WE ARE NOT ALONE: POTS hits COVID patients, who get same response we do: dismissal, anti-d’s, anxiety drugs, and “…ALL IN YOUR HEAD…”

[YippeeKi YOW !!]

While everyone was exulting over long-COVID's effects on medical views of ME and predicting this would result in great things for ME/CFS patients, I maintained that underestimating the capacity of the medical community to stick to whatever story served their interests best was fruitless, and that long-COVID patients would eventually wind up in same place we were .... ignored, dismissed, dosed with useless and potentially deeply damaging anti-anxiety meds, anti-d's, and beta-blockers, and given various versions of " ..... it's all in your silly little deluded, unbalanced heads ....".

It's with absolutely no sense of satisfaction that I can safely say that that's exactly what's happened.

When will it end? What will it take to focus our deluded, unbalanced little medical professionals to hear us, and more importantly, to act on that "new" knowledge and information?

Your guess is as good as mine, but I wouldn't wait standing up.

Especially if you suffer from that "delusional" condition, POTs ....

A condition called POTS rose after covid, but patients can't find care… 02-27
https://www.yahoo.com/news/condition-called-pots-rose-covid-185615559.html

 

[linusbert]

When will it end? What will it take to focus our deluded, unbalanced little medical professionals to hear us, and more importantly, to act on that "new" knowledge and information?

some folks with pitch forks and torches in front of a premium clinic with signs "stop gaslighting and murdering people" and some ropes wound around a tree or post with hanging and burning straw puppets.
that might make an impression.

in france they burn cars for less...

people are already classified as insane. so why not.


a different way could be to make a alternative medicine community with doctors and stuff who vow to practice real medicine and not pharma sponsored charlatan-ery. also with better schooling of new md's.
but this must come from the medical community, we as patients have no influence here.


also somebody could develop a doctor review portal in the darknet calling out such doctors and clinics.
problem is, this doesnt work without darknet and automatically will become illegal.
i used regular review portals and everytime i said something not positive about a clinic which was 100% true and i could even sometimes proof its true.. they still did censor and delete my review because they do not want to engage in a lawsuit with said clinic because they threaten and do this.

 

[YippeeKi YOW !!]

people are already classified as insane. so why not.

Probably because the next step would be to lock everyone participating up in a psych ward for "observation", and getting out of one of those apparently takes a lot of family pressure and jumping thru hoops. Ad it stays on your medical record for, like, flucking ever, which will guarantee a perpetual " ... head case ...." diagnosis, even if you're dying from heart failure ....

And on the practical side, what better way to give them ammunition for their " ..... it's all in their heads ...." arguments.

Personally, I prfer to let the enemy fight their own battles with no extraneous help from me ....

 

[YippeeKi YOW !!]

@Jyoti , @Husband of .....

 

[linusbert]

Probably because the next step would be to lock everyone participating up in a psych ward for "observation", and getting out of one of those apparently takes a lot of family pressure and jumping thru hoops. Ad it stays on your medical record for, like, flucking ever, which will guarantee a perpetual " ... head case ...." diagnosis, even if you're dying from heart failure ....

i am not saying that this should be violent or against the law!
thats no reason to lock people in a clinic. a peaceful protest where nobody engages in violence , harm of others or selfharm is not punishable.

 

[Jyoti]

ignored, dismissed, dosed with useless and potentially deeply damaging anti-anxiety meds, anti-d's, and beta-blockers, and given various versions of " ..... it's all in your silly little deluded, unbalanced heads ....".

As it happens....even though I am diagnosed with POTS and have a specialist (who was unavailable to me in crisis), this last week has ushered in some new and disturbing dysautonomic symptoms and I ended up at my PCP's where I was told: we don't really know what to do for you and then offered Lexipro (because if we can control your [non-existent] anxiety the symptoms will abate) and beta blockers.

Some days it feels pretty hopeless. They are really out of their depth.

 

[YippeeKi YOW !!]

Some days it feels pretty hopeless. They are really out of their depth.

Dont try to tell them that. They place the depth markers and can change them at will. We're just the lab rats ....

I ended up at my PCP's where I was told: we don't really know what to do for you and then offered Lexipro (because if we can control your [non-existent] anxiety the symptoms will abate) and beta blockers.

Their belief that anti-d's will solve whatever ails 'ya, along with a handful of anti-anxiety drugs and assorted beta blockers. Wait, add some gabapentin, and BINGO!!! you're good to go.

NEXT PLEASE..... (Dr motions towards door) ....

They've been getting away with this for years, and I don't see a new day a-comin'. It depresses me profoundly ...

 

[linusbert]

They've been getting away with this for years, and I don't see a new day a-comin'. It depresses me profoundly ...

pitchforks and torches, anybody?

we don't really know what to do for you

this is actually a step forward. they acknowledge they do not know.
i think its much worse when they pretend to know exactly whats the problem, and that is the patient is stupid and psycho... and just needs to take his medicine and calm down.

this doesnt help me much further if the doc doesnt know... but if he is this polite and doesnt add another problem ontop, that is a psycho diagnosis you have to fight away, this is actually not to bad.
i also had a doc, he told me he doesnt know how to help, he made a few reasonable suggestions, took his time to listen and his ideas were actually not bad. didnt help. but he did the best with the knowledge he had at that time.

if the doctors are reasonable, they just need to come together, acknowledge there is a "new" sickness problem and form circles to do research and offer treatment.

 

[Jyoti]

@linusbert —I TOTALLY agree that an honest acknowledgment is a breath of fresh air compared to telling us we are nuts.

I expressed my gratitude for that to the provider—it is a way of reinforcing it. And I meant it.
But then—psych meds and beta blockers were her answer.

I think most of them can’t bear yo find their tool bags empty. I understand, but it doesn’t change how destructive that impulsive reach for the same old tawdry list of remedies is.

 

[Hip]

POTS patients are not being told "it's all in your head". There is no orchestrated campaign to cast POTS as either a psychosomatic or somatoform condition, as there was with ME/CFS.

POTS can be misdiagnosed as anxiety, because symptoms are similar. It does not help that many POTS patients also suffer from comorbid anxiety symptoms along with their POTS. So that probably throws doctors off. But the doctor is correct in saying patients have anxiety, if anxiety is one of their symptoms.

 

[linusbert]

POTS patients are not being told "it's all in your head". There is no orchestrated campaign to cast POTS as either a psychosomatic or somatoform condition, as there was with ME/CFS.

i disagree a bit.
because i observed with friends and family, that many get psycho treatment for 100% somatic diseases like broken foot, pneomonia etc. they get dismissed like many of us did. just a quick visual inspection and then the hint to seak psychiatric treatment. they didnt even do the necessary diagnostics to be safe.

medicine is failing right now 100%. its not only cfs and pots. doctors and clinics become useless and a danger to humanity. not because they dont know it better but because of the ideological and ignorant decline and also hubris and dellusions of grandeur.
they belief they can detect and treat patiens just by looking at them for 5 secs. they have required diagnostics to run on certain situations to not oversee the common bad things. and they do it anyways.

 

[Jyoti]

POTS patients are not being told "it's all in your head". There is no orchestrated campaign to cast POTS as either a psychosomatic or somatoform condition, as there was with ME/CFS.

While you might be right about the orchestrated campaign it still isn't such a great thing to try to navigate. I have definitely found that I get a slightly better reception when I tell a doctor I have POTS than when I mention ME/CFS.

On the other hand, it took me six years to convince any one of many doctors of many stripes to even consider POTS, or to do the requisite testing. I was told over and over and over again that I was anxious (I was not), that I needed to exercise more (I did not) and that there was nothing wrong with me that a little meditation wouldn't cure.

What I am struck by here is the absolute lack of curiosity we encounter. POTS or ME/CFS or MCAS or..... Lyme too. When I was finally put on a tilt table, my heart rate went up to 154 and my BP dropped to 43/32 in ten minutes. Once that happened, I had 'em. They cared, they believed me, they recognized disfunction. But it took six years and umpteen approaches to convince anyone I needed that test.

To me, the article linked sounds about right....

 

[linusbert]

my heart rate went up to 154 and my BP dropped to 43/32 in ten minutes.

waaaaat?? that sounds scarry. could you improve on that?

can this test be done on a regular electric bed?

 

[Hip]

because i observed with friends and family, that many get psycho treatment for 100% somatic diseases like broken foot, pneomonia etc. they get dismissed like many of us did.

I've never come across reports like this from my friends and family. I suspect that a psychiatric diagnosis is more likely to be given in patients who present with psychiatric symptoms along with their physical symptoms. If the doctor suspects you have mental health issues to begin with, that may colour his perspective.

Unfortunately with medically unexplained symptoms (MUS) — which include ME/CFS, fibromyalgia, irritable bowel syndrome, irritable bladder syndrome, interstitial cystitis — they often come along with psychiatric comorbidities like anxiety, depression, derealisation, depersonalisation, OCD, etc.

I think these comorbidities are one reason why doctors may (erroneously) think even the physical symptoms reported by such patients could just be a result of the patient's abnormal mental state, especially if the patient comes out with crazy ideas.

I've come out with some crazy ideas myself in front of my doctor. Before developing ME/CFS, I was suffering from substantial anxiety for some years, and also had a generally perturbed mental state, which affected my perspective and judgement, and my poor doctor had to listen to my crazy ideas.

At one stage I had this theory that my symptoms might be due to carbon monoxide poisoning. There was scant reason for me to think this, but that's what I told him. He took me seriously, but it was just a crazy idea of mine. Obviously, once you start coming out with these red herrings, a doctor is less likely to take your subsequent statements seriously.

 

[YippeeKi YOW !!]

POTS patients are not being told "it's all in your head".

With all due respect, this presupposes that you've been present at EVERY SINGLE medical appt for every single patient on at least two continents, and know exactly what was said, the tone in which it was said, and the prescriptions that resulted .....

There is no orchestrated campaign to cast POTS as either a psychosomatic or somatoform condition,

Again, you're citing facts not in evidence, unless you were at every single medical appointment for every single POTs patient with every single Dr they saw, and know the intimate details of those appts and their results....

POTS can be misdiagnosed as anxiety, because symptoms are similar.

Symptoms that can be interpreted as similar to 'anxiety' are present in every illness from heart failure to cancer ....

I always felt that one of the functions of Drs was to separate what " ....seems to be .... " .... from "what actually is ... " ....

It does not help that many POTS patients also suffer from comorbid anxiety symptoms along with their POTS

And now we're back to " ..... it's somehow all your fault ...." altho youre right .... lugging around ME for years and getting progressively worse can definitely produce anxiety. And depression. But treating those SYMPTOMS as tho they were the actual disease is at best simplistic and dangerous, and at worse, reckless.

But the doctor is correct in saying patients have anxiety, if anxiety is one of their symptoms.

That's absolutely true, once the Dr has tested out and eliminated other possibilities, see above ....

And what if anxiety ISN'T one of their symptoms, but the expression of a series of symptoms that mimics anxiety, like erratic heart rhythms, racing pulse, insomnia as a result of the foregoing, tremors brought on by increased heart rate and lack of sleep, or even the result of a mysterious illness that's gone undiagnosed and untreated for years, leaving the patient with a deep sense of helplessness and despair. Treating those wont do anything but partially mask the actual illness until, in the most extreme cases, it's too late to make any real difference, no matter the treatment ....

 

[linusbert]

I've never come across reports like this from my friends and family. I suspect that a psychiatric diagnosis is more likely to be given in patients who present with psychiatric symptoms along with their physical symptoms. If the doctor suspects you have mental health issues to begin with, that may colour his perspective.

yeah they were all suspicious... they were all humans.

what part of: a car drove over her foot and she has pain since... is psycho? how come no x-ray have been made until half a year later?

how to go from pneumonia to IBS?

no sorry, i do not support this. these docs are lazy. this happend all in one of germanys top clinic. but i know same stories from other docs as well.

At one stage I had this theory that my symptoms might be due to carbon monoxide poisoning. There was scant reason for me to think this, but that's what I told him. He took me seriously, but it was just a crazy idea of mine. Obviously, once you start coming out with these red herrings, a doctor is less likely to take your subsequent statements seriously.

a patient can be a whacko (not saying you are) and at the same time seriously sick. there is no perfect patient.

do you know the criteria for psycho disease? according to their guidelines?
denying having one.
so when doctor suggest your symptoms could be all in your head...
you have the choice of going along with it and admitting to your psychiatric (nonexistent) disease
or you deny it.. and confirm his diagnose.
sorry, this is not science, this is a witch trial!

 

[Hip]

With all due respect, this presupposes that you've been present at EVERY SINGLE medical appt for every single patient on at least two continents, and know exactly what was said, the tone in which it was said, and the prescriptions that resulted

The article just says that some POTS patients are being misdiagnosed with anxiety. So the doctor believes (erroneously) that the patient's physical symptoms are due to anxiety. Which is not an unreasonable hypothesis, given that anxiety can produce physical symptoms such as tachycardia, sweating, etc.

But misdiagnosing POTS as anxiety not the same thing as a doctor telling you that your POTS is all in your mind. The doctor has not said to the patient: "You have POTS, and this is a psychosomatic condition".

Whereas with ME/CFS, from about the late 1980s onwards, as Simon Wessely and Co moved into ME/CFS research, doctors were actually taught that ME/CFS was a somatisation disorder, and Wessely went around the world promoting his view that ME/CFS was simply a condition maintained by the patient's own belief system.

Wessely is on record as saying:

"I will argue that ME is simply a belief, the belief that one has an illness called ME"

"Beliefs are consequently probable illness-maintaining factors and targets for therapeutic intervention".

"The clinical problem we address is the assessment and management of the patient with a belief that he/she has an illness such as CFS, CFIDS or ME..."

Source: here

Not only that, but in the late 1980s and 90s, disability insurance companies were working in cahoots with psychiatrists like Wessely in order to recast ME/CFS as an "all in the mind" condition, so that these insurance companies could avoid having to pay out very expensive long-term disability support to ME/CFS patients. There was thus a massive global orchestrated effort to repaint ME/CFS as "all in the mind".

There are no such orchestrated efforts to paint POTS in this way.

You mean that ME patients are now being treated effectively for ME and not being fobbed off with anti d's, anti-anxiety meds, beta-blockers, and gabapentin, along with recommendations to increase their exercise?

Exercise is well-known to improve POTS. It can be curative in some cases. Advising POTS patients to exercise is a good suggestion (provided they don't also have ME/CFS).

Beta blockers are a known treatment for POTS. So are SSRIs.

 

[Hip]

no sorry, i do not support this. these docs are lazy. this happend all in one of germanys top clinic. but i know same stories from other docs as well.

I read some years ago an article saying that doctors in Germany are quite dismissive, impatient and grumpy with patients who present with complicated issues. I don't know if this is still the case, but maybe your experience might not occur in other countries?

Both France and Germany seem to have less recognition for diseases like ME/CFS. You may be misdiagnosed with depression if you are an ME/CFS patient.

In France, they still try to analyse autism in Freudian terms, they do not view autism as a biological condition, which is ridiculous.

 

[linusbert]

I read some years ago an article

i can tell you from personal experience, this article is a lie! if they were just dismissive impatient or grumpy it would be much better than it is.
9/10 are outright incompetent. they cannot diagnose the most simple disease.
i dont know anybody who actually got the right treatment or diagnose. i know some guidelines and even those they just ignore.
basically you walk into the doctors office to pick up some weird psycho diagnose. and they really are persistent, they really try to find something they can spin to make it a psycho issue.

 

[YippeeKi YOW !!]

i can tell you from personal experience, this article is a lie! if they were just dismissive impatient or grumpy it would be much better than it is.
9/10 are outright incompetent. they cannot diagnose the most simple disease.

I cant speak about German Drs, but it feels a lot like you're describing a fairly good-sized slice of the American medical system as well ...

About a decade ago, give or take, I read an article, which was I think also broadcast on NPR, that outlined a questionnaire that some research endeavor had sent out to Drs nationwide, asking among other things if any of them had every cheated while in medical school.

They were astounded when fully 70% admitted that they'd cheated , either to get into medical school, or to stay in, or to graduate, or all three. 70% !!!!

It explains lot. That, plus the takeover of almost all medical schools by various BigPharm companies, who, thru the power of their capacious purses, 'suggest' what courses should be offered, their contents, the syllabuses for the courses, what research will be done at a given university, who gets the really good lecture circuits, who gets to speak at the numerous 'conferences', all held in various exotic and desirable locations and offering ginormous speakers fees to those lucky chosen, who gets to go there with all expenses paid, in short, who prospers in the pursuit of medical ... uhh ....excellence, and who doesn't.

Add to that the fact that hospitals have been quietly buying up doctor's practices for several years now, so you may think you're going to an independent private practitioner, but in actuality he's owned by the hospital where he has privileges, and it's the hospital, for the most part, that dictates the protocols and care his patients receive, up to and including surgeries ....

So being responsive to the hospital's interests and hierarchy seems to be more important in forging a successful medical career than actually diagnosing and treating patients.

And it shows ....