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A FORM OF DYSAUTONOMIA ON NIGHTLINE


KathyP
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Hi All;

I am sitting here watching Nightline, Thursday, Dec. 8th. They are doing a report on Post Traumatic Stress Disorder. They said it has been around for years and that it was once called "Soldier's Heart". They are talking about the fact of more and more women in the military are coming down with it. The symptoms are the same as any autonomic dysfunction ranging from depression, anxiety, chest pain, etc.

I wasn't really impressed with it other than the fact that they shined a very little light on the subject. There wasn't any talk about how to treat it other that anti depressants.

The only thing I am hopeful for, about the piece, is the more exposure of any form of dysautonomia the better the chance is to find better treatment for all.

Just thought I would share.

KathyP :)

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okay...i have to chime in here.

PTSD is NOT a form of dysautonomia. they are two very different things.

that said, someone with dysautonomia COULD be misdiagnosed as having PTSD. i just don't want folks thinking that - when diagnosed correctly - they are in the same category. there may be some symptom overlap but there are far more differences. amongst other things PTSD requires a precipatory traumatic event (i.e. war, assault, accident, etc.); it's a very specific DSM diagnosis.

soldier's heart is terminology that was used for physical symptoms years ago in soldiers who could not physically stand up (literally & figuratively) to the physical stressors of battle and is often presented in autonomic texts, lectures, etc. as one of the first names for a dysautonomia (possibly OI, NCS) that was not at the time understood as such.

i didn't see the show so can't speak to how things were or weren't presented but just wanted to clarify from a definition standpoint.

i'm all for awareness and dysautonomia and PTSD can both have a major impact on people's lives (and are both often understood) but they are also very different.

:) melissa

Edited by Sunfish
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Yes, PTSD has nothing to do with dysautonomia. It is a psychological disorder brought on by extreme trauma. I was raped several years ago, and was diagnosed with PTSD in the following months. It was treated with therapy, and eventually I came to terms with it.

Honestly, it infuriates me that they would correlate the two illnesses. How can they be so ingorant? That's like linking colon cancer with manic depression!

- Lauren

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PTSD might effect autonomic function in some people but it certainly is not the same as OI, POTS, NCS etc.

I didn't see the report but if it was implying that the two are one in the same that is just incorrect and I agree with Melissa and Lauren.

This where it's very crucial to have physicians properly diagnose the underlying problem. There are different effective treatments for PTSD vs. OI, POTS, NCS etc.

AND, the symptoms of PTSD are VERY different from OI and other related disorders!!!!!

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Kathy, it looks like the show got "soldier's heart" confused, and probably confused most of the public who watched the show. The others here are correct--it has to do with the inability to stand for long periods. What further confuses the issue is that after the Gulf War, some military advocates appropriated the term and equated it to PTSD...

The term started out as an OI/POTS/NCS term, but appears, through public vernacular to mean PTSD. So, Kathy was partially correct as the current use seems to be a synonym for PTSD.

Nina

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I have to agree with all of you!

I am not quite sure how long I have had POTS, but it has definately been over 8 years, however was only diagnosed last year.

I had a terrible experience only a couple of years ago that was dx as PTSD, as I was working in a small, family run funeral home, which mainly dealt with elder persons who died of natural or near natural causes. Once I was asked to pick a body up from the John Tong Centre on my own (a patholohy lab), and the body was that of an 11 yo girl - I was absolutely horrified that not only could a young child die, but also if you have ever seen a post morum exam, it is very 'thorough'. Although the funeral home I worked for did a lot of funerals for still born children, I had nothing to do with the preperation and funerals for these wee young ones, apart from preparing their coffins and name plates.

This 11 yo girl was my first child, and as I had a sister of the same age, I was in shock, "young children that age aren't supposed to die" etc, I kept telling myself.

However, unfortunately, it is part and parcel with the job, and you are expected to get over it and go on, howver I couldn't, I fell into a deep depression and was constantly lightheaded and dizzy - I don't know where the PTSD and POTS symptoms overlaped, but I am sure they did.

I tried to go back to the job, as I wanted to help people through their grief, and try to give the best and most appropriate service possible. However everytime I went to work and saw a white coffin, I had severe anxiety, and eventually could not continue there.

It's a hard job, and I know that it takes it toll on those who work in the industry.

I may seem strange, but I am trying to demonstate that PTSD and POTS could overlap in certain circumstances.

That was a fairly long time ago as things go and have recently started doing 'transfers' again, part time - where I assist the funeral director in moving the body from the place of death to the funeral home.

It's a hard job, and I don't do it often, I'm lucky to get one transfer a week, but I feel I am doing some good and assisting those in their time of need.

It is stressful and maybe if someone had POTS and didn't realise it, an episode like I had maybe could bring it one. Although PTSD is totally a psychological disease, whereas, POTS is organic, I am sure that in certain circumstances and in certain people the symptoms could overlap, and would be hard to distinguish from each other.

Unless you are faced with a situation like that, you don't know how your body will react. My father used to be a funeral director (has since given it away), and I have seen many people react to different situations very differently.

It goes to show that we are all different, and different stressors may have different effects. But, I digress again.

From having POTS, I believe that an unusual situation can bring on POTS symptoms. In my opinion, someone who may have a 'soldier's heart' could indeed be suffering from a form of POTS or Dysautonmia, and the stressors involved may have brought on the symptoms.

Of course I am not a Doctor. I am speaking from first hand experience.

There may be a correlation that no-one has explored as yet....

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Last year I posted a story and a question in my mind about this. I think that the military has seen Dysautonomia for well over a Century and they still aren't aware what they are seeing. You guys should see this though.

http://dinet.ipbhost.com/index.php?showtop...=soldiers+heart

and if you want to watch the nightline story it's under transcripts

http://abcnews.go.com/Nightline/

Edited by briarrose
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Hi All;

Wow, I didn't mean for this to strike a sensitive cord with anyone. I was just sharing what I watched on Nightline.

Personally, I do feel that PTSD is a form of dysautonomia. Dysautonomia is a dysfunction or defect of the Autonomic Nervous System. Whether you have POTS, NCS, IST, Irritable Bowel Syndrome or even Polycyctic Ovarian Syndrome you have a form of dysautonomia because it affects the ANS.

It has been stated here constantly that the majority of people here do not know how or why they got dysautonomia. Is it congenital? Is it hereditary? Is it contracted from a virus? Is it caused by undo stress? No one seems to have these answers. So I don't understand how some of you here can say that you know for a fact that PTSD is not connected to dysautonomia when researchers don't even know. A century ago they used to call it the vapors and just brushed it off as women over reacting or being very sensitive. Today women are under so much more stress and dysautonomia is becoming more prevalent.

My dysautonomia stems from my MVPS (which was originally called "soldier's heart") and IST. I can't stand for long periods of time. I didn't have any of this until I was in my 30s. So whether I was born with it or if some extreme stress in my life time wore down my ANS it is all connected to dysautonomia. Dysautonomia is a sydrome that connects all aspects of a malfunction in the ANS. I was told this by cardiologists as well as several other doctors.

And one final comment on the subject: If woman in the military with PTSD open the doors for researchers to find treatment for their symptoms, which are very similar to mine, I say go for it.

KathyP

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I don't think you brought up a senitive topic at all--just one that is up for quite a lot of discussion.

As for the eitiology of dysautonomia, some of us do know it's genetic... those with FD and EDS have it in their families, and folks like Ernie definitely have a variant in her family. However, there are many for whom it's believed to be post-viral, and many others for whom it's a post-chemical/environmental exposure. So, some causes are relatively well understood, and some are completely too early in the research process to say yet.

Perhaps PTSD is a form of dysautonomia...and perhaps not... only time and research will answer that one, eh?

nina

Edited by MightyMouse
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Guest Julia59

Maybe PTSD could trigger an already existing ANS condition. I know as a child I would get spells of tachycardia---tremors ect. and I can not relate it to anything-----there was no rhyme or reason to it.

I did not have full blown POTS or ANS dysfunction----just these spells and they weren't that often.

I know I had ANS issues when I think back----but nothing like what I see a lot of other young girls go through now.

As I got older----stress increased----married twice-----stressful job---and later some heavy personal stress--chemical exposure---THEN FULL BLOWN POTS. PTSD could be a trigger---but that is about it in my opinion. Someone with ANS dysfunction is simply not able to process stress the same way as someone without it as the sympathetic & parasympathetic are part of the ANS---and also play a role on how stress is managed.

WE all know that with ANS dysfunction those to subdivisions don't function correctly.

I have recently had some pretty heavy personal stress followed by all the other stress that comes along with dysautonomia----and then the loss of two very important people in my life in the midst of all this.

GUESS WHAT-----the cycle of hyper adrengic attacks is starting again and i'm still in the aftermath of the previous attacks from 2000/2001.

Anyone can have ANS dysfunction secondary to stress----but I think it would be temporary unless the individual already has ANS dysfunction------then the trigger comes into play and could possibly cause a full blown case of dysautonomia----or at least a a pretty big set back or crash.

I don't really know how much sense i'm making here as i'm in the middle of a pretty bad hyperadrengic attack right now.

Julie :0)

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Guest Finrussak

Hi

I think the problem is one of wording. For example at science education training sessions I have had a LOT of trouble explaining the use of the word "observation", even among educated teachers. In common English it means to look at/see and can be very broad. However as pertains to an experiment it specifically means the changes (or not) that happens per the protocol. It also refers to the actual documentation be it in list or chart etc form.and occurs AFTER the experiment is in progress. Unfortunately it is also confusingly used PRIOR to the experiment, while "looking" at things coming up with a question and then a hypothesis.

Same here as to who is using the designation dysautonomia...whether its a description or a medical definition:

With the PTSD stuff, as per medical dictionaries and even the governments own site this is characterized as a PSYCH disorder:http://www.ncptsd.va.gov/facts/general/fs_what_is_ptsd.html

QUOTE:

[A National Center for PTSD Fact Sheet

Posttraumatic Stress Disorder, or PTSD, is a psychiatric disorder that can occur following the experience or witnessing of life-threatening events such as military combat, natural disasters, terrorist incidents, serious accidents, or violent personal assaults like rape. People who suffer from PTSD often relive the experience through nightmares and flashbacks, have difficulty sleeping, and feel detached or estranged, and these symptoms can be severe enough and last long enough to significantly impair the person's daily life.

PTSD is marked by clear biological changes as well as psychological symptoms. PTSD is complicated by the fact that it frequently occurs in conjunction with related disorders such as depression, substance abuse, problems of memory and cognition, and other problems of physical and mental health. The disorder is also associated with impairment of the person's ability to function in social or family life, including occupational instability, marital problems and divorces, family discord, and difficulties in parenting. ]

while there ARE "biological changes" they not always pertain to the autonomic system.

Symptoms may overlap; either PTSD or dysautonomia ( defined as a description of sx all of which having in common a lack of proper functioning of the autonomic system) may precipitate each other etc. Because you CAN have a PTSD without necessarily having a dysautonomia it, {in my opinion) cant be medically called the same or even a form of dysauto. Plus while the DSM ( diagnostic guidelines) calls PTSD a "psych disease" entity, the term dysautonomia isnt really recognized as a separate single "disease" but a whole class/list of abnormal functions ( like POTS, OI etc). Thats not to say I dont think one cant affect the other,or that you cant have both, just that the two terms arent interchangeable.

Like those of us with EDS/jt hypermobility...it prob predisposed us to the dysauto but there are many without EDS and severly dysautonomic etc so to say that EDS and dysauto are the same would be as inaccurate as saying PTSD and dysauto are the same.

a

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The way I see it the two are seperate but do have overlaps in symptoms.

PTSD is caused by trauma and although it may provoke changes in the body, for the most part, the body is physically responding as it is designed to do. In other words, the symptoms brought on by PTSD is the body's normal, expected response to the trauma or triggering event.

On the other hand, in POTS, OI, NCS etc the body is responding inappropriately to the messages the body sends and gets.

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I don't know a ton about PTSD. Although dysautonomia literally means autonomic dysfunction of any kind, to most of us "dysautonomia" means the conditions listed on the DINET main page: POTS, NCS, Shy Drager, MSA and PAF.

There are many other conditions that somehow involve a dysfunction of the autonomic nervous system, but I don't consider them to be in the same family as the above conditions. I can see how PTSD would fall into this category, but I just don't think it's a primary autnomic disorder like POTS, NCS etc. Accidents and trauma cause can POTS, so I could also see how someone with POTS could be misdiagnosed with PTSD due to an overlap in symptoms. There are a lot of conditions that have symptoms similar to POTS (such as Addison's), but are not dysautonomia. So, a large overlap in symptoms doesn't necessarily mean that the conditions are related.

So many of us struggle to get diagnosed and for people to believe that we have a real physical illness. I agree with many of the others that it's dangerous to put POTS, NCS, etc. in the same category as something that is primarily a psychological illness.

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