Dysautonomia (Autonomic Dysfunction) Community
POTS
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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POTS

Hello everyone! I am a member of the heart rhythm community on here and I heard that my POTS could have something to do with my rhythm problems. A little about me, I was diagnosed with Inappropriate Sinus Tachycardia in 2007 and the Dr mentioned he thought I had a "touch of POTS" but I never thought much about that part. My heart rate will go up to 200bpm with a small amount of adrenaline and he told me my heart was just sensitive to my own adrenaline. Then this January, I developed 20,000 Premature Ventricular Contractions out of the blue. I am now on a beta blocker which reduces these quite a bit.I had all the tests for my heart stress test, echo, EKG, and blood work, everything was normal. I have no other health issues besides Polycystic Ovarian Syndrome.
Does anyone know if the POTS diagnoses has anything to do with my heart rhythm issues or has anyone else had rhythm issues d/t POTS?
Just curious if there is a connection. Thanks in Advance!
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612876_tn?1355518095
Anecdotally speaking, it does seem that patients with IST and/or POTS have a high incidence of PVCs and/or PACs.  I don't know if this actually comprises a statistically significant difference over people without IST or POTS, because there's the confounding variable that patients with IST and POTS are subjected to many more tests that would reveal ectopic beats so it could possibly be that just as many people without IST/POTS have PVCs/PACs but don't know it because it hasn't been medically documented.  I don't recall seeing any specific statements relating ectopic beats to IST/POTS in the any of the dysautonomia texts I've read; however, I have heard doctors say that a more rapid heartbeat (i.e. tachycardia) increases the likelihood of/frequency of ectopic beats.  A rough analogy would be that the faster a worker does his job, the more likely he is to start making mistakes.  Based on this theory, it would seem that a beta blocker would be the best bet for treatment, in the hopes that slowing down the heart rate would reduce the incidence of ectopic beats.

It sounds as though your diagnosis may be a little fuzzy in terms of whether you have IST, POTS, or both.  Let us know if you want more information on diagnosing different forms of dysautonomia and/or finding dysautonomia specialists/clinics.  If you click on "health pages" at the upper right, you can access various pages of information we've put together, some of which is relevant to POTS/IST.  (We share our health pages with other neurology forums, so look for the ones specific to dysautonomia.)

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1217309_tn?1267053777
Thank you for your reply! My diagnosis is very unclear with the "touch of POTS" I was researching POTS online and found that I closely resemble the hyperadrenic POTS in that my HR goes up considerably when I stand and when I walk it goes up 20-40 beats a minute( My heart rate without the metoprolol is around 100-120 standing and around 140-160 walking....areobic excercise causes it to reach 200.) and my blood pressure will shoot up very high and then other times I am orthostatic. I am also constantly dizzy since May last year and no one can tell me why. So IDK maybe I have POTS for real? I am trying to get into e neurologist so maybe once I do I will find out more.
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612876_tn?1355518095
It definitely sounds like you need to go to someone who is more knowledgeable about POTS and dysauto to get your diagnosis sorted out.  There are some less common cases where IST gets diagnosed comorbid with POTS, and there's a chance you might be one of those.  It will take a strong diagnostician in the field of dysautonomia to make these distinctions properly.  Fortunately, you live in the Midwest so you're within reasonable distance of hospitals that have dysautonomia clinics.  Going by the city listed on your MedHelp profile, you're about 5 hours from Vanderbilt, and 9 hours from either Mayo Rochester or Cleveland Clinic.  Though certainly not in your backyard, any of these drives could be done in one day (especially if you bribe a loving family member into taking you--haha); patients in the western US are in the unfortunate situation of having no dysautonomia clinics within driving distance, so being in the middle of 3 of them is pretty good!

Here's where we have the contact information for those diagnostic centers if you want to pursue that:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

They have testing equipment at these centers that, unfortunately, no other hospitals in the country have.  They also have a great deal of experience and skill in this field.  However, you may find that you are able to get the care that you need just by shopping around for a local specialist with more experience with dysautonomia.  If you haven't already, I would highly recommend that you personally request all of your medical records from any testing that has been done so far, including actual test results (not just the reports/summaries).  More on this here:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Medical-Records--Test-Results--and-Charts/show/1044052

You may be surprised to find that a different doctor may be able to re-read your tests (such as the original data from the tilt) and come to different conclusions or a more firm diagnosis.  It could be the difference between having to repeat uncomfortable tests and not.  (Not that we don't all love those tilts--blech!)  I hope you get to the bottom of things soon so you can start feeling better!  We're happy to answer your questions along the way.  :-)
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1338768_tn?1276013226
I am new to this site and I'm so grateful to have found it.  We are a military family and lived in your area recently.  I found a wonderful cardiologist in Maryville, IL.  He understood me right away.  I have thought about driving back to him from Kansas, where we live now, so I can keep him as my Dr.  I have a new symptom with my pots (hyperadrenergic)....PVC's.  They are constant and tiring. I think my adrenaline has kicked in overtime with the PVC's.  I'm also hypokolemic.  I'm taking those big potassium pills.  I have had full blown POTS for almost 4 years.  I was in "remission" for 3 1/2 years...until last week.  :-(  I'm a bit discouraged.

The Dr. in Maryville is: Dr. Lawrence Bararducci.  

I hope this helps.

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1272082_tn?1343107140
One other site I'm on has a running discussion about different illnesses.  It seems that allot of us have endometriosis and poly-cystic ovary.  It makes you wonder if there isn't some connection there.  There is question as to whether there is some type of immune issues.  One girl is (by her own words) is the guinea pig for doing plasmapheresis.  She seems to think she is feeling allot better and she has poly-cystic ovary too.  Just throwing something else out for you to think about.  I too seem to have the hyperadrenic type of POTS and so does the other girl that's our guinea pig.
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Avatar_m_tn
i believe i had pots and ist together. it went away by doing breathing exercises and some other stuff. as i understand, it did not fix itself and did not want to go away.

i was very disabled, i could not stand up without getting dizzy and heart racing.

as i understand IST isnt a diseases or is it? well, i had done ALL TEST, echo 2 times, treadmill test, resting ecg, mri scan, ct scan on heart all normal.

i still get premature ventricular beats after working out and resting. but i am afraid of working out now. i believe IST might come back or that SVT tachycardia that i had.

when i had IST the premature beats happened much more frequently.

i still dont understand what CAUSED IST for me, but i believe i got it the same time as my SVT started or maybe triggered IST.


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875426_tn?1325532016
SVT is when the electrical impulse goes haywire, not coming from the right place (supraventricular) and the tachycardia happens.  

IST, on the other hand is not from an irregular electrical impulse, but is sinus tachycardia which can occur for no apparent reason whether at rest or in an upright position.  

You said you had all tests- but I didn't see you list a holtor monitor- did you get one of these tests done?

You also said you could not get up without getting dizzy or your heart racing.  At that time, were you keeping well hydrated or did you tend to be someone who didn't drink much liquids?  Did you get an iron panel to be sure you were not iron deficient?  How long did you have your symptoms?  Did you get diagnosed with P.O.T.S. or suspect you had it without having it confirmed by a doctor?  It is said that P.O.T.S. in some can go into remission.

I.S.T. is considered one of a constellation of potential symptoms of dysfunction of the autonomic nervous system or dysautonomia.
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