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Undiagnosed pots

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My electrophisogist was thinking I may have a type of dysautonomia. He didn’t say specifically what he thought but he wanted me to start treatment now and confirm with a tilt table test. Through research I found out he was treating me the same way he treats pots patients. Increase fluids to 2-3L a day, increase salt by 3 palmfuls a day, start on a beta blocker, eat smaller low carb/high protein meals a day, and wear waist high compression stockings. My symptoms have been getting worse. Severe fatigue, muscle weakness, increase in heart rate when standing and doing any type of work, exercise intolerance, heat intolerance, headaches, shortness of breath, chest tightness with exertion, and on top of that I have IBS-D. I’m only 28, I shouldn’t be feeling like I’m 70. 

I did my tilt table test and that was terrible. When the iso was given, I felt like I couldn’t breathe. I was having severe difficulty getting a breath. My hands started to cramp shut and I couldn’t move them. They called the doctor in and he looked at them and thought it was weird. They were tingling from my forearms down and turned purple. I got tetany in my hands and calves and he said it was from hyperventilating and a depletion of potassium but has nothing to do with the test. It was very concerning for me and then I vomited like 4-5 times. 

Without medication my resting hr was 70s laying down and the highest standing was 130s which was positive. He said it looked like pots but could also be from dehydration. My other doctor came in and said my test was negative because I didn’t pass out. He said it could be my natural pacemaker is sensitive to adrenaline and he wanted me to start the treatment he set forth for me at my previous appointment. He didn’t give me a diagnosis which is frustrating because originally he wanted me to get a neurologist consult. I’m not a doctor but it looks like a standard case to me. What does everyone think? Is a diagnosis important? Should I wait it out and see him in 4 months like he wants or should I go ahead and follow my gut, find myself a neurologist and get a diagnosis and get to the botttom of it?

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Guest KiminOrlando

Had you started the meds and stuff before the test?

I want feedback from the crowd on this one. 

It really, REALLY bugs me when docs start treatment (beta blockers, salt, fluids, compression garments) BEFORE the TTT, then tell you it is negative because you didn't pass out.



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Kim, I agree!  The girls started on the Florinef AFTER the TTT.  Then you don't have to worry about stopping it and then restarting. They were evaluated at Stanford's Autonomic Clinic and their doctor didn't require them to pass out.  My oldest's blood pressure stayed the same and her heart rate went up at least 40 points, never passed out but got real lightheaded.  Her vertigo kicked in to full gear and the doctor was watching that.  He was surprised.  My youngest's blood pressure went sky high and her heart rate went up 30 points.  Not a typical reaction, but he said she had POTS.

Seriouslyjen,  I would say that your reaction to your TTT sounds about standard, unfortunately.  My girls had a cardiologist (after their TTT), that had absolutely refused to test his possible POTS patients with a TTT.  He said it was barbaric!  That's about right!  I can't believe they are blaming it on dehydration.  From the sounds of your post, it doesn't sound like that was the case at all.  I have a hard time grasping the fact that doctors still don't know about POTS!  How hard is it, people!!  After my daughter's recent spinal fusion surgery, the PT had the goal of getting her up and about.  She was just learning to balance her new back full of titanium and said she was dizzy and lightheaded.  Think this was POTS and not her vertigo..  I told the PT several times that she will pass out, so be ready to catch her.  Well, she did pass out, they weren't ready, and so they heave-ho'd her onto her bed at which point she passed out for even longer.  Shortly thereafter her neurosurgeon came in and wondered what happened.  Being that he had just spent 8 hours putting her together, he was not amused.  He left my daughter's room and stormed down to the PT and told them that they had better start being more careful with his POTSy patients!!  That really explains why all the therapists seemed so nervous when they came back to our room!

Long story short, I would pursue a POTS diagnosis if you can.  Sounds like this guy doesn't know enough about POTS and that most POTSies don't pass out completely.  I have one that does and one that doesn't.  But, they both have POTS.  Everybody is different.  Sounds like he is trying to fit you in a textbook.  There is nothing textbook about any of us!

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They wanted me to start my treatment before my test but I waited until after.

My heart rate went up by 60 beats per minute from lying to standing and I couldn’t even focus on anything I was so dizzy. Really surprised that they didn’t diagnose me based on that. And you’re right, it is absolutely barbaric. That was my first and last time doing that... that’s for sure! Thanks for all of your input so far!

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