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sky
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I have been a lurker on this forum for months but have not posted until now. I was dx with pure autonomic failure at Vanderbilt last Jan. I have noticed that so many of you are young women who desperately want to finish your school, have careers and children I have done that. I had a career practicing law for almost 30 years. I have been blessed with four children, all adults now and very supportive. I. therefore, do not feel that I have the right to complain. I was also a big international traveler.. This great life came to an end in December 2005 when I had to gve up my practice. I hoped, although I knew better, that Vanderbilt could do something to improve my abiility to function. Vanderbilt did help by giving me a dx and various coping mechanisms. I am having a difficult time adjusting to this inactive life. I would like to post to share and also to aks questions. All of you seem so much more knowedgeable than I am about this strange disorder. I will stop now and just let this be my introduction.

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hi sky -

welcome B) i'm sorry that you have reason to be here but glad that you found us. it's a great group of people and a great resource of info. i also have autonomic failure (after initial diagnoses of NCS/POTS/OI) & also went to vanderbilt in the midst of my dysautonomia journey. i'm a bit of an anomoly age-wise for autonomic failure (i'm 26) but have some other issues as well (i.e. probable mitochondrial disease) so that likely plays into things for me as well. that's the abridged version B)

there aren't many on the board with the same diagnosis but lots of issues throughout many of the dysautonomias overlap so that doesn't have to be a barrier.

and...just because you've had a great life thus far (and it certainly sounds like you have) doesn't make the current changes & adjustment any less tough. it's good to realize the good but only human (& healthy) to be bummed that your body has dictated limits that you wouldn't have chosen otherwise.

it's great to hear that you have a supportive family. it doesn't fix everything but it certainly helps.

we'll look forward to getting to know you more...

:D melissa

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Thanks for the welcome I did not know that PAF was just a dx for older people. Is it? I did know that I was too old for POTS. I have fewer symtoms that most who post. But my major symptom is extreme lightheadness upon standing. I can only stay upright for 3 to 4 minutes. However, I recover upon sitting. Is that your experience with PAF?

Sandra

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Guest dionna

welcome to the forum. feel free to ask away and i know atleast someone on the forum will know exactly what you are going through and will either give you advice or point you in the right direction to answer your question. i'm one of the youngsters (20) that hasn't done much yet so you brought a smile to my face when you said you were able to do so many things especially the children. i love kids but i'm afraid of being pregnant when the time comes but that's a good bit in the future so i shouldn't worry yet. i'm really happy that you were blessed.

dionna B)

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welcome to the forum. feel free to ask away and i know atleast someone on the forum will know exactly what you are going through and will either give you advice or point you in the right direction to answer your question. i'm one of the youngsters (20) that hasn't done much yet so you brought a smile to my face when you said you were able to do so many things especially the children. i love kids but i'm afraid of being pregnant when the time comes but that's a good bit in the future so i shouldn't worry yet. i'm really happy that you were blessed.

dionna B)

I did all of those things before I had any dysautonomia symptoms. I first had symptoms two years ago but did not get diagnosed until a year later and them not a full dx until last Jan. I continued to travel and work until Jan of this year. I led a risky lifestyle insofar as I could have fainted and seriously injured myself. I am now afraid of doing much of anything. It surprises me that many of you are able to do things that I can not but I have fewer symptoms than most of you that are more active. Perhaps age had something to do with it.

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Hi Sky,

We must have just missed eachother at Vandy, I was there in January too, but there were no autonomic patients on the floor when I was there B) I'm sorry you've been diagnosed with PAF, but it's good to know your symptoms aren't too wacky. My worst symptom is lightheadedness as well.

We've got a good supportive group here, so hopefully you'll find comfort and answers with us :D

- Lauren

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Hello Sky and Welcome-

I am still new here and learning myself. Things really turned upside down for me a year ago after going on a flight to Nashville of all places!! We were going away on vacation and I suffered some ear trauma on flight and was on a lot of medication for this. Long story, had CFIDS and NCS before going, but nothing like the problems I have now. I find it ironic and very frustrating that the leading research hospital is in Nashville!!! If I had only known, I would have figured out a way to see someone there. It would have been interesting to see what would have happened, if instead of going to the outpt. clinic in Nashville that I was referred to by the hotel, that I had gone to the Vanderbilt hosp. With my history, I wonder if anyone would have picked up on anything there!! Well, I have no desire to go back after the flight experience and the 18 hour drive home, as we couldn't fly. So I am hoping to learn here through the experience of others and working with my physicians.

One of the physicians thought I may have MSA, one specialist says no-but something is clearly not right and symptoms still persist. He thought I was too young for MSA. So I continue on the journey to sort out treatment for the symptoms and official diagnosis.

Truly ironic.

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hi sky welcome!! you will find great support here.. feel free to ask questions and vent your concerns.. we all do it..(i know i do!! :) )..

But knowledge is power.. and power in dealing with this illness is knowledge...I'm so sorry that you have PAF.. But on the other hand its good that you got a diagnosis and didnt go for a very long time with out one...

take care dear and again welcome!

dizzygirl

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Hi

Welcome aboard,

You will find many answers in the following links:

http://dinet.ipbhost.com/index.php?showtopic=1954

Take care

I am overwhelmed with the welcome I have received. Thank you all. I do not know why I have waited so long to post. I should have known from reviewing this forum that I would be welcomed warmly as others have been. Lauren, I was at Vanderbilt for about 10 days leaving around Jan. 21. I was told by Dr. B. at that time that PAF was not a common dx but there was no indication that my condition was progessive. I think that the fear of anyone with that dx is that it will progess to a Shy Dragger condition. I think that I am stable and unlike so many of you I am consistent. I do not have good days or bad but good and bad parts of days. I can associate these changes during the day with food. The less I eat, the better I can manage the symptoms. On days that I need to go out, I just do not eat for hours. Do any of you manage your symptoms this way?

Sandra

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Sandra-

I am still learning about the food relationship, but I do notice a connection. I am at least thankful that you know what to expect daily -not the ups and downs, but it is still a major adjustment in your life.

I find I get a lot of what seems like abdominal bloating and pooling, at times, drives me crazy. Sometimes I haven't had anything to eat-so not sure, sometimes happens after sitting, so try to move as much as I can.

Nadine

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Sandra-

I am still learning about the food relationship, but I do notice a connection. I am at least thankful that you know what to expect daily -not the ups and downs, but it is still a major adjustment in your life.

I find I get a lot of what seems like abdominal bloating and pooling, at times, drives me crazy. Sometimes I haven't had anything to eat-so not sure, sometimes happens after sitting, so try to move as much as I can.

Nadine

Nadine:

I do not know if I would have figured out the relationship with food if it had not been for my Vanderbilt experience. I learned that carbohydrates were particulary problemetic. Blood pools in the stomach to help with digestion, thus leaving the head and causing symptoms. I also learned that cafeine helped in this regard.

Although, Vanderbilt did not give the magic pill that I had hoped would materialze, it did help in numerous ways. Sorry you had such a negative airplane experience. Otherwise, going to Vanderbilt, even if no magic pill, is helpfull If it can not give a definitive dx, no place can

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Thanks for the welcome I did not know that PAF was just a dx for older people. Is it? I did know that I was too old for POTS. I have fewer symtoms that most who post. But my major symptom is extreme lightheadness upon standing. I can only stay upright for 3 to 4 minutes. However, I recover upon sitting. Is that your experience with PAF?

Sandra

hi sandra -

just to clarify, there is no such thing as being "too old" for POTS. while it's true that it tends to have a younger age of onset that's not an absolute. and there are definitely many people your age and older who have it (including at least a handful on the forum). PAF is most commonly diagnosed in those "middle age" but i suppose everything has its exceptions.

and actually our experiences actually sound pretty different :) i started out with NCS (with intermittant symptoms), then POTS (varied symptoms but never "well"), now autonomic failure. mine isn't technically dubbed "pure" autonomic failure b/c of the possible connection with mitochondrial disease for me but that's a matter of semantics i suppose. for me it has been and is expected to be a progressive neuropathy and it now effects a good number of my body systems. the BP/HR problems aka inability to be upright is the most disabling; while i can only stand for a few minutes (similar to you) my sitting upright is limited as well to several hours at once...on a good day. i no longer sweat anywhere other than my trunk and the neuropathy has impacted the functioning of my bladder (i have to self-cath) and my GI tract (i'm on IV nutrition & hydration). i have sleep apnea as well but that may or not be directly related. and that's the short version. so...i'm a bit of an anomoly that lots of docs are currently pretty intrigued with.

i'm glad to hear that you've been pretty stable & that they don't expect things to progress for you.

hang in there,

:lol: melissa

p.s. many of us do a decent amount of lurking before joining and/or posting :)

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Guest Julia59

Welcome Sky!---you will have a lot of support and understanding from this site.

I've been helped by some really nice people during some pretty hard times.

I'm 47 years old now, and did not get diagnosed with POTS until June of 2001. I knew I had it at a younger age, but it was mild until I crashed in Dec. of 2005.

Julie :0)

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Hi Sky, Melissa (Sunfish) is correct-- PAF can happen to anyone of any age. I have a friend who was diagnosed at Vandy, then confirmed by NIH with PAF while she was an undergraduate--about 19 or 20 years old at the time.

I'm glad you've felt welcomed. While I'm admittedly biased, I think we've got a pretty nice group of people who have a great deal of information, and and even bigger communal heart.

Nina

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Nadine:

I do not know if I would have figured out the relationship with food if it had not been for my Vanderbilt experience. I learned that carbohydrates were particulary problemetic.

I really noticed a difference when I went on the LOW CARB diet with my hubby (to support him, he lost 50 lbs). I felt so GREAT. I think maybe I'll try it again. Any thing that helps improve my energy level! :rolleyes:

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