Educating PC physicians

[akj]

Are there prepared pamphlets, that could be purchased, to give to physicians who say they have never heard of Dysautonomia?

Those words came from my husband’s primary care physician as my husband was having his annual check up and turned to ask me how I was.

I have looked through Dysautonomia International site, but I feel medical articles and videos, however excellent, will not be used.

 I was truly taken back, especial with the news sites giving so much coverage to some of the additional conditions that long haul COVID patients are experiencing.

Thank you for any suggestions.

[akj]

Well I apologize.  Found the perfect information pamphlet  right on the Dinet site under Physicians.

Thank you.

[Pistol]

@akj yes, I would have directed you there! For anyone wanting this information, here is the link Physician Brochures - Dysautonomia Information Network (DINET)

[Catbrat]

I was just thinking for October to be P.o.t.s. awareness month I haven't heard or seen anything, any where. I have run into multiple doctors who have never heard of p.o.t.s.,which is why so many people go untreated for years. There needs to be more done to get the word out. 

[Pistol]

@Catbrat have you ever heard of the book "The Dysautonomia Project"? It was written by physicians for both doctors and patients, as well as their families. It is devided in chapters that address different issues related to dysautonomia, and one page is for physicians, the opposite page is for patients. It is designed to be shared between patients and their providers. I gave one to both my PCP ( who then shared it with his other providers in the practice ) and my local cardiologist. It is an excellent source for understanding dysautonomia, as well as spreading awareness. 

You can also provide physicians with the new ICD9 code for POTS , G90.A . As of the beginning of October POTS is now a recognized and billable condition. Physicians no longer can deny its' existence or shrug our symptoms off, and they also do not have to struggle to put a name to our symptoms ( as in autonomic imbalance etc ).  

[Catbrat]

I have not heard of this book. I am ordering it. Thank you very much for your response. Knowledge is power.

[Sarah Tee]

I’m not sure whether it’s still going, but at one time doctors could ask for a free copy of The Dysautonomia Project. (Possibly patients could nominate a doctor to have a copy sent to as well?) US only.

[akj]

Thank you Pistol.  Have order the book.  Though wish publication date was not 2015, so much is happening so fast.  So also got downloadable health provider 2022 copy.  As always thank you to this wonderful community that shares so much knowledge.

[MikeO]

I know this community is pots centric and getting a ICD code for pots is huge. No longer can be denied the fact it exists. But some of us still do suffer from other Dysautonomia issues that is not a simple having a normal hr when sitting and go tacky when standing.

I have made progress with my care team as to recognizing Dysautonomia but there is no ICD codes for the rest of us outside of a chart label. Attached is the codes currently being used.

   

[Pistol]

17 hours ago, akj said:

Though wish publication date was not 2015, so much is happening so fast.

@akj the book is more geared towards guiding physicians and patients in changing the way dysautonomia needs to be addressed. We can no longer think that the doctors have an easy answer, and the doctors have to learn that they have to BELIEVE the patient, rather than getting proof for the legitimacy of the symptoms. One of the reasons that it is so difficult for many physicians to understand dysautonomia is that they were taught that if a symptoms cannot be proven by results ( and the treatments they THINK should help don't ) then it must be psychological. This is a very antiquated attitude and dysautonomia ( which was only discovered in the nineties ) requires a different approach. The doctors need to understand that symptoms that previously were unexplained now have a cause, but the cause is not black-and-white but "foggy". 

Specialists still have the mind set that there is a specific organ or process that needs to be treated ( cardiology, endocrinology, neurology etc ) and everyone concentrates on THEIR area of expertise. PCPs will refer us to a specialist but there is no ONE specialty for dysautonomia, so we get the run-around. After seeing ( and firing ) many useless and ignorant physicians I finally found my team - PCP, Cardiologist and Autonomic Specialist. What they all have in common is that they listen, put more effort into treating the symptoms than into trying to understand their reason, they all try to educate themselves about dysautonomia and - most importantly - they do not try to treat the disease but instead see the patient as a whole, body, mind and spirit. That is a necessity because dysautonomia is a multifaceted condition and affects many body systems including ( but not limited to ) our mental state. 

On the other hand we - the patients - will have to learn that we have to work WITH the physicians in order to find the right treatment. We can no longer expect that the docs have all the answers - they dont! We have to do our own research and we have to be willing to try medications and treatments that may backfire. There is no ONE treatment for us because dysautonomia has so many mechanisms and causes. What works for one will not work for others. I have hyperadrenergic POTS and although many of my symptoms are typical for POTS the commonly used meds do not work for me. I had to be brave and work with my specialist by trying them all and then stopping them when they are proving to be ineffective or even have adverse effects. But the difference is that most uninformed physicians gave up after one try because "I should have responded to their suggestion, since I didn;t it must be in my head". My specialist on the other hand knows that we all respond differently and was able to explain to me why we try each med and what may happen. This was why we could work together in my best interest. 

In the last 30 years or so dysautonomia has become much more known, and there are more docs that know of it than not. But most physicians are either afraid of treating us because they dont really understand it, or they are simply too set in their ways and want to practice only what they know. Thankfully dysautonomia is now taught in most medical schools ( so I was told by my cardiologist ) and therefore the new docs will be more educated about it. 

[akj]

Thank you Pistol for taking the time to answer so completely.  I thought the book was very very helpful.  I learned a great deal, applauded the”flip the clinic concept,” and saw myself in so many of the shared situations.  It was well worth buying and reading.  That book and Dr. Yellman’s lecture on managing Orthostatic Intolerance presented by the Bateman/ Horne institute in conjunction with U of Utah gave me hope.  I began to have symptoms in 1992 but was not diagnosed till 2009 and it is amazing the research, the articles, the lectures, etc.that now come up.  Of course as the Dysautonomia Project book says the help provided by those who share information, as in this site, is an outstanding .