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Pistol

cardilology community STILL dismissive of dysautonomia

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I saw my local cardiologist for a follow-up this week. Although not my autonomic specialist he is involved in my dysautonomia care and is knowledgeable in it, he sees other dysautonomia patients as well. He is kind, patient and willing to educate himself about POTS ( which is a rare gem of a doc!!! ).

Well - he told me that in the community of his peers ( it is a University Medical Center ) a vast majority of physicians actually refuse to treat POTS patients. He states that when the subject comes up in Seminars or academic meetings they leave the room or zone out. He claims this is because the mechanism of dysautonomia is not merely a cardiac issue but rather affects the entire body ; therefore they do not feel that it is a condition that they should be consulted for.  He also states that many of them encounter patients that claim to have dysautonomia but do not and will not take no for an answer.  I guess that explains why so many of us are told to take a beta blocker and get out 😠! I have encountered many physicians that still dismiss dysautonomia and this is hugely based on their being uneducated regarding this disorder. There are too many of them that have stated to me that "they have an opinion" about it and do not consider it a real affliction. 

I have called several major medical institutions in my state and also sent emails demanding this situation to change - admittedly with very little effect. My 15 year old daughter has developed POTS symptoms ( HPOTS runs in all females in my family for 3 generations ) and I WILL NOT put her through what most of us had to endure. Luckily I have support from my autonomic specialist and he guides me in her treatment. Most other people are not that lucky. I encourage everyone experiencing dysautonomia symptoms to educate themselves, be proactive and challenge these physicians by standing up to them with knowledge. When seeing a new doctor it is important to have a list with Vital signs ( best a series of orthostatic sets ), all of the symptoms we experience and questions regarding these findings. If they feel qualified to dismiss all of these facts then they should also be able to explain them to us. I personally would not accept simply a prescription for a beta blocker and a 6-12 months follow -up. We deserve to either be taken serious and treated or he/she should refer us to a more educated specialist ( which many do not do b/c it would require them to admit their failure to be able to tackle dysautonomia ). 

We deserve better !!!!!!11

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3 hours ago, Pistol said:

Well - he told me that in the community of his peers ( it is a University Medical Center ) a vast majority of physicians actually refuse to treat POTS patients.

I think that Electrophysiologists have a slightly better record in that they specialize in heart rhythm disorders and we fit that diagnosis a bit better. I see a local EP and she is great, knows about and treats POTS, NMH etc., though she readily admits that she is not an expert.

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8 hours ago, Pistol said:

I saw my local cardiologist for a follow-up this week. Although not my autonomic specialist he is involved in my dysautonomia care and is knowledgeable in it, he sees other dysautonomia patients as well. He is kind, patient and willing to educate himself about POTS ( which is a rare gem of a doc!!! ).

Well - he told me that in the community of his peers ( it is a University Medical Center ) a vast majority of physicians actually refuse to treat POTS patients. He states that when the subject comes up in Seminars or academic meetings they leave the room or zone out. He claims this is because the mechanism of dysautonomia is not merely a cardiac issue but rather affects the entire body ; therefore they do not feel that it is a condition that they should be consulted for.  He also states that many of them encounter patients that claim to have dysautonomia but do not and will not take no for an answer.  I guess that explains why so many of us are told to take a beta blocker and get out 😠! I have encountered many physicians that still dismiss dysautonomia and this is hugely based on their being uneducated regarding this disorder. There are too many of them that have stated to me that "they have an opinion" about it and do not consider it a real affliction. 

I have called several major medical institutions in my state and also sent emails demanding this situation to change - admittedly with very little effect. My 15 year old daughter has developed POTS symptoms ( HPOTS runs in all females in my family for 3 generations ) and I WILL NOT put her through what most of us had to endure. Luckily I have support from my autonomic specialist and he guides me in her treatment. Most other people are not that lucky. I encourage everyone experiencing dysautonomia symptoms to educate themselves, be proactive and challenge these physicians by standing up to them with knowledge. When seeing a new doctor it is important to have a list with Vital signs ( best a series of orthostatic sets ), all of the symptoms we experience and questions regarding these findings. If they feel qualified to dismiss all of these facts then they should also be able to explain them to us. I personally would not accept simply a prescription for a beta blocker and a 6-12 months follow -up. We deserve to either be taken serious and treated or he/she should refer us to a more educated specialist ( which many do not do b/c it would require them to admit their failure to be able to tackle dysautonomia ). 

We deserve better !!!!!!11

I think this is frustrating but change is going to take time. Like a LOT of time.  In 15 years of having dysautonomia, awareness has actually increased dramatically and there are many more doctors and resources now than there used to be. It is like night and day compared fo what it used fo be. I am sure as the word continues to spread things will improve even more in the long run.   In the meanwhile, as a patient it is hard to work with doctors who don’t understand and aren’t interested. When that happens to me, I just move onto the next. 

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I hear you and understand your feelings @Pistol I have had better luck with neurologists I think because they do tend to look beyond just the cardiovascular symptoms as they are more common in other neurological diseases. Having said that, before I was diagnosed (by a neurologist) I thought I had CFS and at the first neuro appointment I asked if she diagnosed CFS and got a very curt no! So apparently they too have diseases they don’t believe in. I had initially asked my then current neurologist for a referral to an ANS specialist because I read a book indicating CFS was related to the HPA axis and he immediately referred me to my current neurologist for dysautonomia. So he knew about it 5 years ago. I have been referred to several EPs (when I was thinking of switching) at several different hospital groups in my area that treat it. I think part of it is because the dysautonomia clinic I attend (EP and neurologist along with several NPs) have done a LOT of outreach in the area for PCPs, cardiologists, neurologists, physical therapists etc.  I know they held a sort of mini-conference, a one day affair, with Dr Raj, Dr Goodman and others, including the locals that was attended by 300+ people, Drs and patients but geared for Drs. That seemed to really spring board awareness in the area and I have met other patients and schedulers that know about it. Of course the downside is that now instead of every three month follow ups I have to wait a year because the neuro clinic is so busy! So, keep pushing and spreading the word. It does help.

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I've never understood why cardiologists are associated with POTS treatment. POTS is a dysfunction of the autonomic nervous system, not a heart dysfunction. It's like going to a store that sells car batteries when your problem is a broken alternator. They're related, but not the same thing. Fixing heart rate doesn't fix the cause of the issue. I also don't like that it's called POTS because that causes doctors to focus primarily on the orthostatic issues, but we all know POTS causes so many other problems. Sleep and adrenaline are much bigger issues for me than getting dizzy while standing. I think doctors are just really intimidated because POTS is a whole-body problem and our medical system is designed to split everything into one particular area of the body and if something doesn't fit neatly into a box they can't help you.

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10 hours ago, KaciCrochets said:

I've never understood why cardiologists are associated with POTS treatment. POTS is a dysfunction of the autonomic nervous system, not a heart dysfunction.

The reason cardiologist often get consulted for dysautonomia is because it causes tachycardia, BP problems, chest pain, palpitations, fainting … all of these symptoms are a reason for a cardiologist referral, mostly to rule out something more life threatening than POTS. But that does not mean that the cardiologists know how to diagnose or treat it once they have ruled out something else. 

 

10 hours ago, KaciCrochets said:

I also don't like that it's called POTS because that causes doctors to focus primarily on the orthostatic issues, but we all know POTS causes so many other problems

I totally agree about the name!!! I always thought something like autonomic neuro cardiogenic imbalance ( ANCI for fancy!!! ) or dysautonomia with cardio-vascular impairment ( DCVI ) would be better ( I made these names up but they sure do sound good! ). Or maybe Autonomic Disorder with cardio-vasculo-gastro-uro-neuro-somno-cognitive malfunction ( in short ADCVGUNSCM ). 

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@KaciCrochetsas you know I was diagnosed by the same neurologist as you but referred to a cardiologist in the same group when my hypertension got too bad. He and his NP now work on that aspect of things and the neurologist the rest of my considerable PITS issues. My PCP is playing a larger role because my neurologist is so busy. I agree that the way healthcare is organized by body part impacted is crazy. I have found that more holistically oriented PCPs look at the sum of everything rather than the parts. 

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In my personal experience, I can definitely see this to be true. When I did my tilt table test a year ago it was a very positive sign for POTS or at least some form of dysautonomia. The nurses doing the test even thought so. However when my cardiologist reviewed the results he basically said I had a 0% chance of having POTS if I remember correctly. One reason being is because I didn't have symptoms for greater than six months. He came off very rude and said I was just dehydrated. He also kept asking why I was so anxious and to get my anxiety under control. My impression of him at the time was that he didn't even think POTS was that serious in the first place or he personally believed it was due to anxiety.

Cardiologists usually see diseased and abnormal rythm hearts all the time mainly in older patients who are their most common patients. So when they see younger people with normal functioning hearts they just think nothing is wrong with them and they are just suffering from anxiety or dehydration which is causing the tachycardia. I can definitely see how some probably think the condition doesn't even exist. 

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@Jwarrior77 - I am so sorry that happened to you!!! It is so cruel the way some specialists treat POTS patients. 

41 minutes ago, Jwarrior77 said:

Cardiologists usually see diseased and abnormal rythm hearts all the time mainly in older patients who are their most common patients. So when they see younger people with normal functioning hearts they just think nothing is wrong with them and they are just suffering from anxiety or dehydration which is causing the tachycardia. I can definitely see how some probably think the condition doesn't even exist. 

You are right on the money - I totally agree with this assessment because I have met doctors like that, they fit exactly in that category. 

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