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Recently Diagnosed With Pots


snow4fun

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Hi,

My doctor just told me that I have POTS. My pulse goes up 32 points when I go from laying to sitting. I am having very low pressure. I am severely dehydrated, I have intolerance to any type of exercise, intolerance to carbs, sweating, cold intolerance, confusion and inability to handle stress. I was recently diagnosed with Ehlers Danlos but I know that is not the cause of the POTS. I had some cortisol test and I had a high midnight saliva reading and a low a.m. reading. My Endocrinologist told me it was "stress" but I know it isn't. I also had a glucose tolerance test which showed reactive hypoglycemia.

What advice do others have as far as getting a correct diagnosis?

Thanks and God bless you,

Deborah

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Hi snow4fun

Welcome to the forum.

There are quite a few people on this forum with both EDS and POTS--although I think the mechanism isn't really clear EDS is considered one cause of POTS.

As far as the saliva test, I had these tests as well when my POTS symptoms were severe--recommended by a naturopath. My endocrinologist at the time told me that it is hard to know from these tests if there is a problem or not. Cortisol levels are very changeable due to many factors and rise and fall naturally/normally.

Reactive hypoglycemia is reported by some POTS patients.

Determining the cause of POTS can be difficult. Many patients do not know the cause of their POTS. Some patients may go to POTS clinics at universities or other medical centers for more specialized testing.

Hopefully the dr who diagnosed you will work with you to find treatment that helps best. It can take some time to find the right treatment--there are various options that are possible--and different patients respond differently depending on their symptoms, etc.

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EDS can cause flacid vasculature which can be the reason for POTS or can significantly contribute to the syndrome if there are other underlying causes. Anything that helps maintain BP tends to help in that respect. Compression stockings, fluid and salt loading, florinef, midodrine for some.

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Thanks for the replies.

I have tried the florinef and midodrine and both made me worse. Right now I am having infusions three times a week to stabilize my bp. Is there anything that I can take at home that will help with the severe dehydration? How do you salt load and what compression socks do you recommend? I believe this is a high cortisol issue.

Thank you

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