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New To The Forum--Confused By A Diagnosis.


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I would like to introduce myself to the board and thank you all for the great information I have received from you all while I have been collecting information.

I will try to keep this summary as brief as possible and get to the question I have for you.

I am in my early 40's and have had health issues since I was in grade school. For years I went through cycles of pushing doc for testing, them telling me they couldn't find anything wrong with me and then referring me to a psychiatrist or psychologist and/or putting me on antidepressants.

When I was 26 I had a very bad crash (after getting a flu shot) 6 months before my wedding. Six months after my wedding, I had to quit my job because of my illness. No one could find what was wrong with me but I happened to read an article on Neurally Mediated Hypotension in a magazine and a light bulb went on. I took the article to my grandparents' cardiologist and told him I thought I had it.

He did a tilt table test during which my blood pressure dropped from 120/60 to 60/40 in 13 minutes (I didn't pass out, but at that point, the nurses, my husband and I all begged him to stop the test because I felt like I was dying). My resting heart rate was 70 bpm and my peak heart rate was 109. The record from the test says that after my blood pressure dropped my heart rate dropped to 50 bpm.

The cardio told me I had NMH and put me on Toprol and told me to increase my salt and water intake. He told me that I would "grow out of it" even though I was 27 at the time. After doing some research I asked him if I had POTS and he said "no" because of what my heart rate did during the test. Keep in mind that this was 13 years ago.

To make a long story short, I recently went to a neurologist to follow up on some possible neuro issues. She told me that she was making a referral for some testing for me, which turned out to be a POTS evaluation. After reading the information on POTS, it really explained a lot about my health issues.

For this evaluation, I had another TTT. I could tell that it was different this time because, while I didn't feel well, I didn't become violently ill. I kind of expected that because I think I have learned to control my low blood pressure better than I used to. I don't seem to have severe drops as often as I used to, but my heart rate is still a problem.

I did not have access to my test result at the time I had the consult with the doctor. He told me that I had Orthostatic Intolerance (but not POTS) associated with deconditioning and relative volume depletion. He felt that I did not have the same experience on the tilt table, not because I had grown out of it, but because I am much better conditioned now than when I had it done the first time. He said it didn't really matter if my diagnosis was OI or POTS because they are treated the same.

However, when I got the test results I saw that my resting heart rate was 69 and my upright heart rate was 118, which is an increase of 49. Additionally, my supine norepinephrine was 749 and increased to 1461 when I was upright.

Can someone explain to me why I didn't get a hyperadrenergic POTS diagnosis with those results?

Thanks for any insight you can provide.

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Well, to me, it sounds like you may have seen a doctor who truly was not as familiar with POTS as he should be to give that diagnosis. Do you know his reputation for having POTS patients, for knowing about POTS, for treating it?

Sounds to me like you definitely could have hyperadrenergic with those test results, but I'm not really up on the ins and outs, but I'm sure there are others here who can be more helpful and accurate.

Lindajoy

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Hi Steph555, welcome at the forum!

I can't really answer your question just wanted to say hi and hope that you will find this a welcoming and informative place. We have lots of knowledgeable members who will hopefully give you the answers you need!

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LindaJoy,

I was waiting to see if some others posted some thoughts before I answered you because I wanted to see what their opinions were without biasing their answers. But, since I have no other repllies, I'll go ahead and tell you that the doctor I saw was at Mayo Rochester, so I would assume that he should be qualified to make the diagnois...I just don't understand why he said OI but not POTS.

Can anyone give me some input on this??

Thank you!

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So frustrating! I have no idea why your results were not clear, I would request your medical records and look for someone else who can help you. I had an EP cardio tell me it didn't matter if I had POTS or OH, I said it matters to me. I just went to a new doc today and it seemed to go well. I wish the same for you, your results seem so obvious.

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Hi Steph,

Crazy we have to meet with way. I've been at this 2.5 years post diagnosis and NOTHING surpises me anymore. I have autonomic neuropathy and crazy orthostatic hypotension, but my HR does not hit the highs, so I didn't meet the criteria for POTS. So in my case, typical POTS meds to lower HR wouldn't work for me. I do rely on fluids and salty snacks when I have orthostatic episodes.

You'd think you could get a decent clear cut diagnosis out of Mayo, but you'll soon learn that often there are differences in approach and knowledge depending upon the specialty. Was your study performed and read out by a cardiologist, general neurologist or autonomic neurologist? If you met with a cardiologist or general neurologist, you could request a second opinion by a autonomic neurologist, and have your results reviewed in consultation.

Best wishes in nailing down your diagnosis.

Lyn

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Lyn,

Thanks for your input. The workup at Mayo has tests in several areas. I had consults with a nurse practitioner in cardiology (she coordinates the POTS workups), a cardiologist, an exercise cardiologist, and a neurologist. It is a week-long work up and the neurology consult is not until the last day. All of the others defer to the neurologist...that is, no one will give a diagnosis except for the neurologist. They told me that my heart was structurally ok, set up an exercise program for me, and everyone just said "I can't really tell you anything about your results other than that I know they will be able to give you some answers and help you." No one told me that the neurologist was an autonomic neurologist, but when I looked him up his papers and classes seem to be in the autonomic area.

In my "conspiracy theory" mode, I'm wondering if part of the reason he didn't give me the POTS dx is because my testing in the autonomic neurology lab was "essentially normal." I wonder if having a person with clear cut hyperadrenergic POTS but no seriously abnormal autonomic testing entered into their database messes up their research results????

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Steph555...was your hr elevated the during the entire TTT? That's the only reason I can think of why they would call it OI instead of POTS. The first time I had the autonomic reflex screen done (I'm at Mayo Rochester - I live there) I wasn't having tachycardia issues yet and my hr jumped to around 120 but settled down after a few minutes to around 90 and they called it OI. I had it redone a year later (after I been on beta blockers for months for tachycardia) and this time it was elevated the entire time and I got the POTS diagnosis. This whole process can be so frustrating. Before I did the screen the 2nd time, I had been told by a nurse to continue all of my meds for the test. Luckily I double-checked because that didn't make sense but I still had my beta blocker the day before the test. I was worried it was going to mess up the results.

Good luck. I hope you get things figured out soon!

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Ste[h555,

Welcome to the group. I find this diverse field of dysautonomia to be much like the CVID that I have common but variable in everybody. I will share my 3 1/2 year journey with this.

Mine started as 'neurogenic cardiosyncope' (I never knew what was happening to me and for the first three times, dismissed my incidents of near syncope trying to rationalize them, until the fourth that happened with my little grandson and landed me in the hospital with a cardiologist now involved. The TTT and 30 day event monitor and trials of Rx meds showed too many ectopic heart beats and the BP drop and heart rate racing. Treatment began in spring and I tried to continue my activities through summer and winter but the incidents only became more frequent. By the next spring, they did another TTT. Even though I did not pass out, the cardiac physiatrist began treatment for POTS. I started Florinef and Aldactone (couldn't tolerate the Florinef), then but over the summer I had more and more events (now with syncope). By the following spring, my cardiologist (after trying several meds) referred me to a well-respected cardiac specialist in dysautonomia/POTS. By the time I saw him, it was fall. I had 3 or 4 true syncope and still many near syncopes.

When the specialist examined me and my records from the cardiologist, he explained to me that while I had had POTS earlier, now it was orthostatic hypotension and that my autonomic nervous system was in failure. I have been told the warnings of syncopal events would come less. I was given a lot of information about things I should do and things I must avoid. I am very thankful to know this as this will be my first summer going through this now in trying to avoid those triggers. For the times with the neurocardiogenic syncope and POTS, I was told to eat and drink salt. When the cardiac specialist saw my swollen purple feet he told me I was pooling blood and fluid and that with my situation, I need to avoid salt. I still have to try to stay very well hydrated. It is confusing and summer coming made me very nervous. I saw the specialist in follow-up this April and another Rx was added. My BP still runs low (usually) to low normal on the 2 meds. The goal is to get me hypertensive, then work on the hypertension. The cardiac specialist also told me that since my heart rate isn't responding with a surge when the BP tanks that I can anticipate the need of a pacemaker down the road (maybe due to the ANS failure). This new Rx is dropping my heart rate a little lower but I just feel tired and sometimes still get 'POTS'ish only I don't have the really high tachycardia as I'd had. Most of the time when my BP drops now, the heart rate stays between 60-80.

This has been a great support group. I've learned a lot of information about dysautonomia on DINET. It is good to find answers as confusing as they may be. We have to take responsibilty for educating ourselves and others (I'm the first patient my cardiologist has had that has been so difficult to respond to treatment and he learns from my cardiac specialist through me for other patients he may have. At the last visit he even gave me a research paper about a med he had considered trying on me to ask my specialist about while he copied the three research papers the specialist gave to me of other Rxs they may consider).

Blessings and good health.

ruby

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