Week Two to the Dinet Discussion

[MikeO]

Hi,

This was a very informative lecture. it is obvious that Dr Svetlana Blitshteyn looked ahead to this session. She did answer a number of questions that has been on my mind. It is starting to be more clear that POTS is just that going tacky when standing. The dysautonomia portion seems to have many contributing factors and symptoms. While i am not vested as to the cause of the POTS I am sure there is external factors that will trigger it.   

[edriscoll]

I'm glad you felt the presentation was informative.  As to your observation that POTS is more than just becoming tachy when standing - that point has been reinforced now by both presentations.  Going back to Dr. Suleman's research that showed that people with POTS live with an average of 32 symptoms each day.  There is much more to this disorder than "just" being tachy.  It is why this is a complex syndrome that is very difficult to diagnose for the uninformed physician.  Not to minimize the tragic results of COVID in any way, but the long-haulers syndrome will hopefully bring more attention, more funding for much needed research and better informed medical communities that will help dysautonomia patients overall.

Thank you for your comment and participation in the sessions.  Next week will be the session from Dr. Raj one of the leading POTS researchers to speak specifically about management and latest research.  Hope you will find that informative as well. Take care. 

[MTRJ75]

4 hours ago, edriscoll said:

Going back to Dr. Suleman's research that showed that people with POTS live with an average of 32 symptoms each day

I heard this yesterday. Not shocking, but really validating and also goes back to my question in the other thread about informing our doctors without overwhelming them. You walk into any doctor's office (or ER) with 32 symptoms and they're assuming it must be anxiety. 

[Pistol]

When I first saw my autonomic specialist back in 2012 ( then the first physician I met that knew about what was going on with me without getting that blank stare ) he showed me a list of about 20 symptoms and asked me to tell him which ones I experience on a daily basis. After reviewing them I said:" All of them" ! His response was: " That's what they all say."

It is obvious that most non-specialized docs cannot grasp the effect an unstable ANS has on the ENTIRE body, mind and spirit. Dr Suleman pointed this out very well in his presentation. However - ER docs, specialists and others mostly are interested only in ONE particular set of symptoms, one that they can treat. So by telling them the myriad of problems and difficulties we encounter on a daily basis surely overwhelms them and frustrates them from the beginning. I personally believe that this is why many docs prefer NOT to educate themselves on POTS ( or just stick to the watered down version of orthostatic tachycardia, beta blocker and Florinef ) because they feel it is not in their specialty to treat it. Hence we get stuck with docs who shrug their shoulders and refer us to someone else. 

I am grateful to Dr Suleman and Dr Blithshyn for the excellent and very well prepared presentations, we are so lucky to have them in the POTS community! I am looking forward to the remaining 2 parts of this webinar. 

[edriscoll]

@MTRJ75  That is an excellent question.  We plan to include your question in our roundtable discussion with medical professionals coming up on November 2nd.  As Pistol wrote, it does make sense that it would be overwhelming for many primary care doctors.  During our session with Dr. Raj he talks about the treatment of the various symptoms that come with POTS and other forms of dysautonomia.  That session will premiere next Tuesday, October 26th   I think you'll find that very interesting as well.  Thanks again for your question and participation.

[MikeO]

5 hours ago, Pistol said:

t is obvious that most non-specialized docs cannot grasp the effect an unstable ANS has on the ENTIRE body, mind and spirit. Dr Suleman pointed this out very well in his presentation. However - ER docs, specialists and others mostly are interested only in ONE particular set of symptoms, one that they can treat. So by telling them the myriad of problems and difficulties we encounter on a daily basis surely overwhelms them and frustrates them from the beginning. I personally believe that this is why many docs prefer NOT to educate themselves on POTS ( or just stick to the watered down version of orthostatic tachycardia, beta blocker and Florinef ) because they feel it is not in their specialty to treat it. Hence we get stuck with docs who shrug their shoulders and refer us to someone else. 

This has to be the worst part of my journey in trying to find help. I have been tossed around to numerous Doctors and at best one would just attempt to treat one or two symptoms and then just give up. I do feel blessed that i drew the girl that i did at UWM Madison she went the extra mile for sure. we did go over symptoms and i just unloaded all of them (there are many) she took them seriously. She also went into my chart and looked at all the data i have accumulated over the years (no other doc has ever done that) and concluded the finding of nOH.

What really has helped is she agreed that i have some components that fall under dysautonomia and even spoke with my GP and Cardiologist. Since then i have made some progress.

[Pistol]

@MikeO - this is what happens when you finally meet a health care professional who does their job the way it is supposed to be done: by listening to the PATIENT and not pick out words or symptoms they say. When you find someone who does that then they are worth sticking with. My PCP knew LESS than me about DYS when I first got sick, but he had witnessed enough of my symptoms to know that everything was real. This saved me - I has SOMEONE on my side I could fall back on when the specialists washed their hands of me. 

[edriscoll]

@MikeO and Pistol  I agree and the other side to this discussion is that my PCP treats me but also refers me when there is a symptom that just doesn't seem quite right.  An example is when my shortness of breath was getting worse.  I was blaming it on dysautonomia and the expected dyspnea with exertion.  She noticed that my lung function was deteriorating, which is unusual with dysautonomia.  She sent me to a specialist and I was diagnosed with Pulmonary Arterial Hypotension.  The symptoms are very closely related to dysautonomia in many ways.  If she had attributed my symptoms to dysautonomia only, I would not have received the life saving treatment that I needed.  My point is that a good physician needs to regularly assess your symptoms and be attentive enough to send you elsewhere when a different specialist is needed.  They also need to be able to put their own ego aside enough to recognize that they can't always be the only answer for us.  Without that, serious medical issues can be overlooked - gastric issues, heart issues, etc.  Sometimes being referred can be just as important as a doctor who treats all our symptoms. 

[MikeO]

@edriscollyou are absolutely correct there are two sides to this discussion and not everything can be blamed on dysautonomia. What i react to is as @Pistolmentioned is when the healthcare professionals do not listen or react to what they should be. Like you i have had a serious issue that came up in 2017. I had a stress test that was high risk and my PCP did not take it seriously and would not refer me to a cardiologist I have seen these dismissals numerous times with other PCP. Might be because i would complain about so many issues it just overwhelms them. Instead She wanted to put me on an antidepressant.

So i did the next best thing and called in to get my test results (that was so i could talk to a RN) The nurse took it seriously and had the oncall DR do the referral. I ended up needing a CABG 4 bypass..

I will almost guarantee most of the PCP in the health system that i am stuck in are totally clueless about dysautonomia or even POTS so even having this conversation would not have gone anywhere. And to be honest i did not know what dysautonomia was until the beginning of this year.

I am thankful that when i reached out to UWM i got a DR that does her job and could sift thru my issues and get me the help i needed. She did get my PCP up to speed (he even acknowledged that i am unique) and is now aware what nOH is and that there are components that fall under dysautonomia. She also helped with getting my PVD diagnosed as it was also being dismissed and at least i am getting help with that as well. And she did reach out to my Cardiologist and he has made changes to meds that have helped greatly.

I do have to say sorting thru serious issues vs a dysautonomia symptom and even a normal age related ache and pain for me is difficult. But as I learn thru your organization this is getting easier. 

[edriscoll]

@MikeO You were very lucky indeed to find an RN that took you seriously and referred you to a doctor willing to listen.  I think this all comes down to the same two issues - communication and collaboration.  A doctor that dismisses a patient or dismisses symptoms is a doctor that should be dismissed!  But a doctor who is willing to collaborate on your behalf and trust the patient when they report a symptom is a good physician, even if they don't know all they could about whatever the illness is. Knowledge can always be gained but it does require a willingness on the part of the doctor and the patient.  

My husband recently went through a long medical ordeal.  He became disoriented and paranoid after his sodium level dropped.  I had been through this with him before and knew that he was very sensitive to these drops in sodium levels.  What is "not that low" for some is very low for him.  When I reported it to the team, the doctor began shaking his head "no" before I even finished my sentence.  He immediately said "that's not low enough to cause this reaction"  To make a long story short, I had to contact a different doctor who knew us both very well, who immediately said to me "I'll trust your instincts" and started a saline drip.  His symptoms improved within a few hours.  When I saw the dismissive doctor the next day, he said "I learned something.  I never would have thought that small a shift could produce that reaction"  I replied "what you really learned was that sometimes it's worth listening to the patient and caregivers"  He said "well put".  

To this doctor's credit, he was able to put his ego aside and realize that he had not given good medical care because he made assumptions instead of listening.  If more doctors would do that, patient outcomes would improve.  

I'm very glad that you were helped and it is difficult to know what is dysautonomia and what is something else and what is normal aging.  But that is difficult for all of us, including our doctors.  

The last session is our series "Collaborating for Better Patient Outcomes"  is a roundtable discussion with a few people from various parts of the medical system and a few DINET members to discuss many of these topics.  How do we educate? How do we encourage collaboration? How do we communicate and advocate for ourselves and within the system?  and more. That session will premiere on 11/2   I'm excited to see some of the conversations we can spark between all of us.  

Have a great weekend.