagine how frustrated you are. I am also one of those who started out with tachycardia only---and a few bouts of CFS---then the big crash. When I crashed we had trouble controlling the Tachycardia on my normal dose of beta blockers, but then they seemed to worked after a few months from the crash. I will still get break through Tachycardia from time to time----and I hate it. It scare the you know what out of me.

It looks like quite a few people have this, and I think it warrents futher investigation. They shouldn't just blame the POTS until they check other possible causes.

I'm sorry you can't get the Doctor to cooperate with you. Hang in there---and don't give up finding the right help.

Maxine :0)---------------------------pink-panther.gif

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Cardiotech, I could be tachy either way. Supine or standing. Any activity, whether sitting, lying or standing, would set me off.

I do remember the first time I climbed this itsy bitsy incline to my car after work, and when i got to the top was bent over gasping for air. The person with me was sure I was having a heart attack....I wasn't sure what was happening.

The doctor said my tilt was negative, because he didn't know enough about it to be doing them. My pulse started out tachy and went to 160 at upright. My bp went sky high, and i think that's what he was basing it on. I can't find a single doctor where I live that believes you can have syncope with a RISE in bp as opposed to a drop, but that's what I do.

I'm not sure why he won't even do eps mapping without ablation, that seems odd to me. Your p waves may be different just due to the tachycardia, or he may just be assuming that. Never assume anything.....Can you get a second opinion from another group....tell them you just want a look/see? I am assuming ( :) ) you've had a holter or event monitor at least a couple of times to verify it's a sinus tachycardia as opposed to WPW, or something along those lines. Which can be cured. I don't believe IST is curable and agree it's a symptom of something else going on.

I now have tachy/brady which is why i had to get the pacer. Anyway, my pcp said I didn't have to pass out for the tilt to be positive and he was pretty irked with the cardio. Now I'd faint dead away before they got me upright, I'm sure!

It sounds like you do get symptomatic from the rate after a period of time, but anyone would that's racing along at 170. You only get so much perfusion at that rate and it can't be sustained for very long.

So anyway, I can pound away lying or standing, but more often than not I am upright. Although I was having 7-8 second pauses and rates of 30, while standing before the pacer.....

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Cardiatech,

It's curious that your doc won't do an ep study and did the TT first. My doc insisted on doing the EP first and then, when that ruled out any conduction abnormalities, he did the TT which he interpreted as positive. He argues that POTS is a kind of last resort diagnosis due to its rarity (I would say underdiagnosis, but let's not quibble).

My symptoms started out like yours--I was tachy for years without really any other symptoms. But I was tachy both standing and lying down. I was put on a moderate dose of BB's and this worked for a while. Later I began to get the fainting or near fainting and all the other symptoms in addition and was finally diagnosed 15 years later with POTS.

Even that diagnosis has been disputed by some docs: It took 20 minutes before my BP crashed and my HR went up on the TT. (BP down to 55/41 and HR up to 170). This seems to defy the typical diagnositc criteria of POTS too--in that the HR increase and BP crash are supposed to be more immediate upon standing. My doc, however, has diagnosed me with POTS and his prescription of florinef certainly did help. So I suppose I have to accept that, despite worsening symptoms.

Anyway, don't know whether this rambling is helpful or not. Really I just wanted to say that I share your frustration: I am sure many of us took years, even decades to get some sort of treatment/answer. So, just keep at it and solidarity!

India

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i have had a second opinion. i went out to mayo clinic and while i was there, i saw dr.low for the pots and i insisted to see an EP doc. they allowed me to see a great EP doc there and he told me it was all pots (they did a holter while i was there) and he said although my P waves were bizarre, the morphology of them did not change from a normal sinus rhythm to a sinus tachycardia so...........he said he was hesitant to do an EP study on me because of the known risks of the procedure, and the benefits didnt outweigh the risks of having the procedure. but still, he couldnt definitely tell me, without a shadow of a doubt, if they would or would not find a conduction abnormality on me (they already know via ekg that there is a slowing of right ventricular conduction, i have a partial RBBB, but they dont know if there is another conduction abnormality causing the tachy).......the RBBB would not cause the tachy.

has anyone seen grubb? i know a lot of you, not sure exactly who, has mentioned him before. actually my EP doc mentioned him and said i should go see him (but this was before i went out to mayo, now that i have been out there and mayo is supposedly the god of all medicine, :) nobody thinks i should go anywhere else).......i know grubb is both a neuro and electrophysiolgist? am i wrong about this? seems like he would be a great doc to see..................

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Cardiactec,

I too am tachycardia driven. I can go from 70's 80's up to 120's in a few minutes,,slowly, sometimes even up to 140-150..all this sitting. I can go as high as 160 standing. I am not classfied as pots, but have been diagnosed with dysautonomia. All tests show sinus tachy. No ep study done, basically the same response you recvd., risks and the fact that they see nothing that acutally warrants or that they suspect is anything that could be ablated. I'm not tachy all the time but I do get it enough and it is not limited to standing or sitting. I get it plenty of times sitting slowly goes up and stays and if I stand it can shoot up 30-40 more points higher.

I take atenelol and I would say it helps some, but I still get bouts of tachy anyway. If I take a beta while I am tachy it takes about 1/2hr to 45min to work. I don't want to up too much because of the fatigue and the drop in b/p that comes with it.

Hopefully something will turn around for us soon. :)

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Dr, Grubb is a cardiologist......I thought so anyway. I'm positive that he is actually....Having had the eps and ablation, i can see the Dr.'s side of this.....but also being the patient, I can see the frustration too....

If the specialists were all telling me it's autonomic (and you've seen the big guns) I would tend to think I had done all i could.

I would be shifting gears and rethinking that i did in fact have POTS, or some sort of autonomic dysfunction. It may be some off beat form, but it sounds like the experts all agree.

I have not been to the east coast to see any of these guys, but they are the pioneers and collectively have more knowledge than anyone.

I guess my advice to you would be to appreciate that you can still work, that hopefully it won't get worse, that at some point they will be able to help your tachy episodes. Thinking you have something that can be "fixed" is great, but in the meantime, i guess you are stuck with what you've got.

If the docs at mayo don't want to do eps, I'm not sure you will find anyone else willing to deal with the liability...that's the reality of this situation for you at this point.... :) morgan

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i know i think you are right morgan. i think it's just time to call it quits on going for an EP study. if the big shots say no (mayo) than probably shouldnt seek someone else out to go that route.

i know it sounds bad, but sometimes i wish i'd just go into a crazy ryhthm JUST SO this situation would have a change of pace - cuz everyone knows with CHANGE comes new perspectives, new ideas, and new therapies/treatment options. i probably shouldnt wish that upon myself, but i guess when you get desperate enough for some relief and some answers, you hope for a different outcome in ways that are deemed or may see somewhat irrational or dangerous.

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Morgan, I am sorry you had such a terrible change in your life with your ablation. It was from reading your previous descriptions, plus other posts saying ablation is contraindicated for POTS, that made me hesitant to even see another cardio who might recommend it. I was sort of "ordered" by the MD friend to pursue at least the testing.

From what I have read since my first meeting with the EP, the intracardiac evaluation of conduction is almost always done at the time of ablation and not separately. If he recommends ablation for me, I will ask him about this. I know they try to induce the tachy and then ablate the "problem" area. But they will ablate even if they cannot induce it.

I take very seriously what damage has been done to you. I may decide to leave well enough alone and not take any risks, being older with a less forgiving system. As this thread clearly reveals, sometimes we don't appreciate that we have it "OK" until a worse thing happens.

Cardiactec, have you tried other conduction modifiers like calcium channel blockers? What do you mean by bizarre P waves? Is the timing, direction or shape non-uniform? I don't know very much about these things but I am trying to learn in order to make my own decisions.

OLL

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