How Do You React When The Anxiety Thing Keeps Being Brought Up Even After Being Diagnosed With Dysautonomia?

[Canadiangirl73]

I touched on it in another one of my posts, but decided to make it a separate one.

So about two weeks ago, I was in to see my GP. We talked about my arrhythmias and the EPs I have seen about them. So last Summer I traveled about 7 hours to see a POTS specialist/EP who told me I had two separate issues: arrhythmias and autonomic dysfunction. He had MANY tracings of mine at his disposition and told me an EP study was warranted because they just weren't normal. In his eyes, I had too many arrhythmias, too varied and too frequent. He wanted to perform the study at a later appt to which I wasn't able to attend since I had pneumonia and my body didn't like the first trip. When I came back from that first one I was left with profound hypotension and dangerously narrow pulse pressure. Given all of this, my GP decided to call upon one of the EPs I had seen in my city. Well, he told her he didn't share the opinion of the other doc a few hours away from here, told her my arrhythmias didn't last long enough to warrant an EP study and (drumroll).... that I should go see a shrink!!!! I was speechless. I just couldn't believe that this doctor was still hung up on this anxiety bogus diagnosis. I had numerous tests that prove I have dysautonomia and all psychological tests' results ruled out anxiety. The two psychologists I saw told me I was frustrated by the lack of adequate care and knowledge from physicians. The POTS specialist also told me all POTS patients he had ever seen were told they were crazy and anxious which isn't the case. He told me most docs don't understand the condition well and the fact that we are often in sympathetic overdrive, so all these other docs default to an anxiety diagnosis.

I am soooo tired of this. Obviously, I made tons of progress since the onset of this condition (how to cope with it, understand it and most of its quirks) but this doctor hasn't made the same. How do you deal with this? I tend to not respond since I feel it is not worth it. Nothing I will say will sway their way of thinking. I guess I'm tired of trying to convince physicians about something I know, and my family and friends know, is erroneous. I find the more you talk back, the more you fuel this bogus diagnosis.

However, I also feel that this makes me less likely to go consult a physician, so I ride things out when maybe I should get checked out. I just don't want to hear one more time if I go to the ER and a nurse sees my HR sky rocket as I sit up tell me: "Why don't you take an Ativan? Maybe that would help?" UGH!

Guess this was a question with a rant! Sorry, but it had to come out.

[HopeSprings]

Maybe you can fax this to Dr. Dismissive. Something written by a POTS Doctor addressing the issue:

http://jnnp.bmj.com/content/80/3/339.abstract/reply

[bebe127]

Canadiangirl,

I posted this as a response to an earlier thread of yours, but thought it was appropriate here as well.

I'm so sorry you are having to deal with idiotic doctors. Unfortunately, I (and many others on this site) know all too well what you are going through. My second opinion EP (in the next county up) was supposedly an "expert" and I got pretty much the same treatment as you did. He concurred with the original dx of POTS however said I had a "mild case" since I didn't faint. That right there should've told me that this dr. wasn't worth my time. I then went into all the other symptoms I was having as per Dinet.org information that the original dx dr. gave me and he told me that none of them had anything to do with POTS! Then I expressed my concern about my chest pain and discomfort. He reluctantly asked me to show him where, as if he was placating me, and then told me that my chest pain and discomfort had nothing to do with my heart. He did no testing whatsoever, nor did he suggest any further testing. Pray tell, to whom shall I speak, if not a cardiac specialist about chest pain and discomfort?? After all that, I shut down and was in tears. The dr. asked my husband, who was present for the entire visit, what I was crying for !?!?! My husband expressed that I was frustrated about going to dr.s and getting no real answers and having to just deal with this on our own. The dr., like yours, then suggested I see a therapist. He had told me in an earlier visit that he thought I had developed situational anxiety.

Moral of the story: There are idiotic doctors everywhere. We will have upsetting visits, but we can keep up the search. I do believe that there are good doctors out there, we just have to keep our chins and hopes up that the one we are looking for is right around the corner.

I sure hope you get some answers soon. Know that you are not alone in any of this.

Feel better

[bebe127]

Canadiangirl,

Here is link to another article written by a former Neurophychologist and current Dysautonomia sufferrer:

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

Hope it helps

[jangle]

Go on to the next doctor. No point in trying to convince them otherwise. When they ignore scientific evidence, they're not subject to reason.

[E Soskis]

Hoo boy....I understand completely - It is so frustrating to know that you are viewed as an anxiety-ridden "histrionic" female. The one specialty psychiatrist I was sent to spent at least an hour attempting to explain how the mind fools the body into thinking it is sick, blah blah blah....what a waste of time! I have decided not to ever re-visit a health professional that attempts to dismiss me as "crazy" or full of "anxiety".

By-the-way....the nerves that regulate the cardiovascular system come from the Autonomic Nervous System - so, it is quite logical that when there is dysfunction of the autonomic nervous system, the cardiovascular system will go haywire - hence, the arrhythmias.....duh...duh...duh... Cardiac dysrhythmias are one of the classic signs of dysautonomia......

Sounds histrionic to me!....oops my bad.....

[southbel]

Hmmm, well I can, at times have an issue with being rather haughty and dismissive myself. In situations like this, I have a tendency to get rather sarcastic and passive agressive. I have been known to say "well, I thought you were up to date on the latest research. My mistake. Perhaps you can point me to a colleague that is indeed more informed on my issues?" This is almost to the word how I have responded in the past. I have seen primarily two reactions: one of equal disdain or one of a conciliatory nature.

My husband, who often accompanies me to these appointments, just starts shaking his head if the doctor tries the disdainful approach with me. It really is about delivery I think. Something us Southern women have learned since birth, I believe, is how to deliver withering insults wrapped in a polite and charming wrapper!

So, in short, I think you should simply call him on his poor skills but remember to do so without emotion. Do not give him the power of your tears!

[bebe127]

I totally agree with all of the above!!

Also, from my reading (if I understand it correctly) doesn't our ANS also control our fight or flight reaction?? So, why would it be totally outrageous to think that we experience anxiety, perhaps more than usual, if our ANS is so out of whack, especially if we do not fit the profile of having a true anxiety disorder? Yes, I do realize that there are idiot dr.s out there (I've had the non-pleasure of meeting many) and if you don't fit into their little box, or your ailments go out of their sphere of expertise, they just chalk it all up to craziness.

Keep your chin up Canadiangirl!!! There IS someone out there with answers!! Sadly, we might have to do much of the legwork to find them

Southbel, I love your response! I tend to break down in tears, but maybe at some point I'll be able to be as assertive as you and add in a "bless your heart" to boot!

Keep on keeping on!! I'm so thankful for this site.

[Mydoggielovesme2]

Southbel, I just love that response!...........I think we are all fed up with Drs not taking us seriously. So many have the " God" syndrome.I have on many occasion stayed home and suffered, when I should have been in ER or to Dr. Even my husband failed to call ambi when I had a mild TIA once. Unfortunately this can be a VERY serious mistake. So my advice is the same as others----find a better Dr!! And believe in yourself and what your body is telling you.

[sue1234]

I don't understand why some doctors pull the anxiety card. For instance, saying someone should be diagnosed with "Anxiety" is like saying someone with a bacterial infection accompanied by fever should be diagnosed as "Fever" because they didn't look to see why they had a fever. (Of course, there is a true diagnosis of FUO(fever of unknown origin) when all possible testing shows no basis). Giving them a fever-reducing medication does not get rid of the physiological/biological source causing the fever.

For me, I have low blood sugar AND POTS, both which give me an adrenaline release when activated. OF COURSE all that adrenaline is going to give me anxiety! But, giving me something to control the anxiety does not fix the low blood sugar or the POTS.

[jangle]

Bebe is correct and something I've thought of a lot myself. Anxiety is autonomically mediated and so if you have dysfunction of the autonomic nervous system it would make sense that there would be dysfunction in anxiety. With a lot of research pointing out hyperadrenergic states, vagal hypoactivity, and higher than levels of noreoinephrine - wouldn't it make sense that anxiety fits in there somewhere? Anxiety therefore can be a symptom of a physiological system gone haywire but it is not likely a psychological cause as Vanderbilt showed. (Which by the way I find kind of sad that they had to do a research study to confirm we're not crazy -how many other chronic diseases conditions get treated that way?)

[Kellysavedbygrace]

Many doctors, especially primary care docs, ER and internists are trained in medical school to recognize a red flag when a woman of childbearing age brings up multiple symptoms in multiple organ systems because it is unlikely that they could actually have all of those problems occur simultaneously. Most likely if there is a heart issue all the symptoms reported clinically should point to a cardiac issue. If it is an ortho issue all the symptoms reported by the patient should support an ortho issue. And thus multiple unexplained symptoms are a clue that anxiety may be playing a role.

However, anxiety disorder is a diagnosis of exclusion and should not be given unless the doctor has made many attempts to rule out other conditions through the identification and testing of diagnostic differentials.

All that to say, if a doctor is being lazy, not identifying and testing differential diagnoses such as dysautonomia they should quickly be fired.

[Guest Alex]

Unfortunately your story is not an uncommon one - I've read several such posts here and I was recently sent to see a shrink by one of my POTS specialists - because he cannot understand how I can be fine one day and bedridden the next.

None of my drs is willing to admit that they made mistakes when prescribing certain meds to me, meds that only made my condition worse, and at times I feel I'm banging my head against the wall for no good reason. I won't change their preconceived ideas, I won't make them see things from my perspective....and which is worst, I have nowhere else to turn for medical advice, so I'm kind of stuck between a rock and a hard place.

I've been told one too many times to either take my ativan, or up my clonazepam dose as I seem to need that, I had ER drs told me to my face that I am crazy to the point that I became immune to this kind of treatment.

Frankly, all these nasty experiences I had, made me stay as far away from drs and hospitals as I can. Just like you said, lately I ride things out and keep telling myself that 'this too shall pass' instead of seeking help or valid answers to my questions.

That being said, I completely understand your need to rant.

Just don't give up hoping, and don't give up fighting for yourself.

I hope you will find a knowledgeable and understanding dr soon.

Best,

Alex

[ramakentesh]

Go on to the next doctor. No point in trying to convince them otherwise. When they ignore scientific evidence, they're not subject to reason.

You talk a LOT of sense!

[ramakentesh]

Canadiangirl,

Here is link to another article written by a former Neurophychologist and current Dysautonomia sufferrer:

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

Hope it helps

Michelle's article is brilliant on this issue.