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Introduction and Recommendation of a Dr. in NY (?)


Pepperrose

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Hello everyone, 

I’m new to Dysautonomia, although I think I’ve had POTS for most of my life, it just didnt seem to cause major issues when i was young, except for low bp and fainting at times, light headedness , lack of ‘energy’ -which I thought it was ‘my non athletic nature’ although it always puzzled me why I could not do what my friends did.

But the symptoms became incredibly worse after pregnancy and giving birth, to the point that I’ve been only in ‘survival mode’ all these years,  almost completely disabled at times.  Barely surviving. Needless to say,  it has not been fair to my family who need me well and functioning and so frustrating for me as i wanted to enjoy them to the fullest extent.  After many years (and $$) of consulting with different drs, to not avail, not finding a cure or true explanation to the horrendous fatigue, weaknesses, and other symptoms,  only to have all the physical exams and testing coming back “normal” , a friend pointed out that it could be Dysautonomia.  

So here I am, looking for a reliable specialist in my area.  If anyone knows a dr that can be trustworthy in NY/NJ area, please kindly share the name with me.   I’m hesitant to go to just any random physician at this point.  It’s been a long road.

Any help or hint that you could please share with me, will be deeply appreciated.  Thank you for your time 🙂

 

Ps:  Sorry for the lengthy post

 

 

 

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Welcome to the forum.

Your story sounds similar to mine.  I had symptoms when I was younger and was always non-athletic, but chalked it up to it not being my thing.  At times would have more severe symptoms that doctors told me were caused by anxiety.  When I was pregnant in my 30s I became disabled by POTS, which worsened post-partum.  I was finally diagnosed and when my child was a year old I was able to return to a somewhat normal lifestyle.

Here is our list of physicians which might help:

https://www.dinet.org/physicians/

The things that helped me the most have been fluid and salt loading, reducing sugar/carbs and increasing protein my diet, (I am a vegetarian mainly), low dose beta blocker.  Recently I had another bad POTS relapse and was found to be B12 deficient.  I do not think this was ever tested in the past for me.  After getting shots and taking large doses of B12 I am feeling a lot better again.

 

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8 hours ago, MomtoGiuliana said:

Welcome to the forum.

Your story sounds similar to mine.  I had symptoms when I was younger and was always non-athletic, but chalked it up to it not being my thing.  At times would have more severe symptoms that doctors told me were caused by anxiety.  When I was pregnant in my 30s I became disabled by POTS, which worsened post-partum.  I was finally diagnosed and when my child was a year old I was able to return to a somewhat normal lifestyle.

Here is our list of physicians which might help:

https://www.dinet.org/physicians/

The things that helped me the most have been fluid and salt loading, reducing sugar/carbs and increasing protein my diet, (I am a vegetarian mainly), low dose beta blocker.  Recently I had another bad POTS relapse and was found to be B12 deficient.  I do not think this was ever tested in the past for me.  After getting shots and taking large doses of B12 I am feeling a lot better again.

 

Thank you for taking the time to respond,  MomtoGiuliana.  I’m glad that you’re doing well again after the B12 supplementation.  Yes, our stories sound similar,  I’m happy to hear that you were able to get help fairly soon after having your baby.  I wish I would’ve been able to do it sooner, for some reason that now I cannot comprehend it didn’t occur to me to see a cardiologist or to relate the symptoms to that field.  After having the tests coming back normal, and being a first time mom as well, I even assumed at some point that maybe it was just the way it was supposed to be, as I heard the new moms complaining of ‘tiredness ‘ but of course, in my case it was disabling.

I will surely check the list of physicians.  Thanks for the recommendations as well.

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