Can A Person With A Negative Ttt Still Have Pots?

[valliali]

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.

[potsgirl]

Many people have the TTT numerous times. Why not try it again and see what happens? My BP drops significantly when I stand, and my HR doubles or more. I have POTS/Orthostatic Intolerance.

[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?

[yogini]

Yes, people have negative TTTs but still have POTS b/c symptoms wax and wane. You can do a poor man's tilt - measure your pulse sitting and then standing - or get a heart rate monitor watch. If your pulse generally increases more than 30 points after standing for about 10 mins, you have POTS.

[valliali]

Hi yogini-

I have done the poor man's test many, many, many times, both with and without my heart rate monitor. My cardio has also done it. Never once has my hr increased more than 30. In fact, almost all of the time it increased about 5 or 10 bpm. My blood pressure does not drop. I have even done it the times that I feel like it races when I stand up, but my heart rate usually goes down to a more normal level by the time I can even count. So, by the time I count the 15 seconds, it's already gone down enough that it's not even close to 30bpm higher than what it was when I was sitting. Do people with POTS tend to find that the heart rate keeps going fast after standing, or can it really quickly resume to a more normal rate?

[erik]

I happen to have virtually the identical question that you have! "Does the pulse increase upon standing come and go with POTS or is it always there?" Sounds like others are indicating that it can come and go with POTS. For me, there have only been two times that I have NOT measured this increase upon standing since first finding it some time ago (I measure very often). Like you, my general symptoms do persist though super-hydration has helped some.

Did you or the docs measure an increase in pulse upon standing at some other time? My primary care doc did an "orthostatic intolerance" test which is basically the "poor mans tilt" that yogini mentions (except regular docs tend to focus on BP drop rather than HR increase... but should note both). It sounds like you are describing a doctor making a "clinical call" of POTS... which is kind of unusual to my (limited) knowledge.

Have particular treatments had any good effect on your symptoms? That can be a clue as to how valid a "diagnosis" is (although since peoples responses vary there's not any clear "rule" to this "deductive" approach).

I am personally "hung up" on the fact that a POTS expert steered you toward an arrhythmia as potential/likely source of your episode... I would say (ideally) you need to go back to a (different) cardio for a "full workup" with that information especially noted (and of course ALL your health records available). I do not know the details of how they "hunt for" PSVT or similar (like atrial flutter and whatnot) but I am concerned that they didn't exhaust that search in your case. Did they at least do a "stress test" and "valsalva and other positional provocations" in your cardio workup? Perhaps a holter monitor for a bit? With some luck... your insurance might cover those more fully than a TTT since they are more "conventional" investigations and appropriate to find/exclude/treat. If nothing else, a "consult" and second opinion of another cardio sounds worth it (perhaps even if that first cardio DID do a "full workup").

[Janey]

Yes, the general symptoms of dysautonomia cause me a lot more trouble than the actual core symptoms of POTS. If I *just* had POTS my life would be quite normal. There are some people who get very few POTS -type symptoms but still have POTS. In the morning I have a HR jump from 65 to 150 and I can feel it, but in the evening at the most I get a 15bpm jump and hardly any POTS symptoms. The reason I originally got diagnosed with POTS was because my gastrointestinal symptoms were *so* bad (so bad that I couldn't imagine just giving them an IBS diagnosis, which was what doctors were trying to slap on me) and it just turned out that I'd had POTS all my life and not really noticed! I've always been a tired, low energy, light-headed, dizzy person and just thought that was part of my constitution. Now I have started on salt tablets, I can't believe the difference, it's a life I haven't experienced before!

Janey

[yogini]

If you have POTS/dysautonomia, even though there are ups and downs, it shouldn't be that hard to readings where your HR or BP is off. It should be a sustained increase in HR, so that 10 minutes into standing your HR is still high. Going up and dropping down again is part of "normal". If your HR is usually only going up 5 or 10 points, this does not seem like POTS. If you measure your HR a lot and the change is less than 30 pts only twice, it sounds very much like POTS. You may have good hours or days weeks, or days when your HR goes up 20 bpm instead of 30, but I think you would see the 30 point increase pretty often....or, similarly, a consistent drop in BP if you have NCS. If you're not getting it that often, you may want to press further for your diagnosis.

Keep in mind that if you are on meds, that can interfere with the measurements. I probably only get a 10 bpm increase when I am on beta blockers.

[valliali]

Hi guys, thanks so much for all the responses!!!

I have had many poor man's tests - none showed a 30bpm increase in hr. Most of the time, it's around 10-15. The cardio who did my tilt really knows nothing about dysautonomia. In fact, my diagnosis is stated like such, "patient had a sudden episode of sinus tachycardia with heart rates abruptly increasing from 120 to 170. episode lasted 3-4 minutes with symptoms of forceful heart rate and panic. this is a most unusual response, one which i have never seen. this indicates some degree of autonomic dysfunction, likely POTS as it is the most common in young women." that is my diagnosis.

so then i visited a POTS specialist, who is very highly regarded, even on this forum. she of course immediately did the poor man's tilt (i was advised not to take beta blockers two days prior to visiting her), and she measured my heart rate from lying down to standing, and from sitting to standing. in both instances, my heart rate did not increase 30bpm. she said that it increased around 20bpm, which might be a little faster than normal, but she also remarked that my heart rate slowed down really quickly upon standing. she has done this a few times, all normal. i also had a norepinephrine test from laying down to standing, also normal. the POTS specialist thought my symptoms sounded like lupus (which has been totally ruled out) or a virus (i got sick right after living in africa, and it seems most of my doctors agree that i have some kind of post-viral syndrome, whatever that means).

it is definitely clear to me that my autonomic nervous system is haywire, but i seriously doubt the POTS diagnosis. it just seems to have stuck b/c doctors don't know how else to explain a sudden ANS dysfunction out of the blue. from what i have read, a sudden onset of sinus tachycardia pretty much doesn't happen. there is a really rare arrythmia in which the EKG looks exactly like sinus tachy, but it is a sudden onset. or there is a PSVT, which when i read the symptoms, sounds EXACTLY like what i have. exactly. i just don't understand how a cardio, and a well regarded one in this area, can watch a PSVT on a monitor for four minutes and miss it. i have read that they look similar to sinus tachycardia, but still, four minutes and he missed it? i just don't know, i have so many uncertainties.

beta blockers are the only treatment that have worked for me. tried a snri, which basically sent me into a seven hour severe panic attack (majorly rapid heart rate, high blood pressure, diarrhea, felt like i was going insane). and that was just on the starting dose! i definitely have a norepinephrine sensitivity going on. interestingly, one of my tests awhile ago, a 24 hour urine test, showed that my normetanephrines and metanephrines, the metabolites of NE and epi, were very very low. this would indicate that i am not metabolizing the NE and epi. makes sense to me. but no doctor can explain those values and what it means. none. but, while a sensitivity/overreaction to NE/epi explains a lot of my symptoms, there are others that it just doesn't. like joint swelling and neck stiffness.

i'm just so frustrated with doctors not wanting to look at my whole picture. i went from a serious collegiate athlete to having all these problems, and it seems like with no warning, no trigger. would a genetic autoimmune problem come out of nowhere like this? my most recent diagnosis, from a CFS specialist, again very highly regarded, is a 'POTS-CFS-like syndrome." He says I don't have POTS and I don't have CFS, but I have a lot of symptoms of both. What in the world does that mean?!?!?!

Sorry, I am totally ranting. Thanks for allowing me to, and for listening!!!

[Mrs. Burschman]

Sorry, I am totally ranting. Thanks for allowing me to, and for listening!!!

You are very welcome. That's what we're here for. We take turns ranting!

I feel your pain. I know that all this stuff is connected somehow. How is the question. I would be a great research project.

Amy

[Janey]

This whole thread has got me thinking about what really defines POTS... How long does the HR have to be crazy after you stand up from a lying position? I was Dx with POTS through a tilt table test and still often check it on a HR monitor when I'm not feeling great. Like I said before, my resting HR is 65bpm, then I stand up and there's a pause of about 5 seconds and then it has suddenly jumped to 150bpm, then over the next two minutes as I stand still it goes down very gradually to about 100bpm and then walking around varies between 100-120bpm. However, if I lie down in the evening, my resting HR becomes completely different, about 75-80 and when I stand up it jumps to about 120 but adjusts quite quickly.

Is this still POTS? Even if it adjusts quite quickly?

janey

[erik]

A temporary increase in pulse upon standing is normal (more than 30bpm is not typical but is "allowed" if temporary). It is one of the immediate responses to compensate for the sudden drop in BP that would otherwise happen even in normal folks.

When the HR increase is sustained for several minutes, that is evidence that something somewhere is wrong, failing, malfunctioning and this fits the definition of POTS most solidly (provided it has associated symptoms, lasts for at least several months and doesn't have an otherwise known disease or simple cause)... although docs even differ on these criteria. As far as I know, Janey's response still very much fits the POTS HR-increase because even though there is a drop after a while, she stays higher than the 30bpm above rest rate (plus the huge increase off the bat is fishy).

I had never heard of a doc making a "clinical call" of POTS like the cardio did for you valliali (not like I'm an expert or anything, of course). Are any of the treatments working?

It's always possible for docs to make mistakes, for you body to be weird on the day of an exam, for an illness to be elusive. Sometimes the more rare things might be worth screening for... mitochondrial disorders, whatever else. These syndromes have "nonspecific" signs & symptoms so there is a huge set of things to consider if one were to make a truly exhaustive search (and there can be a couple things involved... on incredibly rare cases, one disease can actually "help" another one and serve to cover it up!). To my knowledge, every medical test has potential for "false negatives". Everyone is prone to error. Our bodies fluctuate constantly. It seems inevitable that you repeat some things and make sure various possibilities have been "screened for". Did an endocrinologist to thorough testing... like for pheochromocytoma? Were cardio stress tests involved (maybe repeated)? Is there a chance of mitochondrial disease emerging? Did they look for anti-bodies of various things... either autoimmune stuff or more standard infectious agents like epstein-barr or whatever? Have some MRI & CT's been done and blood tests to screen for even rarer hormone-secreting things than pheo? Unfortunately, I'm sure the list goes on and on! Are there other dysautonomias that might fit... or might you be a new breed or have an "offseting" trait or condition that makes your "medical presentation" unusual?

I've only got questions and no answers... except just to say not to be bashful about retaking tests, doubting doctors judgments, etc. It doesn't even have to mean they made a mistake... stuff just happens that way sometimes.

[erik]

Oh yeah... nutritional deficits? Neuro-syphilis??? Medicinal side effects or lingering effects?

Are there any obscure clues in a family history? Things to push toward autonomic stuff... things to push toward heart probs (like unexplained sudden deaths of relatives... various other things).

[Jan]

According to the NDRF site.....

The normal response for a change in body position, results in a stabilization to the upright position in approximately sixty seconds. During this process, the normal change in heart rate would include an increase in heart rate of 10 to 15 beats per minute, and an increase in diastolic pressure of 10 mm Hg, with only a slight change in systolic pressure.

For those who are afflicted with Orthostatic Intolerance, there is an excessive increase in heart rate upon standing, resulting in the cardiovascular system working harder to maintain blood pressure and blood flow to the brain.

I think in order for a diagnosis of POTS, you have to have the change in HR. The T in POTS does stand for tachycardia after all.

[Tammy]

Yup, it can. I had a normal TTT but my electrophysiologist based my diagnosis on all my other symptoms. However, when I do a poor man's test at home, it shows a major jump in heart rate from laying to standing and my heart rate will stay high and my pulse pressure narrows at the same time, as if my body is running super lean, like a car that isn't getting enough fuel to it's engine.

I have swollen lymphs in my neck too and many symptoms of CFS but my physician doesn't want to add that to my POTS diagnosis as he feels CFS isn't actually an illness, so we just focus on POTS.

Take care.

[ramakentesh]

yeah yours is a strange situation. if you dont have dizziness then it is unusual but ive met another guy with POTS and no dizziness (lucky bloke).

Hvae you ever looked at inappropriate sinus tachycardia? There is also work coming out from Blair Grubb on receptor hypersensitivity.

[valliali]

wow, you guys are amazing. here you are with your own issues and questions, but taking all this time to help me with mine. thank you so much.

erik, you ask a lot of good questions! i have been ruled out for almost everything that would be a "differential" diagnosis for POTS. like thyroid issues (i have had extensive thyroid tests, all super normal), pheo, other neuroendocrine problems, lupus, and all kinds of viruses and bacteria (mycoplasma, all the herpes, etc etc). the only unusual test that i did have was not long ago, and it was an epstein barr. it was the VCA test, and it was outrageously high. every other time i had it taken (which was like three times before), it had been normal. however, the early antigen test, which is usually used to detect chronic EBV, was normal. my infectious disease doc, who is like the leading EBV guru, said he had not seen anything like that but that he didn't necessarily think i have chronic EBV. plus, i lack many of the symptoms, like fatigue, sore throat, etc. i agree that i don't sound much like an EBV patient, but that one test was wayyyyyyyyyyy off the charts. i wonder if whatever else is going on caused that.

as for family history, i don't think i could have a healthier family. although, my father does have early onset alzheimer's disease (he was like 53 when diagnosed), so i constantly wonder if that could be tied in. he believes that his grandfather had it as well. but, it seems like with all the cases of alzheimer's, there'd be more stories of patients like me with some kind of connection. as for everyone else in the fam, no heart problems at all. my like 90 year old grandmother has a-fib, which she just developed, and that's it for the heart. no sudden deaths, nothing. the women in my family live to be like 100. crazy, huh?

the "clinical" call about my POTS is just strange. i mean, i don't even think the cardio even really knew what he was doing. to tell me that he's "never" before seen a sudden increase in sinus tachycardia is just wrong -- because it's not possible.

erik, thank you so much for your very thorough response. i greatly appreciate it.

tammy, interesting that you had a negative tilt. did they give you isuprel? is your increase in hr only once-in-awhile like mine, or is it fairly consistent? like when you are at home, what are the odds that you would be able to detect it? for me, the odds are super slim. in fact, i have never detected an increase of 30bpm or more, even when it feels like my heart is racing when i stand up, which is still very rare. like i am 100% sure that if i had performed a tilt a hundred times today, not one of them would have been positive. what does your doc say about the swollen lymph nodes????? mine come and go. some days i can't feel them at all, then others they feel like golf balls. i've had doctors feel my glands and tell me that it's in my head that i think they're swollen, then i'll see them again and they're like wheeling me into the biopsy room because they're enlarged. do yours fluctuate like this?

rama, i definitely think i have IST. i have not officially been diagnosed with it, but i'm sure i would if i saw an appropriate cardio. my heart takes off with very minimal stimulation. my heart responds super well to beta blockers. like just 5mg of propranolol, which most of my doctors insist would never make a difference, is enough to tame my heart. my heart rate used to get up to 220 during exercise, now, with a beta blocker, it's at 160. i also think that i have a sensitivity to norepinephrine... or i am not metabolizing it... my reaction to effexor, caffeine are big clues. i can't even drink decaf without my heart racing. however, the only issue that i have is that IST still doesn't explain so many symptoms. the immense head pressure, swollen glands, low body temp, arthritis, i could go on and on.

overall, i just feel like i am at a dead end. i have been going to stanford for a year now and have seen a huge team of docs, who have each run long panels of tests, and still, nothing. the best i got was a "post-cfs-like syndrome." i just keep thinking that their could be this huge african worm in me or parasite or god knows what and i'll just never find it because all my docs think i'm too complicated. when i reread some of my medical records, especially the transcripts between some of my doctors, i have noticed that many of them rave about what an interesting and exciting patient i am. so they dive into all these tests, but when nothing comes up, they're just done with me. i'm no longer interesting and exciting, just ego-deflating and frustrating.

i think i might have to suck it up and see a llmd soon. i have such conflicting thoughts about lyme, and i feel confidently that i could receive a clinical diagnosis. i did test for lyme thru igenex, the "lyme lab" and it came out quite negative. so i am very hesitant, but also desperate.

anyways, thank you all very, very much.

[erik]

From your symptoms I can certainly see why that cardio suspected "some kind" of autonomic disorder! In a way, they are doing a favor by making the "stretch" to POTS. Have fludrocortisone or some of the other meds or lifestyle techniques ever made a big difference for you beyond beta-blockers? "Diagnostic treatments" or trying a med in order to get clues about a condition might be merited.

Have they done any "fun" stuff like lumbar puncture? Especially where they measure the "escape pressure" or whatever... in addition to looking for spinal fluid content abnormalities? Others here have experience with that, but I think I heard that such pressure problems can even have side-impact on autonomic regulation (and over or underpressure there can certainly explain bad head pain). One tidbit I read states that elevated eye pressure will slow your heart! The autonomic system is pretty wacky sometimes in the way it ties together things that don't seem related, even in a normal healthy body

[potsgirl]

Great info, Jan~

Just wanted to add that with OI your BP drops significantly upon standing (mine goes from about 90/60 to high 60s low 70s/high 50s), while you HR increases dramatically (60 supine to 120-140 standing). This is definitely one of the areas you get into trouble with syncope.

[Janey]

One tidbit I read states that elevated eye pressure will slow your heart! The autonomic system is pretty wacky sometimes in the way it ties together things that don't seem related, even in a normal healthy body

Yes! I read that if you have tachycardia and you press your eyeballs with your hands, your heart slows down!

janey

[ramakentesh]

Great info, Jan~

Just wanted to add that with OI your BP drops significantly upon standing (mine goes from about 90/60 to high 60s low 70s/high 50s), while you HR increases dramatically (60 supine to 120-140 standing). This is definitely one of the areas you get into trouble with syncope.

By OI you mean conditions other than POTS, where there is often no drop in blood pressure and even an increase in blood pressure but where cerebral hypoperfusion is still present.