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briarrose

Is this where Dysautonomia evolved from?

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. . . and I (New Kid On The Block) thought of myself. Here's why:

Several months back I was working with a really great psychiatrist. I was having a tough time juggling a quite improbable clustering of really tough stuff - my health, familiy tragedies, unforseen responsibilities due to a brain injury suffered by my mom, career issues, marriage, just a really long list of real life issues smashed together in time for whatever reason.

My psychiatrist asked if I cared for a diagnosis. I shrugged my shoulders and said, "sure". He said, "you react just like a PTSD patient".

Curious, isn't it?

Take Care,

-Mark

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I diagnosed myself with PTSD before I diagnosed myself with POTS. It seems like there's some autonomic dysfunction in PTSD too. But I doubt everyone who's been traumatized in his or her life would have a positive TTT.

After several years of just thinking I was crazy, it was nice to have a neurologist tell me that I have a screwed-up nervous system. There's still such a stigma with mental illness.

Amy

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I'm pretty rusty in my thoughts & writings; it's been such a long time since I did this on a regular basis.

Mark

I hope that you don't think that I'm advocating for the military because I was just trying to bring to light the similarities and the fact that the military doctor's seemed best at recognizing the symptoms, even if they didn't realize what they were looking at or why. I'm not sure that the soldiers that were diagnosed were suffering from a psychological condition back then; I was thinking it had to do with their rigorous physical activity, long hours of standing and having to stay awake.

Over the years I've come to realize from all the articles I've read & the people that I've talked to, there is very little doubt in my mind that what ever changes in our system can be triggered by many different things physical or psychological (best stated in Chris Caulder?s article at (http://home.att.net/~potsweb/POTS.html). Metaphorically speaking, somewhere in our bodies a circuit goes haywire or breaks, leaving us with this "Dysautonomia."

Don?t get too caught up in the when or why because then you have to remember that there are very young children that have been diagnosed with this illness. Whenever I start to veer from reality I remember to go back and catch up on the Dynakid pages, http://www.dynakids.org/

Amy

I agree that the TTT isn?t going to be sufficient testing for everyone.

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Briarrose, the thought never crossed my mind. I found the historical journey fascinating. Medicine advances in quantum leaps that are frequntly associated with wars as wars manage to mangle many people in myriad ways all at once. Speaking of war, is your screen name a reference to Sleeping Beauty or the Jane Yolen fiction that weaves the horror of the Holocaust into the fabric of the classic fairy tale?

Stress is stress and from a scientific perspective, I'm not so sure that the ANS differentiates between the physical and the psychic. The ANS is primordial. If someone takes a baseball bat to your back or you see your freind's head shot off in Anwar Province, I have to wonder if the ANS digests and responds to those two experiences differently or not. Me thinks not, but that's my opinion, not tested theory. But hey, I like my opinions! What's your's?

Amy, I hear you regarding the stigma. It leads to ignorant fearmongering and that leads to bad science and incomplete medicine. Fortunately this is becoming politicized state to state under the grassroots movement called parity. Oregon passed legislation that went into effect January 1st making it illegal for underwriters to provide different levels of care based upon whether your problem is defined as psychological or not. This interests me in light of the military discussions above and dysautonomias. What is stress? Then what is PTSD? Decartes and his cartesian duality was inaccurate and that was a long time ago. He's also overrated as a philosopher.

It's time we caught up with reality. Amy, in your opinion, how do we get rid of the stigma? Change the language? Educate people? I wish I had the answer. Does anyone?

Take Care,

-Mark

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Mark

My screen name is one of my favorite Disney chars and back when I first got sick, I found humor in her name. I certainly wasn't going to name myself sleeping beauty ;) LOL

Sorry, I'm not well read enough to know about Jane Yolen. Disappointing as it is, time I've never been able to appreciate, probably due to the fact that I had six children right out of high school & worked either at home or earning a wage.

Thank you for asking what my opinion is, truly refreshing.

Stress - I'm pretty sure you're on to something and let me try to relate to what you said. A couple of years ago, I read an article about a soldier in Iraq. I believe the story went something like this, the first day he was in country he witnessed a person being machined gunned in half. After that image he started having what seemed like panic attacks. He went to his unit commander and complained that he couldn't sleep and he was having all sorts of strange physical symptoms. His superiors tried to placate him by telling him that everyone goes through the same sort of symptoms that he was experiencing. He asked to speak to someone but to no avail. He eventually got sent back to the states, he was told to have a medical evaluation but in fact it was to be disciplined and eventually sent for a court-martial.

It seemed so obvious to me that what his mind saw, caused his body to go through some sort of reaction and he was having similar symptoms to that of what Dysautonomia patients experience, but instead of receiving the proper medical & psychological care that he needed, he ended up in jail.

I think that story might be in the archives somewhere here on this website. I'm sure that it made me so angry that I posted it and tried to contact someone to try and enlighten them of this poor man's real problem.

Who ever said ignorance was bliss? I say, it?s **** on the person that suffers because of another person?s blissful ignorance!

OK, had to look, here was the title of my original story ( Military?s version of this, Staff Sgt. Georg-Andreas Pogany) http://dinet.ipbhost.com/index.php?showtopic=931&hl=iraq,

It would have been out of character for me to sit by and say nothing in this poor man?s behalf.

Sorry off on a tangent but what?s new there

Steph

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Mark,

I don't know how we ditch the stigma. I think it's gotten better, but I know that there still seems to be this belief that if something's wrong with your body, it's different than if something's wrong with your brain (which makes dysautonomia weird, since it deals with the autonomic nervous system, which seems to link the body and brain!)

With my insurance I actually have different companies that cover me, depending on whether it's my body or my brain. And the company that provides the mental health coverage is horrible. Deny, deny, deny. I think they do it because they can get away with it. Many people who are fighting mental illness don't have the ability to fight denial of claims, so they can make a lot of money that way.

Amy

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Interesting . .. the entire thread.

I've read about "soldier's heart" and the swoons of women in the early 20th century. This last image actually gives some romance to the ills I'm (we) are experiencing!

Nonetheless, I have wondered extensively what the link between dysautonomia and PTSD might be. I have both and as one flares up the other does as well. The two are absolutely related in my life, I'm unsure how, but so are a whole host of docs and scientists.

Thanks Dr Mark for entertaining this thread. I find it encouraging that a doc will enter the discssion. Not my usual experience!

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