Dysautonomia is all in your mind.

[Nelson G.]

Hello everyone,  I am sharing a post I made at reddit a few minutes ago.

Many of us have been told that dysautonomia resides in our mind. That our symptoms are created 'up there' in our head. Even if the tilt test came out positive.

So I was wondering if any of you have ever accepted this premise. Have you ever affirmed 'Yes. All these symptoms are in fact created in my head, because I am anxious/depressed/[fill]'?

 

____ why I ask.  unnecessary to read anecdote.

The last cardiologist I saw the other day came up with this hypothesis —after a long time not hearing it— that dysautonomia and POTS was in my mind, he even pointed his head with his index finger,  my tilt test came up positive 9 years ago, and he told me that if I actually had dysautonomia I'd be dead by now, and that dysautonomia in younger people is rather rare if not impossible (i'm 27).  
The cardiologist btw, has wrote tons of documents about syncope, pacemakers, abnormal heart rhythm, etc, I have to say I was rather shocked by his response, he took my pressure while laying down, then while standing, and 'confirmed' his hypothesis because my bp went up, then told me to 'go on with life'.
Anyway, while I was returning home I noticed that I wasn't frustrated, but rather fascinated by that hypothesis,  I've read hundreds of people that suffer a lot (me included) when their doc implies 'c'mon, you know you're making it up'.  So I questioned myself,  'what if somebody actually said 'you know what doc,  you're right! It was all in my mind''

[MikeO]

38 minutes ago, Nelson G. said:

Many of us have been told that dysautonomia resides in our mind. That our symptoms are created 'up there' in our head. Even if the tilt test came out positive.

So I was wondering if any of you have ever accepted this premise. Have you ever affirmed 'Yes. All these symptoms are in fact created in my head, because I am anxious/depressed

For me the answer is no just for the fact that there is data to the contrary. Still does not mean i don't have battles yet with my care providers.

[Jyoti]

Fundamentally, I believe we are one unit and it is mostly foolishness to try to compartmentalize our bits and pieces (body and brain, for instance) as if they could operate independently of one another.  There are loops and loops that impact each other and I have seen this multiple times. 

Once, when I was very young--19 I think--I developed vertigo overnight and the doctor I saw heard me out and then asked about my love life and work life.  I was insulted!  They were both in the dumpster, but hey...this was a real physical thing that was happening to me!   He wrote me a prescription for valium, which I promptly threw in the nearest bin in outrage. But I went home, broke up with the bf and quit my job and the next morning I could walk a straight line again.  

I wish it were that simple more of the time.  I've been in a terrible flare for three weeks now.  My heart rate AND my blood pressure have gone way high and all the tests done have revealed nothing.  My neurologist prescribed Librium yesterday saying--you are in this flare, your body is flooded with catecholamines and there is not much we can do about that, (beta blockers have been dangerous for me) so this will help you ride it out without freaking out. 

I don't know if I will toss that Rx or not, but I could see---something has provoked my ANS.  I have no idea what it is, but I am in a bad way physically.  My mind did not--absolutely did not--create the flare.  But I can see how it could make it worse.  Being assured, for instance, that my EKG and blood work were fine allowed me to stop wondering if there was some other organic problem emerging, thus permitting me to be less anxious.  But a high heart rate is alarming.  It is meant to be in a healthy human --our heart rate SHOULD go up when there is danger, right?  So we can likely--in my view--respond to the physical issues with anxiety or depression which worsens our EXPERIENCE of them, or we can stay a bit more detached from them, hopefully allowing them to run their course without further exacerbation.  

I'd also say that when I tried not long ago to use my mind on my POTS symptoms --it was an unmitigated disaster.  More of an experiment in this realm than anything else, I think I had confirmation--if I had had any doubts!--that it is physiological in ORIGIN.

It is also true that some people, especially younger ones, recover from dysautonomia without there being any clear reason why, so if you consult your body and find that you feel ok, go with it!  

[MomtoGiuliana]

I wish I could challenge the doctors who make such claims to live in my body for 5 minutes during a flare.

Yes of course the mind is part of the whole body and it's true we don't well understand this connection medically.  It's true for sure that your mental state can cause physical symptoms.

How does this doctor explain the explosion of POTS now with post COVID symptoms, I wonder.  

I do think more physicians are now aware of dysautonomia and that it is a physical illness distinct from mental illness.

There was a time I believe when diabetes was believed to be essentially a mental illness. !

[Jyoti]

13 hours ago, MikeO said:

For me the answer is no just for the fact that there is data to the contrary

Yes!  There is data to the contrary, but a lot of doctors are not very familiar with it.  Hopefully before long....like MS and peptic ulcers, the mainstream allopathic narrative will shift from psychological to physiological.

[MikeO]

2 hours ago, MomtoGiuliana said:

I wish I could challenge the doctors who make such claims to live in my body for 5 minutes during a flare.

I was just thinking the same. Sure one off my providers used the term that was not friendly (prodromal symptoms) big word but can be taken a few ways. I get so mad. My DM Trainer at least Gets me. She did note i have been asking appropriate questions and have engaged in conversation. She also gets my orthostatic hypotension and a link to (Bad Carbs) or food. She is such a mom

3 hours ago, Jyoti said:

Yes!  There is data to the contrary, but a lot of doctors are not very familiar with it.  Hopefully before long....like MS and peptic ulcers, the mainstream allopathic narrative will shift from psychological to physiological.

@Jyoti i have been so documented test wise there should be no questions. Yet i continue to have the battles with providers. Not sure what modern medicine teaches now days but i get a feeling most of this is a generalized response to the provider has no idea as to what is going on. All i can say is testing is crucial but yet i get push back on that as well.

You Rock!  

[Knellie]

@Nelson G. - While I believe that symptoms can be made worse by stress and mental health issues such as anxiety, depression, and other things, I know that dysautonomia is not caused by those things. I have had anxiety for a while, and in fact, my anxiety started after I got dysautonomia, not before. I think doctors sometimes have a tendency to say things like that because dysautonomia is a disease of the nervous system. Your nervous system controls every single system in your body, so naturally if your nervous system is messed up, then almost every other system is going to be messed up too. Doctors have a hard time seeing that the body is all connected, so sometimes they can say things like because they truly don't know what is going on. Dysautonomia is a complicated disease that is very misunderstood. I once thought that it was all in my head too, so I stopped going to doctors thinking, "If it is all in my head and I just ignore it, it will all go away." In fact it did not, but only got worse. If I could make my disease go away by going to therapy and taking anti-anxiety meds (which I have also tried, with no effect), then I would. But it doesn't seem to work that way.

[Sushi]

I agree with others that while Dysautonomia is not caused by the mind, stress can make the symptoms worse. Here is my anecdotal response to such docs: I recently had a cardiac ablation for Afib and part of the protocol involved ablating the autonomic ganglia in the heart. After this procedure, I am able to stand up for about 3 times as long before starting to faint. So...they didn't do anything to my mind, just my heart!

[TCP]

When my dysautonomia reared it’s ugly head at the same time as Small Fibre Neuropathy in 2007 I was told it was the way I was thinking caused it. I was shocked but not surprised. Doctors often say things are psychological when they don’t know what it wrong or how to treat it. Every condition I’ve ever had have often been documented as being from a psychological origin. I’m wary of doctors. The good ones do all they can for us the poor ones haven’t got the guts to say “I don’t know”, as their egos won’t let them so they imply it’s created in our minds. 

[Jyoti]

1 hour ago, Sushi said:

After this procedure, I am able to stand up for about 3 times as long before starting to faint. So...they didn't do anything to my mind, just my heart!

Great to hear this @Sushi!  I am really happy for you and imagine you must be enjoying the expanded freedom.

[Stitches]

Why would those with dysautonomia accept being told this is not a true disorder and it is all in our heads?  With any disorder stress, anxiety can exacerbate the symptoms. I have symptoms that come and go even if I am not stressed or anxious. Maybe I misunderstood your statement but I will not allow any physician to tell me that my symptoms are only in my head. 

[Jimvano]

Placebo and nocebo effects demonstrate the mind can impact the body in positive and negative ways. I believe some of my symptoms could be impacted by the mind, as others have also said. These impacts include obvious things like BP and heart rate, but also hippocampal size, cholesterol levels, and organ function. So, yes, I have accepted the premise that SOME of my symptoms COULD be caused by the mind.

I also accept the premise that diet/fluid intake/salt intake, heat, physical exertion, and mode of respiration (nose/mouth) can cause some of my symptoms. 

I think doctors who try to say our symptoms are "all in your head" are simply afraid to acknowledge their ignorance and impotence in working with health issues they don't understand. I know my symptoms are not ALL in my head so each time it happens I ask myself, do I confront this doctor's ignorance or find another doctor?

[Pistol]

22 hours ago, Jimvano said:

I know my symptoms are not ALL in my head so each time it happens I ask myself, do I confront this doctor's ignorance or find another doctor?

I think this really depends on the doctor. I have found that most docs are ignorant towards our illness, probably because it is so frustrating to find the right treatment. But I have found that you cannot argue with an ignorant doctor. However - I have found some doctors that listen and admit that they dont know how to treat my symptoms - but they help me anyway, and work with me trying to find a treatment that works. I am lucky in so far that I have an amazing specialist, a patient and caring PCP and a local cardiologist who educated himself about dysautonomia and is working together with me and the other docs, and because of these three people I am much better today. 

So my experience was to fire those who are not the right fit, and keep kissing frogs until you find the prince!

 

[Diannna]

I just had that same conversation with my surgeon a couple days ago, and because of the incident during my surgery when my body bent an intubation tube, while I was under and I had an episode, I said to him that I was happy for that confirmation that it wasn't in my mind. He had to agree with me that it  is not, it is for real.  You still have those who refuse to acknowledge because they don't know how to treat what they don't understand.  

 

 

 

[edriscoll]

It is, unfortunately, very common to have to sort through doctors to find the right fit.  As @Pistol said "kiss a few frogs.."  And I think it is true more so when you have an illness that is both complex and difficult to treat.  Many doctors are result driven.  They want to diagnose, treat and have success.  Of course, that's what we want too, the difference is that we are the ones living with the results when there is not the successful outcome we all wish for.  

I have found that it can go a long way with a doctor to let them know that you aren't expecting them to know everything.  That all we are asking for is a doctor that is willing to learn with us.  Because there is no one size fits all treatment for any form of dysautonomia.  

I weed through doctors very easily by their response to information I bring to them.  Example - before I was diagnosed, I was put on Cymbalta by my PCP to help with pain from spinal fusion surgeries.  I had a hideous reaction.  I couldn't lift my head without being so dizzy that I came close to fainting.  I was taken off the drug but my PCP was surprised by my body's reaction to the med since it wasn't listed anywhere to be a side effect or known reaction.  We ended up chalking it off to some sort of weirdness and I started listing Cymbalta under allergies on my medical forms.  Two years later when I was finally diagnosed with some form of dysautonomia, I brought info with me for my next visit with my PCP.  It was an article about SNRI's and the effect of that classification of drug on dysautonomia.  She was more than happy to revisit the topic.  She read the article, asked if she could keep and thanked me for the info.  Now, that's a keeper.

Keep firing those frogs until you find the Prince, or Princess. The good ones are out there.

[Sushi]

I just got out of the hospital yesterday after a followup procedure after my cardiac ablation last November. They placed a Watchman device in the heart to lower stroke risk and of course I was on a cardiac telemetry unit afterwards and the heart-healthy” food was no salt. Predictably my BP tanked and I educated the nurses on Dysautonomia…and they believed me and gave me a salt feast and were impressed when my BP started creeping back up. No one at that hospital ever questioned Dysautonomia or EhlersDanlos and and took they them into consideration in my treatment…except for the salt factor! Gotta say that the anesthesiologist was really great and took these diagnoses very seriously.