Dysautonomia (Autonomic Dysfunction) Community
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Just found this site this am. Recently diagnosed with dysautonomia/POTS after 3 trips to the ER and being ill for quite a while with multiple syptoms (symptoms). Very interested in meeting/talking with others with the same/similar condition. Can't do much without intensifying syptoms (symptoms). Trying to find specialist that I can actually see with my insurance that understands the condition. Have accompanying low adenal levels which I think is adding to the symptoms also. Am going to address that issue with my new primary doctor next week.
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726204 tn?1285879778
Hi, there are several of us here whom have POTS and who can relate to your symptoms and frustrations.  Feel free to post here anytime with questions or just to say hi.  

Take a look at the link below, it takes you to one of our health pages giving info on dysautonomia specialists - maybe you may be near to one of them:


How were you diagnosed?  Did you have a Tilt Table Test?

Which of your adrenal hormone levels are low?  If you have low cortisol and sometimes low aldosterone this can cause POTS symptoms.  If this is the case treating this would hopefully resolve your symptoms.  

What treatment have you been put on?

Someone else here may be able to give you specific details of a specialist near to you and give you advice on your insurance.

1369319 tn?1304636026
Thank you :).

I was diagnosed with a tilt table test. 147 bpm in less than 10 mins. I have multiple other symptoms of POTS which would take way to long to cover :(.

I don't know exactly which adrenals are low. When in the hospital one of the doctors told me that my adrenals were 'very low'. He said not to a dangerous level yet but definately need to be looked into. I reported this to my primary but he has done nothing to follow up on that yet. I am going to persue that with him again this week now that I have done some research and realize how important it is! However, renal deficiency does not cover all of the symptoms I am suffering, whereas POTS does. At least judging from the research I have been doing all week. (?) But I am sure that treating the low adrenals would greatly improve some of my symptoms for sure, since it causes a lot of the same symptoms!

The cardiologist who did the tilt table test put me on bisoprolol fumarate 2.5MG and fludrocortisone 0.2MG. But these medicines made me extremely ill and I had to discontinue them. Although he diagnosed the POTS and says that he "treats many patients for this" he only wants to deal with the tachycardia and thinks my other symptoms are other issues and need to be dealt with through my primary physician.
Which leads me to believe that he doesn't really understand POTS at all!
Not to mention that he prescribed the fludrocortisone without telling me to increase my fluids or to increase my salt intake. In fact he sent me home on a cardiac diet which is no salt!

It is all very frustrating and I am very emotional anyway, which doesn't help. But then both low adrenals and POTS can cause depression.

560501 tn?1383616340

    Hello and Welcome to the Forum :)  Sorry that you have to be here though!
while I do not have POTS, I do have NCS and can relate to having an Autonomic Dysfunction interfere w/ your life. also have Multiple Sclerosis...So, when one is not acting up the other is or sometimes they like to play together..Lol

    WOW!  Sounds like you may need to find a new Doctor.....Perhaps one that will actually talk to you and explain things...And , OH YA.....One that will not give you meds w/out telling you about them!  Sent you home on a Cardiac Diet???? WOW!

    Good for you though in doing your home work on your condition :)  it is very important to be your own best advocate!!!  Are you on any new meds now??

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