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MeganMN

Your Story That Led to Diagnosis

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This may not be something that you want to share, but I am REALLY hoping to hear some of your stories about HOW you were diagnosed.  I am feeling frustrated because I passed out at work, got admitted to the hospital, and a tentative diagnosis was made based on my cardiac monitor readings that consistently showed extreme tachycardia when standing.  I had no labs to check my adrenals or cortisol, I had no TTT, I did not have any further workup.  Is that normal?  I feel like there should be a bit more investigation to sort out what exactly is going on, before they just throw meds at me.  Granted, I am glad for the meds, but would also love to know that we are not just shooting in the dark!  Anyway, I am leaning towards asking to see an EP with the same group that comes to our area once a month.  I am also leaning towards asking for the TTT and possible some testing of my Cortisol, Adrenal Function, etc.  Also wondering about the Florinef because the Pharmacist really cautioned me about it as I had a SEVERE reaction to Prednisone 6 years ago that led to my first episode of POTS-like symptoms.  Where does POTS end and Adrenal Fatigue/Insufficiency begin?  How closely are they related?

I would really like to hear from you, though.  How many doctors did you have to see?  What tests did you have done before the official diagnosis?  I feel like it might help me to know what others have done.  The Cardiologist that I saw was super nice, but just does not seem all that concerned about anything and almost acts like the tachycardia is not real, or that it is coming from hypotension.  It is making me really doubt myself and doubt how to proceed and what to push for.  Thanks to all of you!

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After many years of dealing with this (and pretty much 1-4 faints a year since I was about 15) I finally got diagnosed earlier this year. I had to practically demand it from my PCP who was certain it was panic attacks (told me so based off flushing about 7 years ago).

He sent me to a specialist who ran no tests other than a standing test on my heart (which was positive) and prescribed me compression stockings, lots of water, lots of salt, some exercise, and Fludrocortisone (florinef), which... Surprise surprise, HELPED (from 10 dizzy spells a day to 1 every week or two provided I follow the regiment). 👍

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I went for a short run. And I mean maybe a block. Afterwards my breathing wasn't right. I felt the need to take a deep breathe and it was like the bottom 1/3 of my lungs wouldn't move.

This went on for 2 weeks, then one day I was fighting with it and my hands and stomach started to curl in on itself and my nose and abdominal muscle started to tingle. Freaked me out pretty bad. Ended up at the ER. While talking to the triage nurse I noticed my voice was high so I made myself calm down and my hands and stomach unfurled. 

ER said it was anxiety, gave me Xanax and check blood, urine, chest xray, and CO2 (the painful blood draw in your wrist). Send me home. 

After that I seen my PCP, a pulmonologist, and allergist, another allergist, ENT, dermatologist, and GI specialist. Plus 2 more ER trips. Over that year my symptoms kept getting worse. 

Finally my PCP told me I need to find a new PCP. Preferably an internist. So I did. That was about the time I discovered POTS on my own and did a poor man's tilt table. So I seen a cardiologist who dismissed it. So I did a poor man's tilt table and seen my pulmonologist and new PCP. 

My new PCP sent me to a new cardiologist. Who actually did a TTT, and confirmed my POTS. My PCP sent me to a endocrinologist who tested my cortisol (even though I wanted a plasma catacholmine test to rule out HyperPOTS)

Fast forward 6 months, I am doing loads better with medication but I am having breakthrough tachycardia, cardiologist wanted to send me to an EP cardiologist. The EP told him no. And suggested I see a neurologist who is 3 hours away who specializes. 

The specialist confirmed my diagnosis by redoing all of my previous tests and some new ones. He was supposed to see my oldest son and test him yesterday (see my post about a waste of a day). 

It has been a long 3 1/2 year journey but I am satisfied with my diagnosis, just wanting the underlying cause now. 

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@StayAtHomeMom and @kafie Thanks for sharing!  I, too, would love to have them look a little deeper at the cause, or if it is Hyper, or what.  The Cardiologist I saw sounds like he is not fully convinced that it IS POTS even though that is what all the other doctors figured.  It is frustrating to work in the medical field and feel like they just throw darts at the dart board to try and figure out what works.  Anyway, thanks for sharing.  The biggest hurdle for me today was that after the Propranolol, not only is my heart rate better, but I no longer feel like I am drowning in anxiety.  Ever since the passing out episode and hospitalization (then my mom died the next day!) I have felt super anxious and on edge.  Tonight, I feel *almost* normal for a bit. 

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18 hours ago, MeganMN said:

@StayAtHomeMom and @kafie Thanks for sharing!  I, too, would love to have them look a little deeper at the cause, or if it is Hyper, or what.  The Cardiologist I saw sounds like he is not fully convinced that it IS POTS even though that is what all the other doctors figured.  It is frustrating to work in the medical field and feel like they just throw darts at the dart board to try and figure out what works.  Anyway, thanks for sharing.  The biggest hurdle for me today was that after the Propranolol, not only is my heart rate better, but I no longer feel like I am drowning in anxiety.  Ever since the passing out episode and hospitalization (then my mom died the next day!) I have felt super anxious and on edge.  Tonight, I feel *almost* normal for a bit. 

I get that super anxious feeling. Like my body is having a panic attack without my brain. That is why I wanted to rule out HyperPOTS. That being said I doubt I have HyperPOTS at this point because my midodrine helps. It seems like it doesn't normally help people with hyperPOTS. I could always be wrong though. 

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I think most people have a little bit of both types of POTS.

I have a fair amount of anxiety and for me that's kinda chicken and the egg.

That said, if you have underlying anxiety, POTS can make it worse and some medication used for POTS (like beta blockers) can actually reduce anxiety. And with that all said: docs are likely to confound the two... to the point that a lot of us are misdiagnosed with anxiety (in my case I do in fact have both) because anxiety can cause faints (and I think the faints are more likely to bring people to the doc than the lightheadedness (my mom has this problem too and is certain it's just dehydration... I'm not so sure but it's her body so if she doesn't want to address it that's her business - she's only had 1-2 faints in her lifetime, so I guess it's not a big deal for anyways... But I have my theories that it's something in our genes).

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@MeganMN - 9 years ago I was a healthy person, working Mom, RN. September of 2009 I started feeling like something was off and started feeling faint. In November of that year I ended up in ER for chest pain and tachycardia. They put a 24-hour heart monitor on. The next day at work ( cardiology ) I felt faint, BP 160/110, HR 150. I passed out, admitted to hospital ( same unit I was working on ). Next day stress test - failed due to fainting and tachycardia. My 24 hour heart monitor showed tachycardia 130-160 for 3 HOURS before fainting. So - my PCP sent me to cardiologist, had TTT ( showed neuro-cardiogenic syncope ) and several different cardiologists with varying degrees of ignorance and incompetency made my life miserable. The only good thing in that time was my PCP who had witnessed many of my episodes and needed no convincing that my symptoms were real. Then came a year of regularly passing out at work/ stores/ home etc … and then the fainting turned into seizures ( autonomic seizures, not epileptic, proven during an episode caught while hooked up to EEG ). I did all of my research and figured out that most likely I had hyperadrenergic POTS and asked to be referred to autonomic specialist. One year later I had my diagnosis and was in the competent hands of my specialist. --- So - that is my story. Today I am disabled but have not had ANY episodes since starting weekly infusions at home. I am on many meds and still am severely limited in my abilities but my quality of life has greatly improved due to the IV fluids. --- Due to my research in the early days and the wonderful PCP that stood by my side I was able to get diagnosis in just 2 years. And because of my genius and patient specialist I eventually found the right meds to be able to function at all and stop the episodes. 

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@Pistol Thank you SO much for sharing!  What a rough road!  I am thankful that you have not had any more episodes, but unfortunately at the cost of lots of meds and decreased quality of life.  This whole think is so scary and I read and read about it and see all the time about how it does not increase mortality, but it has MAJOR quality of life effects!  That is the most distressing part.  Did any of you with adrenergic have flushing episodes?   I have had those for YEARS but never put the two together.  Thanks again for sharing!!

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@MeganMN - I myself may flush here and there but never a big issue. I do know though that flushing and POTS symptoms can be related to MCAS ( mast cell activation syndrome ). Best to check with your doctor. I saw an allergist to be tested for this, just so it could be ruled out. It's blood test and urine sample. 

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Thank you, for an appointment mid-January with an EP so we will see where that goes.  Wondering if I should keep some type of journal of log between now and then.

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That is an excellent idea. I used to have a running list of symptoms and concerns that I would take to my doctors, then I would go down the list and knew that all was addressed. And I would keep the lists so I could also go over it with my POTS specialist when I saw him. There are so many symptoms with dysautonomia that there is no way to remember them all. 

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Well, took my first dose of the 10mg Propranolol today, they wanted me to take 30mg twice a day, or less if I get too slow.  I took 30mg this morning and 20mg this evening and other than kind of sleepy, have felt amazingly normal today.  Hope it continues!!!

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