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On 12/10/2018 at 1:27 AM, StayAtHomeMom said:

I hope you feel better soon. Maybe you will get lucky and it won't be lifelong. Any medication ideas yet?

Not yet. I’ve noticed benzos do help a little. Not sure what that means?

On 12/8/2018 at 9:35 AM, StayAtHomeMom said:

Did you have a illness or injury that triggered yours at that age? Most of my research has shown it usually starts younger but it doesn't seem to be ruled out just because you are older. To me it seems more common in people in the 20s. 

Not that I'm aware of. I suppose I could have caught a virus of some sort but I'm really not sure?

On 12/7/2018 at 8:39 PM, StayAtHomeMom said:

It can be a little overwhelming at first but once you have a handle on all the information it isn't too bad. Sounds a little unusual you would get POTS at 44. And being male (odds are less). When it started had you just gotten sick or were you laid out from an body injury?

Nope, just apparently crept in from nowhere. Very strange.

Thanks @bombsh3ll !

I actually had already left mayo before the results of the TTT came in. So I was already back on the other side of the country when they called to explain that they thought I “might” have pots. 

I did in fact get an ANA which was negative. My markers for inflammation were also very low. And I don’t think I have EDS. I’m a 44 y.o. male for what it’s worth. I’m extremely intrigued by what you say in regards to catecholamine levels and Pheochromocytoma. This is all so new to me. Would my chest X-Ray have discovered Pheochromocytoma?

I have indeed found a specialist and have an appointment in one month’s time.

Hi @StayAtHomeMom

I visited the Mayo in Arizona, not the main one in Minneapolis. I mostly went for fatigue and nausea. It seems that Pots - at least as a secondary cause - helps to explain my issues. So I’m grateful they uncovered that. I would say overall that yes it was a positive experience, but like I said, I had already went back East when the TTT results came in, so I never really had a chance to engage their autonomic specialists.

Thanks again to you both. All this info is incredibly helpful.

Thanks you so much @bombsh3ll - very kind of you to take the time to give me such a thoughtful response.

To answer your question I was not given any treatment options at Mayo because I'd left already. (When they called to tell me about the TTT result they simply suggested salt tablets, extra water and compression socks).

Other tests I had at mayo were an ECG, Echo Stress, Overnight Oximetry, CT of Abdomen and CT of Chest, Some Urine and Blood Tests although not so sure they were tied to POTS)

What are the other major tests I should have done to rule out underlying causes?

Thank you so much.

Hi everyone. Nice to meet you. Although I wish it was under different circumstances.

Two months ago I received a POTS diagnosis from Mayo in Arizona.

I went there complaining of fatigue and new nothing about Pots.

They didn't have any results when I was at Mayo, so I came back to New York and they called to tell me the TTT results.

The Mayo doctor characterized it as "mini pots" but ever since then I have started to feel much worse with terrible anxiety, brain fog and balance issues.

Being that this is such a great place for information I'm curious what you think of these TTT results?

Also wondering if anyone has heard of / been to see Dr. Depace in Sewell, NJ? (I noticed he's not on the doctor list)

Thank you very much.