Defeated

[Sea otter]

I just feel so defeated. Have you ever shared your POTS symptoms to doctor (you finally found dr that knows something about POTS and hoped he will try to help you) and he thought some of symptoms are "in your head"? I think doctors are psychoanalyzing patients too much and blaming everything on them, especially if they are "sensitive" nature. No wonder why so many people suffer in silence and rather say they are fine (are hiding symptoms from doctors and families).

[Pistol]

@Sea otter Sadly many of us here have been in your shoes. IMO some docs dont "believe" in POTS - or other dysautonomias - because it challenges all science they were taught. My first diagnosis was NCS - and even after passing out during my firstt TTT the cardiologists were very dismissive. " Its called the common faint" is what I was told. Drink more. Despite me having tons of witnessed ( at work in a hospital ) syncopal episodes and even seizures I was sometimes told that I am "making it up to get attention". Even after some of these were caught on halter monitors and my HR and BP were taken right away, often both sky-high. When they caught an event on EEG and telemetry while hospitalized in an Epilepsy monitoring Unit and it showed seizure from decreased cerebral perfusion due to vaso-constriction still some docs said that they do not believe in POTS. 

I was eventually diagnosed by an autonomic Specialist who even did blood work to check Norepinephrine levels and proved the diagnosis of HPOTS. Still - there are sceptics. So what I learned is - fire the ones that do not know what they are talking about, and the ones that don't know how to help - and keep the ones that understand your symptoms and are willing to take on the frustrating ordeal of finding the right treatment. 

Just because it is called an invisible illness does not mean it is not real. 

[MikeO]

53 minutes ago, Pistol said:

Drink more

Haha only if i had a dime for everytime i have been told this. passing out all over the place even when trying to get to comply with the drink more water recommendation and then be told to drink more water after i report the episodes. guess who got fired!

[Sea otter]

@Pistol Thanks for your response. Doctor who believed me and suspected POTS was great, because of him my diagnosis was confirmed. But he said that he doesn't want to interfere about treatments and sent me to another doctor. And that doctor was not interested much in helping me. I have visited and contacted a lot of doctors. I don't know where elso to go in my country, noone from doctors is not interested much in POTS or they sadly think the "cure" is to drink plenty of water, eat more salt and exercise. I have tried some POTS tratments that didn't unfortunately worked. I will do some additional tests on my own and see if something else come up. When I got diagnosis I was so happy, I thought ok it's finally over, but then new problems arose, it's neverending story. 

[MomtoGiuliana]

So sorry.  Unfortunately POTS does cause so many symptoms.  I agree that even drs well versed in POTS don't seem to be aware of all the possible symptoms.  Importantly you need a dr willing to try other treatments besides extra fluids and salt and exercise.  I've had doctors order soo many tests, and nothing came up positive for me (fortunately!), other than a tilt table test.  I did have low B12 a few years ago that I think contributed to a bad flare up. 

I hope you can get better care.

[MaineDoug]

@Sea otter,

So very sorry. But oh so predictable. 
 

By definition ALL patients (people seeking medical care), need to be diagnosed and treated. Clinicians should assume patients are accurate unless proven otherwise. 
Ergo, if the patient states that there is a problem, there is a problem. 
 

The doctor needs to do their job, perform an accurate differential diagnosis, always remaining open to the possibility that there may be MORE (not less) to the picture. After all, it’s difficult, expensive and sometimes painful to access care. We don’t do it for fun! 
 

I agree with firing the bad apples and keep searching until you find what you DESERVE! Respect, care, an evaluation, a diagnosis and care. 

[Sea otter]

@MaineDoug thanks for support. I feel so vulnarable at doctor's office. My brain is not what it used to be, brain fog plus all the other symptoms. I can't say a lot of times what I meant even I have written, sometimes I sustain to say what I meant when I see how dr thinks, or I say too much. What a mess. 😊 

[MaineDoug]

@Sea otter,

I’m so sorry. I know the brain fog frustration all too well. Even with written notes I have difficulty following along and getting all my questions or concerns in. I find myself adding asterisks and crisscrossing arrows.
 

And I understand the fear of saying or not saying something which causes the provider to decide to “discount” what I say, or to “attribute” a symptom to my thoughts. But just putting this in writing shows how ridiculous this situation is! We’re the patients, WE’RE PAYING THEM! They owe us, ethically, morally, and legally at the least a professional evaluation and treatment, which follows the professional and regulatory guidelines. 

And then after all of our efforts at preparation and careful communication, to dance around their unacceptable preconceptions, prejudices and outright discrimination, in the hope that they’ll just DO THEIR JOB, they find a way to make us feel disrespected and dismissed anyway. Frustrating!
 

BUT when you find the right providers it won’t FEEL LIKE THAT! That’s when you’ll know that you’re on the right track. I know that it can feel like it’s no good, you’ve already searched everywhere. But don’t give up! You’ll find effective, compassionate care in the most unexpected places! And when you do you won’t have to do the frustrating verbal dance and clinical jousting. They’ll listen, reassure, and care for you. THEN you’ll know!
 

 

[Sea otter]

@MaineDoug all that you wrote is so true. Thanks for encouragement!

[MaineDoug]

☯️We have to hang together! We’ve got your back! 💜

[Sarah Tee]

@Sea otter, I struggle with my brain too. If a doctor (or any person e.g. bank clerk, government employee) talks to me in a helpful way, I am usually okay.

But if they start saying odd or unfounded things, my brain freezes. It’s an awful feeling.

I’m sorry you haven’t had any success with treatments so far. It’s really hard to get a diagnosis but then not be able to make progress with treatment.

I live in Australia, and testing and treatment options here are limited. I know it’s not always easy for folks in the US to access the testing and treatments they need, but at least they know that they exist. I find myself daydreaming about winning the lottery and flying to the US for treatment!

[Sea otter]

@Sarah Tee yes, US health care is expensive, from what I heard. My country has (kinda) free health care, we have to pay some additonal monthly fee, it's not a lot. But a lot of times you are forced to visit doctor or do exames at your own cost or else you will wait months or years for it. 

[Sarah Tee]

@Sea otter, that sounds similar to Australia. A lot of treatment is free, or subsidised, but there can be a long wait.

I hope you can manage to get the additional tests you need.

[MaineDoug]

@Sarah Tee @Sea otter,

I had 30 years in the US health system before disability struck, and I was a Director of multiple clinical departments and organization wide strategy (14 Hospital system, 15,000 employees). In that role I studied health care systems around the World. 
An interesting thing about the US health care system is that it encompasses about every different philosophies. 
We span the continuum from:

Socialized Medicine- The Veterans Health, all hospitals owned by Feds, all employees employed by the Feds.

At the other end we have cash only, Concierge facilities and staff all private employees. 
 

Every other system is squeezed between. Coverage has been improving, with most covered under something, but gaps in care continue.
 

And with all the different insurances It’s crazy! Hospitals and docs don’t know what’s covered, when or if they’ll be paid, and how much they’ll be paid for care!

I will say that wait times seem better here. I can see my GP same day for an hour appointment, specialists usually take a month or more depending upon the specialty.