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marymonet
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Hi,

I am new here. My daughter is 23 yrs old and has POTS. She has been sick for many years, but was never diagnosed until now. She also has Addison Disease. Right now she is in the hospital because of her heartrate. Last week she had a stomach virus and became dehydrated and her heart rate went crazy. I am trying to read all the information on POTS.

We are also looking for a Doctor in NY who treats POTS. I am also having trouble understanding some things, so maybe you can help me. What is the difference between POTS and dysautonomia? My daughter has Tachycardia, does that mean something is wrong with the heart itself? She goes into hypovolmic shock just from being dehydrated and she gets dehydrated without vomitting or anything that usually cause that. I am sorry for all the questions. In one way I am glad that the doctors have finally gotten to the bottom of it. Before her diagnoses, everything was blamed on stress, she felt like she was going crazy! I can't wait for her to come home and come to the forum, and to see that she is not alone anymore.

Thank you

Mary

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Mary,

Hello and welcome! You and your daughter are definitely not alone! I am glad to hear that she has a diagnosis - living with others telling you it's "just stress" would be horrible! We look forward to "meeting" her as well.

I probably can't answer all of your questions but will try to answer a few. Here is a link to a website that explains dysautonomia well. http://www.ndrf.org/ The term dysautonomia is more of an overarching term. (POTS is a form of Dysautonomia) Dysautonomia refers to the dysregulation of the autonomic nervous system.

Our heart rates are (one thing) regulated by the autonomic nervous system (ANS) so our organs are fine - they just aren't communicating correctly and our heartrate gets mixed up. (there are more specific reasons such as when our blood pressure drops our bodies try to raise the BP by a faster heartrate...but I might be getting into too much detail)

Hopefully some others on the forum will be able to point you to a dr in your area. What part of NY are you in?

I hope this helps answer some of your questions. I am confident that you will find this a warm and helpful environment here at Dinet.

Take care and I hope your daughter is home soon!

Lisa

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hi mary,

to comment on your daughter going into "hypovolemic shock", if she has addisons disease, this "shock" is probably more or less what they refer to as an addisonian crisis. this crisis can be instigated or triggered by many things, and definitely a stomch virus can trigger such a crisis. your daughters problem with tachy probably stem more from her adrenal glands not working properly (from the addisons) and not necessarily from hypovolemia issues. but i can only comment so far on that as i dont know your daughters full history/med evaluations....

as to whether your daughter's tachy is from an actual heart problem or from pots, if she has had a cardiac follow up and all was fine there, i would bet money that her tachy problems are from her addisons disease and not necessarily from POTS. i dont know your daughters full history, so i can only comment to a certain degree........but i DO know that one of the conditions i was tested for before i was ever given a diagnosis of pots was addisons disease. your daughters tachy is probably not from POTS but more from her adrenal glands not working properly....POTS is only diagnosed after ALL OTHER causes/conditions that mimic pots have been ruled out. addisons disease is certainly one of those conditions that mimic pots and from your post, it sounds like your daughter has had positive diagnostic results of her adrenal glands....

good luck. i hope your daughter starts feeling better soon.

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Thank you for all your replies. My daughter has been in and out of the hospital since she was 6 years old. Mostly GI problems and othostatic blood pressure. She would dehydrate alot. She never really had a diagnosis, they just treated the symptoms. She would often go into shock because of the dehydration. When she was 20 years old, she had her gallbladder taken out, six months later she had another surgery for a stone stuck in her bile duct. She always had a GI motility problem and they said that it was part of the reason the stone got stuck. It was than her periods stopped, her blood pressure was very low, alot of different symtoms that didn't seem to match. They took a cortisol test and found out that her body was almost making no cortisol at all. The doctors were not sure if it was Primary Addisons or Secondary Addisons disease. It's hard to test once you start the patient on cortisone treatment, but in her case they could not wait. The last few years we have seen many DRs trying to figure out, why she was not getting better even though she was on cortisone, which is the treatment for Addisons. Her heart was always racing, especially when she changed postions. Her GI and bladder function was effected. She ran low grand fevers, night sweats and mirgrane headaches. Alot of Drs just said that it was emotional and the way they said it cut her heart like a knive. Finally the tilt test and a Dr who really looked at the whole person and listened and put the connection with all her symtoms. Sometimes its the not knowing, its the feeling no one believes you can be the worst part. Its just so good to talk to people that understand, I am so glad I found this forum.

Thanks for listening

Mary

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As a mum I feel for you. How distressing to see your daughter go through so much. Doctors can be very unfeeling when they say it is emotional. I think they say it because they can't figure it out. I am glad that you finally have a diagnosis. Addison's is serious, but I believe that it is very treatable with medication. As for POTS, there are no easy answers, everyone seems to have different symptoms. However, there are lots of tips on how to manage it on this site and you will receive lots of support, which really makes a difference. I have seen my own kids in hospital many times, but nothing as serious as your daughter, so I have a little idea of your journey. Hope you will find answers and strength. Take care.

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hi mary,

i'm glad you found us, although i am very sorry that you're daughter is so sick. you will find lots of information on this site and lots of people (from all over hte world) that UNDERSTAND and know how you and your daughter must feel. i hope this will help the both of you!!!

corina :(

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HI,

Sorry to hear about your daughter being so ill. Think checking the listings on here and dynakids especially is a great way to start. I do know there is a Dr. Julian Stewart, (you can google or yahoo the name and get a connection to the website) treats pediatrics/adolscents and I think he might see some in their 20's. Up in Valhalla, NY, upper part of Westchester as I believe. Dr. Stewart I've heard is very good.

Good luck. :(

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Hi Mary,

Just wanted to welcome you. I also have a daughter with POTS (21 yrs. old). We've known since she was almost 16 yrs. old.

It IS great to finally know what you're dealing with.

This forum is the best, we've gotten so much information from here that we otherwise wouldn't have. Go to the bottom left of the page where it says 'search topic' if there's something specific you'd like to find, and of course, keep asking questions!

Take care,

Patti

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Hi, Mary:

Welcome to the forum! I'm so sorry to hear that your daughter is facing such a struggle with her health. This place is a wonderful gathering of empathetic and knowledgable people. I'm still new to POTS myself, but just knowing that someone out there is making it through this illness and hearing success stories of those who have beaten POTS is such a source of hope and encouragement.

I hope your daughter feels much better and is home from the hospital soon!

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She is not alone and she should know that there are alot of resources and alot of support here for her. She should also know that many members of this forum have performed extraordinary things even though they have POTS. They inspire me everyday and I hope that she will find inspiration here as well.

Coming out on the other side of diagnosis is tricky because you feel at times that your life is over. She should know that, and I think that I speak for many, there are good sunny days ahead of her and working for those days is so worth doing.

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Guest tearose

Hi and welcome Mary.

You have great information already but I wanted to say hello!

There is alot to learn and so much is still being researched in this field.

You and your daughter are dealing with many things...it is good that she has you!

best regards, tearose

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Hi sweetie, I am also the mom of a kid who's been sick forever. So I can totally empathize and sympathize. I just can't spell. :blink:

It's hard to know all that's going on, because so many things are affected by hormones. Addison's is a hormonal problem and ANS dysfunction is linked to hormones, of any kind. She may have overlapping things going on. I think we see this a lot more than it may appear, just as a lot of ans stuff overlaps.

The right things are happening now, she's being tested (and tell her we've all been told it's in our head's and a thick skin is imperative to deal with this stuff.) For her and you. It sounds like she's already got a great advocate, :) , and now it's just getting through all the stuff looking for answers. Sometimes there just won't be any, we learn to deal with that too.

There will lots of people here in your corner and you both can find lots of support and understanding. And info...just look through old threads if nothing else and you are sure to find something and say AHA!!!

Good luck and welcome, hope she comes home soon sweetie! morgan

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