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HI-

I am new. I have dysautonomia. I also have adrenal insufficiency. I truly believe had my adrenal insufficiency had been diagnosed and treated "sooner" I would not have ended up with the dysautonomia.

My first adrenal crisis flared up my ANS. My hydrocortisone and florinef helps but still I stand and go from 60 bpm to 100-120 making a piece of toast. It doesnt come down either. MY blood pressure will stay around 90/60 then start dropping if I continue to stand. My legs turn bluish/purple and will get white patches.

This part of the disease is terrible. I use to be an avid exerciser and work as a RN. I have had to stop working.

Does it get better? It is better but not as far along as I thought it would be. My doctor has given me xanax for when my symptoms get out of control. I salt and drink abundantly.

I was untreated with the AI for about three years. Could my ANS turn around?

Thank you.....I really have found a lot of info on this board.

Katejude

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Welcome Katejude,

I would like to say welcome to the site. This is a great place for info and friendship.

Have you tried pressure stockings/hose, I won't hardly live without mine. There is a great site on the What helps page.

As to better, I guess what you concider better is a matter of opinion. Better as in return to "normal" or just being able to do daily activities. It varies widely as to where everyone is.

Again, welcome and I hope you get help and find what you need here.

Blackwolf

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Have you seen a cardiologist? You may want to talk to one about possibly taking a beta blocker. This has helped to ease my rapid heartbeats (although I don't have an adrenaline problem). You may want to get your current doctor to recommend someone, so that your treatment is coordinated. Trying to get all the different drs. to coordinate is the worst thing about POTS. Good luck!

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Hi and welcome! So sorry you have been through so much. If you are like most of us, it is going to take your body awhile to heal, but most likely you are going to improve greatly--especially if you can get the underlying problem of adrenal insufficiency under control.

Are you on other meds besides occasional xanax? Low dose beta blockers help many cases of POTS as does a low dose SSRI--but each person is unique and you may have to go through a trial and error period with medications. Are you seeing a physician who specialises in dysautonomia?

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Welcome to the forum! We're always glad to have another member on board, because this is such a great place to find support from others who can relate to what you are going through. I've gotten so much better since I found DINET. Hope to see you often!!

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Hi Katejude,

Welcome! Well the good new is, there seem to be several stories posted in this discussion group that talk about significant improvements over time. Sometimes there are relapses and sometimes not. I'm in the beginning stages and hoping for improvement as well. There's definitely hope. This board is great for support, but I don't let myself dwell on everyone's individual symptoms, or what they can and can't do. If I do get too caught up in it, I find myself thinking, oh I better not do this or that as it might aggrevate my symptoms, or I start thinking about a new symptom that I read about and it seems to magically manifest itself in my condition! :( In other words I don't want to create limitations that weren't there before I read about them! :P The suggestions of support hose, low dose beta blockers and SSRIs are all good ones to discuss with your doc. Keep us posted and best wishes!

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sorry to hear you have been diagnosed with dysautonomia but you will find lots of support here with the group. Many of us have improved over time but this is such an individual condition that what works for one, doesn't for another.

btw if I stand up first thing in the morning without having first taken in 20 t0 24 ounces of salted water, I would have the same problem you describe.

welcome to the group

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Hi Welcome to the board. On a positive note...your ANS could turn around with time. So many do see an improvement with symptoms. I have. It takes time. Lot's of good advice above. maybe you need something else added to your meds. A beta blocker was a good suggestion. If you try one, make sure the Dr orders a very low dose. It took four beta-blockers before I found one that worked for me.

Dawn a

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hello katejude!

i just wanted to say welcome too!!!

i am glad that you found us...

there is a huge range of levels of functioning and improvement on this board, and we are each so different...which keeps it always interesting around here!

the best part is that every one is amazingly supportive and generous, and full of good tips and information.

if you have specific topics you want to search, you might find stuff under "search" and put in a keyword...to see what others have said in the past...it might help answer the many questions i am sure you have! or, just post and folks will help out!

hope you start to feel better soon.

emily

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