New Diagnosis?

[lins98]

I’m very upset. My current PCP no longer thinks I have pots due to my change in blood pressure. Apparently pots is only a change in heart rate and not blood pressure as well. Also a second tilt table test was done and the results were inconclusive. The thing is, that I was on IV fluids continuously for a couple of days leading up to it and I had been on medication to try to help my condition for a month. The second tilt table test was done a month or two after the first. Is it right for me to be upset and think that all the doctors shouldn’t only be going off of only the second tilt table test? I am now diagnosed as having vasodepressor syncope, but isn’t that kind of the same thing as pots?

[Guest KiminOrlando]

This is why I argue that you don't get true diagnoses while medicated. It sounds like your symptoms were treated with some success, but without the meds and IV fluids, you would be back to a POTS diagnosis. 

So his argument is that he treated you for POTS and now you don't have it because he was likely correct?

 

[StayAtHomeMom]

I am kind of surprised that my specialist confirmed my diagnosis of POTS because the technician said my blood pressure dropped on my second tilt table and wanted me to wait until it was stabilized before she would let me stand and walked out. Not sure how much it dropped though. It may have only been a little.

Every technician that I have dealt with has said to make sure I am off all meds for 3 weeks before the tilt table so it doesn't skew the results. 

I would see if you can get a copy of both tilt tables and see a specialist. They would get a better read on your results. Assuming the technician recorded the data that is needed. 

[Pistol]

I am a highly symptomatic POTS patient. If I would stop my meds before a TTT I would certainly test positive. However - if I would receive IV fluids before the test I might do just fine. IV fluids should - in my opinion and in my own case - be considered as medication. As a matter of fact: I have to list them on my list of as needed meds. 

[Don]

I had my tests on all my meds.  It wasn’t safe to stop them.  My TTT was normal as was valsalva.  QSART was abnormal.  I had my tests at Mayo.  The general consensus was that my meds were skewing the results in such a way that it enabled them to pinpoint a cause to my autonomic dysfunction.  I had lots of symptoms.  I was diagnosed with autonomic neuropathy from the sheer weight of all my symptoms.  My disorder is caused by my medication.  It’s rare and complicated.  

[Pistol]

 

13 hours ago, lins98 said:

I’m very upset. My current PCP no longer thinks I have pots due to my change in blood pressure. Apparently pots is only a change in heart rate and not blood pressure as well. Also a second tilt table test was done and the results were inconclusive. The thing is, that I was on IV fluids continuously for a couple of days leading up to it and I had been on medication to try to help my condition for a month. The second tilt table test was done a month or two after the first. Is it right for me to be upset and think that all the doctors shouldn’t only be going off of only the second tilt table test? I am now diagnosed as having vasodepressor syncope, but isn’t that kind of the same thing as pots?

I have POTS and neurocardiogenic syncope which is the same as vasodepressor syncope. They are both dysautonomias. NCS was diagnosed based on the symptom ( syncope ) and in my first TTT my HR sped up, then dropped to 50 and as a result I promptly fainted. In my second TTT I did not faint but my HR went op to 150 and stayed there. So now I have them both and both cause fainting but you can have POTS without syncope. 

[lins98]

19 hours ago, KiminOrlando said:

This is why I argue that you don't get true diagnoses while medicated. It sounds like your symptoms were treated with some success, but without the meds and IV fluids, you would be back to a POTS diagnosis. 

So his argument is that he treated you for POTS and now you don't have it because he was likely correct?

 

He says that I never had POTS. That people with POTS don’t have a drop in blood pressure and don’t faint. I was fainting a couple of times a day. My heart rate did go up quite a bit in the first TTT and while it still did go up in the second one it wasn’t as drastic. 

He is actually not my PCP he is a specialists in POTS from Duke who I saw after my second TTT. However my PCP now agrees with his diagnosis and is putting that I don’t have POTS on a lot of my paperwork.  

[StayAtHomeMom]

2 hours ago, lins98 said:

He says that I never had POTS. That people with POTS don’t have a drop in blood pressure and don’t faint. I was fainting a couple of times a day. My heart rate did go up quite a bit in the first TTT and while it still did go up in the second one it wasn’t as drastic. 

He is actually not my PCP he is a specialists in POTS from Duke who I saw after my second TTT. However my PCP now agrees with his diagnosis and is putting that I don’t have POTS on a lot of my paperwork.  

Did he say what he thinks you have instead? 

[lins98]

1 hour ago, StayAtHomeMom said:

Did he say what he thinks you have instead? 

Vasodepressor Syncope 

[StayAtHomeMom]

Heart rate can go up in response to low blood pressure. I imagine treatment is going to be the same. 

My 15 year old son is showing signs and symptoms, but I want to get him on a TTT to be sure because his blood pressure will drop sometimes. I am hoping his is something he can grow out of. 

[Guest KiminOrlando]

I fainted on my TTT. My heart rate went up and BP went down. My doc called that neurocardiogenic syncope. They may have renamed it since then. I think my doctor said they are rethinking how they classify things now. So, if things weren't already confusing enough.. 

[GasconAlex]

On the definitions I've been told POTS cannot have a significant fall in BP. If you have a significant fall in BP then it counts as orthostatic hypotension (with or without an increase in HR) and POTS is an orthostatic related increase in HR of 30bpm or over 120bpm without a significant decrease in BP. Both are dysautonomia, and both have underlying causes. It doesn't matter what they call it - what matters is how they treat it / you cope with it (or not). If your doctor is still offering treatment then you might as well try it. If your doctor has called it a day I'd find another doctor!

 

I agree on the drugs skewing the results, but many people cannot cut out the drugs before the test so hopefully they take this into account.

[Gorge-US]

I'm sorry...The worst part is not knowing. Oregon doesn't do tilt table test at all anymore because I needed one. But they come up inconclusive answers to often. I really don't think they should go off that one test. First of all my PCP won't diagnose me because by body has been so crazy coming up with all these new symptoms, I started with Cardio, then Kidney Doctor ( he thinks it POTS) so does my PCP now but I still have to go to Neuro.  Maybe you should see a neurologist because the autonomic nervous system is in there wheel house. Right???