Back From Research Study...

[cardiactec]

hey all,

i am back from a research study and was told that i have "normal flow", a little higher than normal than what normal people pool in their legs while standing, and normal vasoconstriction. i was told that the only thing that was really "off" was my heart rate while standing (190BPM)......they think that i have a B receptor problem and some sort of conduction problem in the heart because my ekg's didnt look "typical" for a pots patient (i guess my P waves were crazy peaked and that it didnt look sinus)........they said that i was a bizarre case because i didnt fit any type of pots at all, and that i only fit pots because of my crazy heart rate and they dont know what is causing it other than this suspected B receptor issue and/or an actual heart rhythm disturbance........

i was also told that because my primary symptoms were tachycardia and fatigue, that i REALLY dont fit the bill for typical pots because most pots patient's primary symptom is dizziness/lightheadedness........is this everyone's primary symptom?

has anyone here been diagnosed with a specific type of POTS, like high flow pots, low flow pots, or normal flow pots?

i guess i am a little frustrated because i was hoping to get some sort of answer, definitive, as to what is causing this crazy heart rate and the research crew was just as confused, if not more, than when they were done with testing on me.......though i didnt get an answer, the doc was great and ended up sending my ekg to an EP doc in canada for a second, third, fourth, or whatever number opionion this is on the morphology of my P waves on ekg..........the woman that did my ekg freaked out! she had me supine all hooked up to a 12 lead ekg and my rate was like 120, then she had me stand up to take another ekg and my rates jumped to 190. she just about had a heart attack and couldnt believe that i couldnt feel my heart going that fast!

anyway, that was my time the past couple days with research. if any of you can tell me if you have been told/diagnosed with an exact, precise cause of your POTS, i would appreciate it.....i know i was told that my thermo test at mayo was "non-specific" for a small fiber neuropathy. argh, gotta love that "non-specific"!!

[cmtaylor5]

Hi,

Sorry to hear that you are frustrated with the lack of answers from your testing. Where did you have it done?

I thought I would respond because I know from reading your posts that we have very similar main symptoms. My primary symptoms before treatment were tachycardia and fatigue, and I don't get dizzy or lightheaded either.

I have never had any flow testing done, but if I had to guess, I would imagine that pooling wouldn't be a problem for me. However, I have had countless EKG's done, and many with heart rates between 160-190+. Some were taken at rest during an adrenaline surge, and some were taken during and after exercise, and every last one of them was strictly sinus rythym with no variations at all. I have been seen by 2 cardiologists, and 2 electrophysiologists, and all 4 of them agreed on that.

You do mention that you had a heart rate of 120 supine during one EKG, and I would say that we differ there. Unless I am having an adrenaline surge (and I am very aware of my heart rate during one of those) I never had resting tachycardia. Sometimes if I was nervous, it would hover around 100 at rest, but otherwise, my resting rate was low.

Most of the time I have given up trying to find out the origin of my problem. The doctors I see regularly know something about a few causes of POTS, but I don't see anybody who has a grasp of the full picture. They'll order diagnostic tests if I ask them, but not much ever materializes. I feel like I am the one directing my care sometimes. I usually just try and live with it since my symptoms are mostly under control.

Just recently my husband has been after me to start persuing an answer again. He believes my POTS is secondary and not primary. I'm not sure what I'll do. Like you are finding out, hitting dead ends and getting no answers is really taxing. I've been visiting the board for a year, and I don't really think the majority of us ever get a really specific answer as to what is causing the problem.

Good Luck,

Carolyn

[Guest dionna]

my primary symptoms are the dizziness/lightheadedness, headaches, and of course the pre-syncope and syncope. plus all the other "wonderful" stuff but those are constant and everyday. i am sorry you are having to go through all of this and i wish you the bestest of luck in finding something out soon. take care in the mean time.

dionna

[futurehope]

I'm sorry for your frustration in not fitting the "typical" POTS case.

FYI, my two worst symptoms are orthostatic intolerance (feeling poorly when sitting or standing) and fatigue.

[Dizzy Dame]

I'm sorry you were left with more questions than answers. But hopefully whatever is wrong will be more treatable than POTS, which as you've probably learned, is difficult and sometimes impossible to treat sucessfully. I'll keep you in my thoughts as you continue to journey for answers

-Lauren

[bttrflyamby1981]

I really hope you find your answers soon...

I have about 15 symptoms all the time..and they do include lightheaded/dizzy.

But I have not got a dx yet so not sure if I even have POTS?

Amber

[Lulu]

sorry your testing answers weren't what you hoped. but you do have some answers....you just need to find what the questions are! just trying to cheer you up. i do hope you find more answers soon.

my primary POTS sxs were tachy when standing, orthostatic intolerance and crushing fatigue, before treatment. i also have NCS, so i have fainting, dizziness and lightheadedness, it too was worse before treatment, but both are kind of Ok now. not completely controlled, but get-alongable. (join me as i start a revolution of making up new words!! ) seriously, it's a lot better w/treatment, but that's cuz i finally got a solid dx. it took YEARS.

maybe you have a combo of different dysautonomias?? have you ever had a TTT done? i'm curious about who did your testing, too.

i does sound like there is some weird stuff going on there with your heart....so if you don't have POTS, maybe they can find out what it really is?

i wish you all the best in your continued quest and journey. (hugs)

peace,

lulu

[Patricia]

If they do not feel you have POTS, could you have Idiopathic tachycardia? This is a fast heart rate with no understanding as to why it started. They feel there is an "irritant" in the electrical firing of the heart. I know a woman who has this and has great fatigue and dizziness. Her heart rate is high and sometimes more so when she is lying down. She sees an Electrophysiologist who has her on a beta blocker and anti-anxiety med( for adrenalin surges ) right now. If she worsens she may need an ablation. She is only able to work a few hours a week and go for walks vs. exercise as the exercise wipes her out. So, though she does not have POTS, she is quite affected by her condition. Hope this gives some insight. Good luck!

Patricia

[mom4cem]

Sorry that everything turned out so vague. Just like the poster before said,,what about IST? It is believed to be another form of dysautonomia. Did they say what rhythm your P waves pointed too?

[cardiactec]

hi there,

thanks to all for all the replies....

just really upset that nobody can figure this out......i work in cardiology and know ekg very well and it appears to me that this is not a sinus originated tachycardia. my P waves look nothing like sinus P waves. they are HUGE, like mountain peaks, which is strange because usually when we see that on EKG it signals that there is some sort of right heart failure or pulmonary problem. i have neither, confirmed with echo and even a cardiac catheterization to check pulmonary pressures......but i am still left with these funky looking P waves.

every doc that sees it immediately says "wow, are those your P waves?" because they look so strange......it is bizarre though because the tachycardia can and only seems to be triggered by things that would alter autonomic responses, such as standing, exposure to heat, minimal exertion, raising the arms over the head (which increases blood return to the heart and increases the action and workload of the heart, hence the heart works harder, tachy, etc), eating, bending up and down (but i dont have "typical" pots symptoms with it, i dont get dizzy/light-headed, etc)........

......the doc i just saw is completely baffled. he is trying to figure out whether or not there is such a thing, beyond just postural sinus tachycardia, that can mediate or induce other types of heart rhythm disturbances with position change (such as atrial tachycardia)......i doubt it though, as does he, because there is such a correlation with me and the tachy between not just standing and tachycardia but also with certain activities and things i am exposed to (heat, exertion, eating, stress, etc) - which implies that there is an autonomic response happening. if i was just sitting or lying down and this tachy of 190 started, than i would think it less likely to be due to autonomic dysfunction and more likely to be due from conduction pathway abnormality.......

i have heard inappropriate sinus tachy many times. there are a lot of cardios that consider pots and IST the same condition, and some say they are two different conditions that can occur together....actually my EP doc said he thinks it is pots with features of inappropriate sinus tachy but i think he is just getting technical when he says that. he is a very smart doc and i think he is great, i am just not completely convinced that this is completely autonomic triggered and not also something to do with a messed up conduction system (which no one will ever know exists or not because nobody will do an EP study on me!!! and when i say an EP study, i mean catheters and all, inside the heart, mapping the pathways, pacing, etc ...not just another tilt table tesst.....argh!)

the docs just say my P waves are "huge", "peaked", and once my rates get really high, you cannot discern the P waves from the T waves (the hump that occurs before the P wave on ekg), they all mush together (which is a characteristic in it's morphology/how it looks on ekg of PSVT or atrial tachycardia or AVRT).......it looks this way, but usually meds or different maneuvers like valsalva or carotid massage can instantaneously stop these type of rhythms dead in their tracks and convert it back to sinus tachy or normal sinus rhythm, and mine does not do that......the rates just progressively slow and then slowly creep back up with no sudden offest or onset in the fast rhythm and the P waves look the same while lying, sitting, or standing.....it is just typical in cardiology, specifically to consider any regular rhythm over 150BPM as SVT but sinus tachy IS essentially a type of SVT as well if over 150BPM. it just doesnt look sinus on my ekg ..........

frustrated....

thanks for your posts though guys....

[calypso]

I have seen on my EKG report at least twice "prominent inferior P waves." I have no idea what this means and don't really care, unless it's going to kill me. I was told it was insignificant. I do not have right-sided heart failure, although I do have difficulty breathing (but no diagnosable pulmonary issues following many, perhaps all possible tests).

You could have IST, which would be consistent with a high heart rate while lying down. Some POTS patients here do get this, but it's more episodic than regular.

I would not worry about a diagnosis as much as focus on the treatments. Now that you know what the possible treatments are, try them by finding a doctor who is willing to let you try them. That will help you more than any diagnosis. I find that most doctors end up wasting too much time running tests and letting us sit here, feeling miserable, when they should actually be asking our symptoms and doing more trial and error. That would give them more real data and cases than any research study.

Hopefully you find a treatment that works. In the meantime, I would focus on eating a well-balanced diet with plenty of fruits/veggies, getting at least seven or eight hours of sleep, and exercising -- even if you absolutely have no energy or interest. These are the things that after nearly three years have helped me the most. And taking a good-quality vitamin has helped me, too, plus staying hydrated. Good luck.

Amy

[cardiactec]

prominent inferior P waves usually indicates a pulmonary/lung process (COPD,emphysema,pulm. HTN)etc) or right-sided heart problems (severe tricuspid regurg/right ventricular chamer hypertrophy). if they have ruled out all those things, than yes, you are right, there is no need to worry....P waves that look that like can also indicate specific types of arrhythmia's that are rate dependent.

i guess i really dont care as much for treatment options as i do in getting a diagnosis because i dont want to just take meds that could work for four or five different types of conditions, whether or not it is all encompassing and it takes care of all conditions x,y, and z. i guess my point is, i dont just want a band-aid that is sufficient enough to work for any kind of "cut" if you know what i mean. stiches are meant for deep cuts, bandaids are made for minor cuts and not just any cut in particular. i think it is important to work first for diagnosis and then to investigate treatment options.

there are a lot of people on many meds that are not needed and actually a lot of meds end up causing more symptoms than people started out with before taking any meds.

i guess i am just at a point, working in the med field, where i have seen too many meds handed off to cover a multiple of problems that could be going on, that'll work for problem x,y, or z. funny that many practitioners (NOT ALL) never want to try and spend some time to figure out what the x,y, and z could be....docs can sometimes become very "loose" in their practice by taking short cuts in never trying to find the root of the problem and instead bump up pharmaceuticals to hush up the patient, or perhaps yes, to just make their problem or symptom go away. i disagree with this type of patient care. diagnostics always come before interventions....and if the root of the problem cannot be found diagnostically, than meds should be a last resort and yes, i agree with you -- exercise, eating well, lots of sleep, etc, is the way to go..

hopefully we'll all get the answers to what is going on at some point!

thanks for your post.

take care amy!

[MightyMouse]

First off, are the docs you saw specialists in POTS, NCS, etc? The reason I ask this is because there are huge misunderstandings in the medical profession about what is / is not ans dysfunction. Also, my EKGs all have anomalies (s-t changes inverted waves) and that make the machine automatically print out r/o LVH (left ventricular hypertrophy aka enlarged left ventricle). This always leads to me getting ANOTHER echo. Big Sigh. It's just my funky system.

During my right heart catherization at NIH, I had some really, really wacky heart issues--that caused the cardiologist and ep cardiologist (both were running the dysautonomia research there-I was lucky patient 13) to call another specialist up at Hopkins who was on speaker phone during much of my testing. I was fully awake during the entire 2 or 3 hours in the suite b/c the test required that I get NO cardioactive meds, including sedation. So, all I was given was topical anesthetic for the instertion point in my great vein. He basically said it was not outside the realm of what's seen with folks like me. Eventually, my heart reverted back to it's normal rythymn (with it's inversions and s-t issues), so everyone calmed down and let me finally go back to my room.

If you've not gotten counsel from ANS specialists--that might be a place to go. For example, Dr. Grubb is an EP cardiologist who might have some insight into what's going on with your P waves in comparisson to the hundreds and hundreds of other patients with a variety of ans issues.

I hope you find answers that help you function better. Nina

[cardiactec]

hey nina,

yes, i have seen dr. low, dr.bonyhay/dr.freeman, the latest dr.stewart, and finally on multiple occasions my very smart and awesome EP doc here in my home state.

i dont have any flipped T waves (i am guessing they did the cath on you because they thought you had a coronary disease, since inverted T waves can usually indicate that/ischemia? or as you said, they are just "non-specific).....

oh yes, i know all about the ekg machine. it interprets what it senses for voltage criteria mainly, so if your P waves are huge in inferior leads and you also have a more prominent positive QRS in V1, than it might think you have right ventricular hypertrophy (i know you may not know a lot of ekg, so i'm just giving you an example).......usually what will happen is, if the ekg picks up two or three types of waveform morphologies along with voltage changes, it will assume what it has been programmed to interpret as "abnormal"......cardios, as you know, then usually follow up these abnormalities (which some can be normal variants) with echo.

ekg is usually pretty accurate in it's interpretation for rhythm disturbances. it is not so accurate in it's interpretation for things that are diagnosed mainly on voltage criteria of waveforms (like your T waves inversions, since ischemia is usually seen when the voltage of the T wave is over a certain ''number'', not necessarily just on the fact that they are inverted....docs also look at how deeply inverted they are, and in what leads they are inverted in, etc, etc...the ekg machine isnt smart enough to discern so many variables)... ....so it spits out an abnormal finding, and thankfull depends on a docs expertise to reveal if it is really abnormal or not (thank God there are some docs who dont just depend on what a machine thinks is going on! lol!!) ........yep, left ventricular hypertrophy is one that comes up a lot on ekg machine interpretations, and the majority of the time, it is not appreciated on echo. with left ventricular hypertrophy, usually true hypertrophy, you wont just see a voltage change in the QRS in certain leads, but you will also see funky T wave changes as well.....did they see this with you?

why did they do a cath on you? were they checking pressures? or coronaries?

oh by the way, just to take note, excessive tachycardia (which we all know so much about, lol! more than we want!) can cause st-t abnormalities on ekg, especially in inferior leads (this is usually where it is definitely non-specific). if you were hooked up long enough to ekg, enough to settle the heart from tachycardia, it would resolve. same goes with things like hyperventilation and such....because the heart isnt receiving the oxygen demand it needs, especially with fast heart rates...so usually you see non-specific st-t changes, but that arent indicative of true ischemia (lack of O2 to the heart/coronaries).......if someone with coronary artery disease came in, however, and whether or not tachycardic, you'd see deep deep inverted T's (in leads that are more specific for coronary disease and not just inferior leads) instead of just inverted T's with no depth to them.....

dont ya love the cardiac conduction system! hahaha!

great talking with you....i'll let you know what the doc says about my ekg when i hear back from him (he sent it to a EP guy in canada).......

oh yeah, my EP doc mentioned grubb. i'm considering going to see him at some point if we cant figure this out!!

[MightyMouse]

I guess I'm suggesting Dr. Grubb as an option more because he is an EP cardio, and lots of the other specialists are not as well versed in the EP portion.

I'm glad you've had some knowledgeable docs. Like you, I don't fit the profile of just one disorder. I have both POTS and NCS dx's--which some docs will tell you isn't possible, but it IS, and I am living proof.

As for the r-heart cath-it was part of study at NIH, and had several aims: first, they wanted to measure my flow/pressure at the coronary sinus. I had the 2nd lowest they'd ever measured in normals and dx'd patients: 4 (I think normal is something like 13).

secondly, they wanted to do direct blood draws to measure catecholamines as they are released during specific challenges they made happen via lower body pressure (my waist-down was in a vacuum tube), and also injection of yohimbine to cause massive catecholamine release. They managed to duplicate what happens to me when I have a bp crash--I had a huge output of norepi, followed by a drop off which, if I were standing, would have resulted in the the NCS symptoms.

My t-waves have big spikes, high and low. The few times I've been ill enough to be admitted from the ER, they've always ordered an EKG in the ER b/c of my tachy upon exam, even when lying down. Whenever I'm really, really sick, I usually sit at 120 bpm resting, which despite my explanation that it's normal for me, has always resulted in an EKG. Then, they call in the cardio to read it--and again, I explain--and again, they order an echo--and a few times, a stress echo. I have a really good ep cardio now. He doesn't know POTS or NCS really, but he knows ME, which is all I can ask for.

Nina

[calypso]

Just wanted to say I hope I didn't offend you re: the diagnosis issue. I just know, having been on this site for almost three years, that MANY of us don't fit the "profile." There may come a point at which you will have gone through every possible test and still not have a diagnosis. And yes, the diagnosis is ideal, and we should not throw meds at anyone and everyone. I actually take absolutely nothing right now. But if your quality of life is poor, then the trial-and-error method may save you from becoming limited in what you can do. I don't know if you are still able to work as much as you want to or do all the things in life you want to do -- I am guessing that if you're on this site, you probably aren't living how you want to. I just think you should know that the majority of autonomic experts have used a pretty medication-intense treatment plan; most here are on at least two or three meds minimum at the recommendation of these specialists.

I hope that you are able to be as functional as you want to be and get some answers soon. But unfortunately, you may get no answer. And that's not the worst thing in the world, if you ask me. I'd rather have no diagnosis than a bad one!

Amy

[ramakentesh]

deleted

[MightyMouse]

ramakentesh-- I think you are incorrect b/c not all POTS patients have the same etiology. I highly doubt that methylation issues have anything at all to do with my particular disease process--I have EDS, so the low pressure is likely due to my viens and arteries not being as rigid as the average person. Please be careful when making generalizations about the findings of the studies done that you've reported on; they do not yet have enough participants/subjects to be broadly applied to all patients with POTS and/or ans dysfunction.

Nina

[cardiactec]

you didnt offend me at all!! we are all in this together and i appreciate any suggestions/info/input from anybody.

thanks for your thoughts!

take care!