Misdiagnosed w/POTS - I Would Like Actual POTS Patients' Opinions

[OnTheFence142]

Hi All,

I have recently been diagnosed w/POTS after a + TTT.  It didn't induce syncope but rather the diagnosis was based on a severe bradycardia after I was put back into the supine position (after nitroglycerin was administered).  I don't think I even needed a TTT; my symptoms are all intermittent:  muscle weakness/heaviness and shortness of breath when speaking (but not with physical exertion), along with upper body tremor and vocal & facial tremor.  I have hyperventilated (from terror when my muscles don't work properly) which has brought me to near-syncope (rarely) but I've never fainted.  I have had a sudden onset of high resting heart rate which makes me feel incredibly awful to the point of non-functional.  The main reason I don't think it's POTS is because a) my heart rate has actually fired up while I am laying flat at rest -- right out of the blue and b) I had similar symptoms a few years ago and was subsequently diagnosed with hyperparathyroidism (unrelated to the symptoms).  However, after parathyroidectomy all of my symptoms went away completely for 11 months.  It was like a new life!  Now they've come back with a vengeance - fairly sudden onset.  I have a +ANA in centromere pattern (associated with limited scleroderma -- although I only suffer from Raynauds, no other clinical symptoms of scleroderma).  Neurologist told me this is absolutely an autoimmune problem.  Rheumatologist told me this is absolutely a neurological problem (classic, right?)  While waiting on a new neuro dr appointment I went to the cardiologist to rule out cardio in the meantime, and now this is the label I've ended up with.  

As 'experienced' POTS patients, can I get your take on this?  Would POTS symptoms COMPLETELY disappear for almost a year and then come back?  I thought that you don't experience POTS symptoms while lying flat (and my racing heart doesn't always decrease when I lie down).  I also feel at my very best in the morning, and I thought POTS symptoms are worse in the morning.  The only thing I have that rings true to POTS is a definitel intolerance to standing still for long periods.

All the water, salt and rest in the world doesn't have the slightest effect on my symptoms.

MG was suspected but that has been ruled out.  Currently have plasma/urine tests pending for pheochromocytoma.  

I would so very much appreciate your opinions because I think it's the patients -- not the doctors -- who can often times give the most insight from personal experience.  After reading this forum, you all have my utmost respect.

[oldtrout466]

Hi I am not a POTS pt -so sorry to start with  -infact i have just posted a question about diagnosising POTS myself. However after having tachycardia for 5 or 6 years and working through diagnoses I know how frustrating it is. I don't know enough about the other conditions - but one of the things i wondered if I had was Inappropriate sinus tachycardia - it would start at the slightest stimulation of the autonomic nervous system - talking, laughing, getting excited or angry would all leave me feeling breathless and jittery and unable to speak or concentrate yet I could still exercise -but did often feel tired afterwards. I would get it in the middle of the night when lying still. Now some of mine appears to have been due to an entirely different cause - I had a femoral arterial-venous fistual -so basically my circulation was wrongly routed and putting strain on my heart - but my cardiologist did suggest that it could have caused these IST symptoms. I have had intermittent Raynauds - but R's is usually a symptom of some other underlying disorder. Don't know if that is of any help?

[Jshelton1998]

I'm currently getting ready to take my ttt test so I don't know if I have pots but from my symptoms and research u can have symptoms while laying down just worse upon standing and most actually don't faint unless really sick or meds or something that throw your body more off balance and yes pots can have flare us and somethimes u have really good day where u feel normal. Some research show your born with pots just a point in your life throws u off because its dysautonomia. Hope I was help full at all and pots has ties with other illness like eds or fibromyalgia and sinus tachycardiac.

[LivingInHope]

Many people with POTS don't faint.  The only time I did was with nitroglycerine during a tilt table test.  I've read that POTS can go in remission, though for me, I don't think it ever fully has.  But sometimes, I feel worse than others.

Your abnormal catecholamine and metanephrines while not being definitive for pheochromocytoma reminds me of my own case with those kinds of tests.  What happens with POTS is those catecholamines are working extra hard.  I was diagnosed with IST prior to having POTS (inappropriate sinus tachycardia, known as IST is sinus tachycardia that can happen whether upright or at rest), but know that standing at times and mild activity can make my heart rate jump!

But the fact that you feel rest, salt, and water don't have the slightest affect on your symptoms would lead me to think it's possible you do not have POTS.  I know for myself, at least, all those things can definitely have an affect my symptoms.  Likely you are having both an immunological and a dysfunction of your nervous system.  I hope you can find answers!

[OnTheFence142]

Hi, and thanks for your comments/thoughts.  I think the only reason for any pre-syncope and it's only been once or twice is from hyperventillation.  It never happens anymore as I've been living w/the muscle weakness for so long that while I don't like it, it doesn't terrify me the way it used to.  I don't think the pre-syncope is related to my heart rate.  I never 'feel' bradycardic and for all the times (and it's a lot) that I check my heart rate when I'm not feeling well it's always high, never low.  

I don't have high blood pressure but I have every other symptom of pheo but just got those tests back and while some #s are elevated they are nowhere near high enough for a pheo.

My POTS was also diagnosed by and electrophysiologist and while I may have it, I just don't know if I'm sold on the fact that it's the cause of all my symptoms.  My muscle weakness is extreme at times but waxes and wanes.  I'm in the process of neuro testing now.

I feel like I've had every cardiac test from top to bottom and I'm not sure there's any reason to suspect thrombus so I'm guessing that's why my cardio didn't do a D dimer test, but it's a good point and I'll ask him.  

I really appreciate your thoughts...  it's always nice to bounce this stuff around with people who know.  Every time I ask doctors random hypotheticals their hackles go up.  I'm just trying to be educated/informed!  :)

Good luck to you too.

[DNP47]

My POTS is definitely worse in the morning, and at night for some reason. And I have had tachycardia sitting, lying, standing....however it increases a lot when standing suddenly so thats why we came to my POTS diagnosis after my +TTT.

What I think is suspect is that you were bradycardic when you were laid down, that just doesnt seem to fit a POTS patient, but hey...when does anything related to our condition make sense?

Are you positive that your heart rate is high when you have your pre-syncope? I say this because there is a condition called sick sinus syndrome, which is characterized by tachycaridia and bradycardia. You can pass out just as fast if you are bradycardic.

Is your blood pressure really high? Have you had pounding headaches? Neck vein distenion? Brain fog? All these things would point to a pheo.

You say you have a pain high in your thigh? Have you ever had a D-Dimer drawn?

Good luck to you, my POTS was diagnosed by my electrophysiologist.

[OnTheFence142]

Thanks so much for your response.  YES! at this point anything is helpful.  Can you tell me how and by what type of doctor your condition was diagnosed?  Did you ever have any pain?  I occasionally get some discomfort on my right uppper thigh (I think that's around where the femor artery would be); it's been pretty persistent lately but it comes and goes and I feel like I can't keep reporting every ache, pain and twitch or they'll call me a hypochondriac.  If you could give me more details on your situation I would be so grateful.  Thanks!

[RufioShaw]

Pots-

Tachy on standing (from 70 sitting, 120-130 standing)
Nausea (especially in the morning)
Blood pressure lows
Dizziness when standing
GI issues
Stomach pain (in the morning)
Muscle weakness
Brain fog (hate this one)
Chest tightness
Diarrhoea
Weakness (especially in legs)
Fatigue
Vision problems
Anxiety
Heart palpitations
Shortness of breath
Shakiness
Tinnitus

The joys of having pots. Mind you I don't luckily have all of this at the same time. I don't do this list to garner sympathy for myself but Hopefully having a list may make it easier to understand for you.
Best of luck with getting better.

[Mystcl]

I have many of the same symptoms. Shallow slow breatha laying down, fast heart rate, fatigue, muscle weakness, usually get a cough, bad headaches, dizziness, joint pain, and more. After having every test under the sun, 8 doctors and a year later I was diagnosed with Chronic Fatigue syndrome by a Neurologist.

[Lucia2844]

What is POTS? It is  just a name for various,ever changing symptoms in the body, ALL associated with an autonomic nervous system dysfunction (ANSD).So yes,symptoms can come back or disappear for a longtime. It is a  functional disorder which allopatic medicine doesn't understand..
Read this to give you a  different prospective on it.In TCM it is called Xuedao Zheng.
http://www.itmonline.org/shen/chap6.htm