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Which doctors should I go to to get diagnosed and get medication like clonidine?


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I want to my internist doctor today and told him everything and he brushed it all off.  Checked my blood pressure, said it was good. Listened to the heart, said it was good and took an EKG and it was normal and good. All of this turned out good while I'm sitting in his chair with a headache and inner vibrations. Left feeling hopeless. Guys, which doctor can actually treat this? Neurologist? Cardiologist? It sucks running from to doctor to doctor and getting nothing :( Please help!

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Who diagnosed you? My EP diagnosed me but he also performed a cardiac ablation on me thinking I had SVT. I talked to my neurologist and told him I was diagnosed with POTS and he told that is why my EMG was normal 2 years ago. He said I had autonomic neuropathy .  I’m sure I have had this a long time just went misdiagnosed like all of us. There is a list of autonomic specialist on the diner website. I’m being referred to a specialist on the website by my neurologist, but especially because of COVID it is a slow process. I know the feeling about running to so many doctors. 
 

 Here is a website of specialists 

 

http://www.dysautonomiainternational.org/page.php?ID=14

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@Fujitsu - I was first diagnosed with NCS ( neuro-cardiogenic syncope, also a dysautonomia ) by a cardiologist during TTT, and hyperadrenergic POTS was diagnosed by an autonomic specialist who did serum norepinephrine levels. 

6 hours ago, Fujitsu said:

I diagnosed myself haha. 

Unfortunately in order to be officially diagnosed you will have to have the diagnosis of a physician. I too suspected HPOTS due to my research when i first became ill but our suspicions do not count as a diagnosis. 

When you have symptoms of POTS ( mainly tachycardia upon standing and orthostatic intolerance ) your doctor should perform AT LEAST orthostatic VS in his office. Most cardiologists will be able to perform a standard TTT, which should confirm the diagnosis in most cases ( there are false-negatives ). Some neurologists have experience with POTS, so do some endocrinologists. There is no guarantee that any of those specialists will know about how to treat this, so it is best to search for someone that officially treats dysautonomia patients ( see our list under the physicians tab ). 

11 hours ago, Fujitsu said:

hecked my blood pressure, said it was good. Listened to the heart, said it was good and took an EKG and it was normal and good. All of this turned out good while I'm sitting in his chair with a headache and inner vibrations.

 Unfortunatley you are experiencing what is a typical finding for a POTS patient - the invisible illness. There normally are no audible murmurs or EKG changes associated with POTS, so a physical exam will not show any symptoms until you stand up, hence the importance to do orthostatic vital signs. There often is no change in BP - depending on the type of POTS. For me HR and BP can be perfectly normal sitting and changes as well as symptoms only show upon standing for a few minutes. 

When I first became ill - based on my symptoms and elevated HR and BP upon standing - my PCP ordered a TTT. After that I saw 4 more cardiologist that had different degrees of ignorance towards POTS. I did not find a proper diagnosis and treatment until I travelled 8 hours one way to a renowned specialist in the field. So I would recommend to ask your PCP to be referred to a cardiologist for a TTT to rule out ( or diagnose ) POTS and then seek help from a specialist ( they often have a long waiting list,  and some require a confirmed diagnosis prior to scheduling a visit ). 

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On 7/28/2020 at 2:07 PM, MomtoGiuliana said:

Our list of physicians is here

https://www.dinet.org/physicians/

 

On 7/28/2020 at 7:10 AM, Pistol said:

@Fujitsu - I was first diagnosed with NCS ( neuro-cardiogenic syncope, also a dysautonomia ) by a cardiologist during TTT, and hyperadrenergic POTS was diagnosed by an autonomic specialist who did serum norepinephrine levels. 

Unfortunately in order to be officially diagnosed you will have to have the diagnosis of a physician. I too suspected HPOTS due to my research when i first became ill but our suspicions do not count as a diagnosis. 

When you have symptoms of POTS ( mainly tachycardia upon standing and orthostatic intolerance ) your doctor should perform AT LEAST orthostatic VS in his office. Most cardiologists will be able to perform a standard TTT, which should confirm the diagnosis in most cases ( there are false-negatives ). Some neurologists have experience with POTS, so do some endocrinologists. There is no guarantee that any of those specialists will know about how to treat this, so it is best to search for someone that officially treats dysautonomia patients ( see our list under the physicians tab ). 

 Unfortunatley you are experiencing what is a typical finding for a POTS patient - the invisible illness. There normally are no audible murmurs or EKG changes associated with POTS, so a physical exam will not show any symptoms until you stand up, hence the importance to do orthostatic vital signs. There often is no change in BP - depending on the type of POTS. For me HR and BP can be perfectly normal sitting and changes as well as symptoms only show upon standing for a few minutes. 

When I first became ill - based on my symptoms and elevated HR and BP upon standing - my PCP ordered a TTT. After that I saw 4 more cardiologist that had different degrees of ignorance towards POTS. I did not find a proper diagnosis and treatment until I travelled 8 hours one way to a renowned specialist in the field. So I would recommend to ask your PCP to be referred to a cardiologist for a TTT to rule out ( or diagnose ) POTS and then seek help from a specialist ( they often have a long waiting list,  and some require a confirmed diagnosis prior to scheduling a visit ). 

Thank you so so much guys!!!!!!

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