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Saw this one posted on a CFS site. Am I being overly sensitive or does this irritate you too? A lot of the information is really good and then they go and blow it. I feel like e-mailing the authors. Thoughts?

http://journals.lww.com/jaapa/Fulltext/2013/05000/A_46_year_old_woman_with_postural_orthostatic.6.aspx

"TEACHING POINTS

- Postural orthostatic tachycardia syndrome typically affects women between the ages of 20 and 40 years who are experiencing anxiety or underlying stress."

"A psychogenic feature has also been suggested for the condition. Researchers at the Mayo Clinic attempting to differentiate a psychological etiology as opposed to a physiologic etiology for deconditioning POTS conducted a study involving 14 POTS patients. In order to replicate the physiologic symptoms of POTS, lower‐body negative pressure (LBNP) was applied to participants in one group to cause peripheral pooling of blood in the legs and decrease central blood volume. The other group of patients was administered a placebo‐type LBNP and exposed to mental stressors. Patients stimulated with LBNP developed tachycardia whereas those who received placebo LBNP and mental stressors did not.7 Although this study helps to substantiate deconditioning POTS as a physiologic process, exaggerated somatic hypervigilance was confirmed with psychological testing in these patients,7 thereby reinforcing a commonly seen symptom in the literature."

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This is completely outrageous. When I was diagnosed with POTS (which I do not have any more-it progressed to orthostatic hypotension and I have AAG), they said I had "conversion disorder".

Later on, like about 6 months later, it turned out I had severe gastroparesis and orthostatic hypotension, that was "diabetes-related". Four and a half years later, it turns out I have a rare autoimmune disease that caused all of this.

Psychosomatic diagnoses are more of an "I don't know" diagnosis for doctors.

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Guest Alex

No offense to the authors, but I have a couple of questions/comments for them:

* How many POTS patients do they see/treat/interact with on a daily basis?

*What are the 4 patophysiologic mechanisms of POTS - they mentioned neuropathic, hyperadrenergic, hypovolemic and ...what's #4? Is it the deconditioning they mention several sections below?

*What's with "the first step in treatment is to increase water and salt intake for volume expansion and to begin regular exercise" before even describing hypovolemic POTS?

*Is the sodium excretion of less than 100mEq/24h an accurate enough criteria to diagnose hypovolemia? I thought it's circumstantial at best...

*The clinical criterion they listed is incomplete/incorrect - to the best of my knowledge - those symptoms (the HR increase) have to manifest themselves for at least 6 months for the POTS dx to be made, the HR increase is simply from supine to standing, not measured after walking for 30 min. (see www.ncbi.nlm.gov/pmc/articles/PMC1501099 for correct dx criteria for POTS according to Dr. Raj).

*The article goes from Patophysiology to Treatment to Teaching Points to Treatment again?! I'll let this one go as it's not too big of a deal...

* A study conducted on 14 patients is at best inconclusive in my opinion... But then again other drs published their Grinch theory based on a study conducted on 19 patients of which 9 dropped out.

* This is the first time I ever read about a salt intake of 10-20 g a day and 0.4 mg florinef a day. I thought the max amount of florinef rx-ed in POTS is 0.2 mg a day, while 0.4 is recommended in rare instances for adrenal issues.

* Are they aware of the fact that research points towards abdominal binders as being more effective than compression hose?

*I'd agree with a psychosomatic dx only AFTER all other causes have been eliminated through thorough testing, but that is clearly not the case here.

And I could go on but then I'd be nitpicking ....

Unfortunately there are others out there reading the article that don't know as much as we do and might take the info as correct ...which apparently it is not the case.

If you want to email the authors Naomi, please feel free to include what I've outlined above. Also, I'd be more than happy to help you put together a list of valid POTS articles that they might want to read to give them a better understanding of the patophysiology, treatment options and so on.

Alex

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Hi Naomi,

No, you are not being overly sensitive. Irritated is probably the mildest word I would us to describe my feelings. Having been the recipient of comments like "your problems must be related to anxiety or stress". It makes my blood boil and my hair stand on end when psyc issues are brought to the forefront in places where they don't belong. The authors really seem to have a negative bias in general and as Alex pointed out they do not even present accurate and current information. Thank you for following up on this.

Janet

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I encourage you to write and present the questions.

Advocacy and awareness.

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Psychology of Pain, Hypervigilance and Attention to Pain

GEERT CROMBEZ1, STEFAAN VAN DAMME1, CHRISTOPHER ECCLESTON2 1Department of Experimental Clinical and Health Psychology, Ghent University,

Ghent, Belgium 2Pain Management Unit, University of Bath, Bath, UK geert.crombez@ugent.be, stefaan.vandamme@ugent.be, c.eccleston@bath.ac.uk

Synonyms

Heightened vigilance; overallertness; heightened attention

Definition

Hypervigilance to pain or somatic sensations is the excessive tendency to attend to pain/somatic sensations, or the excessive readiness to select pain-related information over other information from the environment. In the context of pain, hypervigilance is assumed to be initiated and maintained by its immediate threat value. Pain-related fear and catastrophic thinking have often been found to be strong predictors of hypervigilance to pain.

This sort of thing has been on the diagnostic table for many years, I think it is about time we start to put our views across now, I for one am getting quite cross with being told that we are hyper vigilant that is rubbish. My children showed signs of ANS dysfunction from birth how can this be all to do with them being hyper vigilant.

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Anxiety and depression - mental health conditions are sadly quite common in the general population and are estimated to affect around 25% of people. If you look more specifically at people who attend for physiotherapy it is thought that around 50-60% of people attending for treatment will also have a mental health condition. Anxiety and depression affect the way we think, feel and behave. They also have a variety of effects on the body. The overall result is that people with mental health conditions often experience more pain and a deterioration in their mental health can coincide with an increase in their pain. Several of the issues we've mentioned already are common with anxiety and depression; hypervigilance, fear, stress and low mood, loss of control, pain focus and catastrophising – so it's easy to see how mental health can influence pain.

Fortunately the brain can also turn pain intensity down by flooding the nervous system with very strong forms of pain relief that are reportedly many times more powerful than medications. It has a number of systems dedicated to this including something called 'descending inhibition' which works within the brain and spinal cord to stop some nerve impulses reaching the brain.

There are ways in which you can engage these systems that help to turn pain down.

The above is from a physiotherapy chronic pain management tool kit!

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0035068

A very good read.

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Hopefully anyone seeing a dr who views dysautonomia as psychological would stop seeing this

doctor. Thankfully there's enough info on the internet for patients to see what a croc this is.

I'm still amazed at how articles with this many errors gets published. You'd think I'd have realized

by now that getting an article published doesn't mean the authors knew what they were talking about.

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I've been treated for anxiety disorder, conversion disorder, psychosomatic illness, and all of that treatment did absolutely nothing for me. I would get to the point were they'd say "what's triggering your anxiety" and I'd have absolutely no answer because my symptoms are not provoked by a psychological trigger. That's actually one of the reasons why my doctors started looking into other things such as POTS. If that isn't proof enough I don't know what is. Not to mention my brother has POTS as well and he has no history of mental illness or deconditioning, he was a cross country runner until recently when he started getting more sick. I just don't know why the deconditioning issue is still being discussed, it seems to be the vast minority of cases and over-represented in literature like this.

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The thing I don't understand is it appears this patient was handled appropriately. No mention of underlying psychological problems, the right tests were done and significant abnormalities were found, but they still feel the need to mention anxiety and stress in the article. What really bothers me is that this was written by women. Some of my worst experiences while trying to get diagnosed was with female Doctors. Several years into my symptoms I switched to an all female practice. The Dr. tried at first to figure it out, but after a while when tests kept coming back negative she told me I might want to see a psychologist. She had also sent me to an endocrinologist and I only recently learned (while collecting records for my SSDI claim) that the endocrinologist wrote a letter to the PCP stating that she felt my primary problem was "mood."

It was while seeing this group of female doctors that I had my first heart, adrenaline and breathing episodes. I went to see them, they did an EKG, and told me I was fine. The episodes persisted so I went to ER. The ER doctor (without my knowledge) called the PCP who informed him not to test me for anything because she felt my problem was psychological, not physical. I did not realize the extent of this until I recently when I read my ER hospital records. How dare she? She is not a licensed psychologist qualified to make that assessment and had no right to direct that the ER Doctor. In fact I had already seen a psychologist who gave me a clean bill of mental health and recommended a neurologist.

Needless to say those Doctors got a letter and brochure (you understand if you've been following our Dr. education campaign). I found contact info for one of the authors of the article above and will send out an information packet. I also have an e-mail for one if anyone is interested in sending a polite, informative e-mail. Please PM me if interested.

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So sad. :-(

One of the most relieving moments was when an ANS specialist took me seriously and reassured me that POTS is a REAL condition. I've had dysautonomia since birth, long before I could have developed any psychological anxiety, and yet for about 25 years was just told that I'm too intense and have anxiety. Having the POTS label has made my family and friends take me more seriously.

Articles like this are really damaging. And notice they say that the alternative to a psychological disorder is just "deconditioning?" How many of us have been athletes? I know of lots of people who got POTS after a major event like a marathon or a swim meet.

Anyway, I'm not saying that people with psychological disorders are immoral or bad or not to be taken seriously. These are very real and very difficult things to deal with. It's only that mislabeling someone with POTS and treating us with counseling is never going to work, and that's years of guilt and suffering when we think we're failing at the counseling.

I think the best thing is for us to put on a good face in public as much as possible, come across as sincere, reasonable, professional people, and hopefully this will help us to be taken seriously.

I'm also a little discouraged about trying to convince certain doctors otherwise. Other people might have a different opinion on this, but I'm tired of trying to convince doctors who don't believe me.

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Yes I have a heightened sense of my symptoms. Passing out and knocking your head against the concrete will sometimes make you analyze how you feel. I pretty sure I know which came first and I won't apologize or concede to any Dr for my worry. They either get me or they're gone. Makes getting treatment easy. Hehehe.

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Here's a good quote I found from a book called "Electrophysiologic Testing." This is one doctor who gets it.

"Patients suffering from dysautonomia often find the pathway to diagnosis to be an ordeal. Many patients ... are written off as being merely anxious or hysterical."

"After patients with one of these conditions have seen a doctor or two, and have had a couple of major workups which have yielded no objective findings, and after their doctors have expressed frustration with these results and have begun broaching (overtly or by hints) the idea of a psychogenic illness, or malingering, or some other such condition in which their psychological inadequacy is offered as the root cause, they actually do often become depressed and anxious-- even if they began their quest with well-adjusted self-control and a sense of abiding optimism."

"Likely the referring doctor will believe, and the patient will be afraid, that they are just crazy. So the electrophysiologist will be doing a very good thing [by detecting the dysautonomia]."

-Richard Fogoros, "Electrophysiologic Testing," http://books.google.com/books?id=YpXbMjZMSRcC&pg=PA288&lpg=PA288&dq=malingering+dysautonomia&source=bl&ots=PK3HG2WvZe&sig=jrRom-snLz4dU2t0b5jSoDGXir0&hl=en&sa=X&ei=-3ejUaeWHKjSywGUjIHQCw&ved=0CGoQ6AEwCQ#v=onepage&q=malingering%20dysautonomia&f=false

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Carrie - I like what you posted by Dr. Fogoros. And it's true because I do feel somewhat traumatized by the whole experience - but I am trying to channel my resentment into positive action. One of the co-authors here is a Professor who teaches physicians assistants. That's not good. You must be sensitive to this since you are also an educator. I understand the frustration, but I do think as a patient community we can affect change... or at least try.

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http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox

I know I've posted this on here before, but it is a great (in my opinion) article from a former Neuropsychologist, turned quite unwillingly Potsie. Worth the read. I know I can certainly relate to those of us who have had the suggestion that 'it is all in our head". I even had one dr. suggest that I had "situational anxiety" and to seek out professional help through a psychologist. I'm not even going to get started on the term "deconditioned".

Does anyone realize that when the ANS system is out of whack, we shall most certainly experience anxiety? I know lots on here like to see publishings, but I just don't have the energy or the brain capacity at this time to look them up, sorry. It is our ANS that controls our anxiety, ie: fight or flight response. It is not at all fun to live in this state most of the time. It is not "all in our heads", it is not a case of which came first, the chicken or the egg. It is quite simply that having POTS can, in many instances, cause us to have anxiety, not the other way around. Again, sorry that I don't have the literature to back this up.

And, quite frankly, who wouldn't have anxiety when they can find nary a dr. that knows enough about the ANS and can fully equip us with the knowledge we need to correct it so that we can lead normal lives???? UUGGHHH!!!

Simply signed,

Disenchanted, Discouraged, Disheartened and possibly (in their, the above authors of original article) Delusional

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The first thing the doctors told my son when we took him to Case Western University Hospital in Cleveland, was this is not all in your head. It is a physical issue, not a mental one. Those doctors (Chelimsky's) also do research on it, so at least there are doctors out there that get it.

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Guest Alex

Here is yet another recent POTS article. I believe it was posted before, but it makes a valid point, so I'm reposting it.

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

Postural Tachycardia Syndrome (POTS) Diagnosis and Treatment: Basics and New Developments Satish R. Raj, Benjamin D. Levine

Patients with POTS can often seem anxious in clinic. However, a misinterpretation of physical symptoms such as tachycardia and tremulousness might account for some of this apparent anxiety. When formally assessed, POTS patients did not have a higher incidence of major depressive disorder, anxiety disorders, or substance abuse than the general population. Using the Anxiety Sensitivity Index, there was a trend toward less anxiety in POTS patients than the general population, and the elevations in POTS correspond to blood pooling in the lower extremities, and not to anticipatory anxiety.

and another one:

http://jap.physiology.org/content/102/3/896.short

Excessive heart rate response to orthostatic stress in postural tachycardia syndrome is not caused by anxiety

the HR response to orthostatic stress in POTS patients is not caused by anxiety but that it is a physiological response that maintains arterial pressure during venous pooling.

many POTS patients report being told by at least one physician that the cause of their tachycardia is psychogenic

Utilizing several experimental approaches, our findings indicate that anxiety is not the primary cause for the excessive orthostatic tachycardia seen in POTS. In a larger context, our findings suggest that although psychological symptoms are common in POTS, they may not be causal.

This study shows that HR in POTS patients only increased markedly during periods of significant venous pooling and that the HR responses to “sham” orthostatic stress and mental stress were similar between the patients and controls. Additionally, the HR responses to both orthostatic stress and mental stress were not related to scores on several psychological indexes associated with POTS. Taken together, these findings suggest that anxiety is not the primary cause for the excessive orthostatic tachycardia seen in POTS.

Thus we found little evidence that anxiety is the primary cause for the excessive orthostatic tachycardia seen in POTS.

In summary, HR in POTS patients increased markedly during significant venous pooling, whereas the patients had normal HR responses to sham orthostatic stress and mental stress. Additionally, the HR responses to both orthostatic stress and mental stress were not related to scores on several psychological indexes associated with POTS. Thus anxiety is not the primary cause for the excessive orthostatic tachycardia seen in POTS.

I’d write to the authors of the text, but I’m afraid my message won’t be on the nice side, given the amount of inconsistencies I found in their article.

As a former researcher, I find it interesting how their list of references is only 7 titles long, but what worries me is that one of the authors is an associate professor at a Physicians’ Assistants Program. So much for properly educating future medical professionals about a controversial and frustrating condition.

Alex

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In the past, I was misdiagnosed with Anxiety & Depression, the meds I was taking for years, made me worse and lived like a zombie!

NO MORE ANTIDEPRESSANTS FOR ME UNTIL I DIE (PROMISS).

Where did they come up with that age range?????and with no exceptions???? ( 20 and 40 years ), I got this when I was only 5 years old and here I am after 5 decades, getting worse.

I am an evidence, I can prove them wrong!

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Relax, thanks for the giggle regarding analyzing :)

This is a great post and replies and an area I very much hope to advocate with. (when I can get the brain fog managed)

I use to joke about it being "battered patient syndrome", and have to say without a doubt the two years of being undiagnosed and sent to different specialist while my body was falling apart, was absolutely one of the most challenging to endure for self, family and friends.

I wish there were better ways to nip this in the bud, so to say. That the medical profession seems so quick to toss it to mental illness, or state such, when it is not their speciality and ends up on patient record.

If the patient is indeed needing mental health, then that should be supported and treated for that issue alone, and not as a catch all, or substitute for treating the autonomic nervous system.

(this is where compartmentalized medicine may not serve patients to the best)

Deconditioning, ugh.. that one got me too, (previous had been quite strong, and athletic. What helped was that the Neurologist stated that this is seen in athletes and apparently is more common)

Alex, your comment about channeling resentment into positive. This is good and something am on board with. Would very much like to advocate as part of patient community. (although a bit challenged with brain fog)

Will send you a message.

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Here is yet another recent POTS article. I believe it was posted before, but it makes a valid point, so I'm reposting it.

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

Postural Tachycardia Syndrome (POTS) Diagnosis and Treatment: Basics and New Developments Satish R. Raj, Benjamin D. Levine

Patients with POTS can often seem anxious in clinic. However, a misinterpretation of physical symptoms such as tachycardia and tremulousness might account for some of this apparent anxiety. When formally assessed, POTS patients did not have a higher incidence of major depressive disorder, anxiety disorders, or substance abuse than the general population. Using the Anxiety Sensitivity Index, there was a trend toward less anxiety in POTS patients than the general population, and the elevations in POTS correspond to blood pooling in the lower extremities, and not to anticipatory anxiety.

and another one:

http://jap.physiology.org/content/102/3/896.short

Excessive heart rate response to orthostatic stress in postural tachycardia syndrome is not caused by anxiety

the HR response to orthostatic stress in POTS patients is not caused by anxiety but that it is a physiological response that maintains arterial pressure during venous pooling.

many POTS patients report being told by at least one physician that the cause of their tachycardia is psychogenic

Utilizing several experimental approaches, our findings indicate that anxiety is not the primary cause for the excessive orthostatic tachycardia seen in POTS. In a larger context, our findings suggest that although psychological symptoms are common in POTS, they may not be causal.

This study shows that HR in POTS patients only increased markedly during periods of significant venous pooling and that the HR responses to “sham” orthostatic stress and mental stress were similar between the patients and controls. Additionally, the HR responses to both orthostatic stress and mental stress were not related to scores on several psychological indexes associated with POTS. Taken together, these findings suggest that anxiety is not the primary cause for the excessive orthostatic tachycardia seen in POTS.

Thus we found little evidence that anxiety is the primary cause for the excessive orthostatic tachycardia seen in POTS.

In summary, HR in POTS patients increased markedly during significant venous pooling, whereas the patients had normal HR responses to sham orthostatic stress and mental stress. Additionally, the HR responses to both orthostatic stress and mental stress were not related to scores on several psychological indexes associated with POTS. Thus anxiety is not the primary cause for the excessive orthostatic tachycardia seen in POTS.

I’d write to the authors of the text, but I’m afraid my message won’t be on the nice side, given the amount of inconsistencies I found in their article.

As a former researcher, I find it interesting how their list of references is only 7 titles long, but what worries me is that one of the authors is an associate professor at a Physicians’ Assistants Program. So much for properly educating future medical professionals about a controversial and frustrating condition.

Alex

Is Dr Levine an expert in POTS?

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I deleted my POTS about Mayo because Ive spoken to a few people associated with them and I was being unfair. There are some there that 'theorise' that psychosomatic factors play a role in POTS but not that its behind the illness as they are big on the autoimmune small fiber neuropathy theory.

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