Went to EP Cardiologist Yesterday

[JimL]

Went to EP Cardiologist Yesterday and I am still wondering what happened. They did an EKG, BP/O2/HR listened to my heard, read the report. He then goes on to tell me that these things are hard to treat and there's not much that works well. it depends on the underlying cause. Ok. I went through my history and he says to get the GI stuff looked at as GI problems can cause a vasovagal response that causes these problems and to get my thyroid checked too. He talks about some conference he went to in 2015 and how they said the three most important things were more salt, water and exercise as the desire to lay down and doing so will cause deconditioning. He said it's like a cardiovascular migraine. So I asked him, are you saying this is all in my head? He says no, that if he thought it was, he'd send me to a psychiatrist. He then says that my heart is fine, this won't kill me, I just have to find a way to live with it. I said, what if it makes things such that it gets in the way of work? Well, that happens and some people can't work anymore. Ok. I am starting to think I am being shuffled to specialists and there's nothing any of them can or will do. It's like a form of gaslighting. Or is it like this episode of Seinfeld:

 

 

At this point, I don't know what to do. This doctor wasn't old. Maybe 40-45 at most. If 1-3 million americans have this, why is it treated as such a rare and in some cases, fictitious disorder?

 

[WinterSown]

I think the doctor gave you fine advice and he told you the truth. 

53 minutes ago, JimL said:

Went to EP Cardiologist Yesterday and I am still wondering what happened. They did an EKG, BP/O2/HR listened to my heard, read the report. He then goes on to tell me that these things are hard to treat and there's not much that works well. it depends on the underlying cause. Ok.

This is the absolute truth. It is very hard to treat, even when they know the cause.

I went through my history and he says to get the GI stuff looked at as GI problems can cause a vasovagal response that causes these problems and to get my thyroid checked too.

This is true also. My EP calls my condition my CardioNeuroVasoVagalyThing. Thyroid check won't hurt, you might have a problem they can treat and help you get your energy back.

He talks about some conference he went to in 2015 and how they said the three most important things were more salt, water and exercise as the desire to lay down and doing so will cause deconditioning.

I will emphasize exercise training with a Doctor of Physical Therapy as opposed to a coach at the gym---we are way too complicated. A DPT will assess your capacities and create a program tailored to your needs. Mine keeps me moving throughout the entire session--it is a great workout and I come away feeling stronger and better innervated. 

He said it's like a cardiovascular migraine. So I asked him, are you saying this is all in my head? He says no, that if he thought it was, he'd send me to a psychiatrist. He then says that my heart is fine, this won't kill me, I just have to find a way to live with it. I said, what if it makes things such that it gets in the way of work? Well, that happens and some people can't work anymore. Ok. I am starting to think I am being shuffled to specialists and there's nothing any of them can or will do. It's like a form of gaslighting. Or is it like this episode of Seinfeld:

I haven't heard it called a cadiovascular migraine but okay, each doctor has their own vernacular. You don't need a shrink, you're not crazy--your ANS is. You are not being gaslighted, you are being told the truth--including finding ways of making your life get better. It's a LOT of tweaking your meds, your foods, your water, your habits, etc. 

At this point, I don't know what to do. This doctor wasn't old. Maybe 40-45 at most. If 1-3 million americans have this, why is it treated as such a rare and in some cases, fictitious disorder?

It isn't fictitious, you just didn't like what you heard from the doctor. Try he doctor's suggestions and tone down the hype that you keep telling yourself. You'll get better but it's not overnight, there is no simple solution,  and it's a lot of adjustments for meds and lifestyle.

 

 

 

[JimL]

54 minutes ago, WinterSown said:

I think the doctor gave you fine advice and he told you the truth. 

 

thing is, he said he doesn't have to see me anymore, that's it. I felt like he said, this is my advice, you're on your own. I just don't know what to make of doctor's reactions. Maybe I am reading into it too much, but I feel like they're missing something. Maybe it's triggering my own BS and I'll have to work on that, but the more doctors I go to, the slower an understanding and resolution is. My comments about fictitious etc are my perception of what some doctors may think of it. I've seen the same thing with CFS, fibromyalgia, etc. I've just become disgusted with the medical community after going through this. In some ways, they are different or better that what I do with computers. They have a bit more education and get paid better. Some of us have been raised to put them on a pedastal. Well, something things we were taught were wrong...If I was 30 years younger, I'd go to medical school just to figure this out.

[WinterSown]

You need help controlling your symptoms. Why doesn't he want to see you anymore? Haven't you been prescribed anything yet? You don't have a three-monther coming up?

 

 

 

[jklass44]

The very first cardiologist I saw treated me very similar to how you describe... He said my symptoms were just something I’d have to live with and that he recommended I see a therapist. (I was barely able to stand my flares were so bad!) Didn’t offer any tips or suggestions to help manage my symptoms, no talk of lifestyle changes or medications. He literally got up from his chair, walked over to the door and opened it and said good luck. In my opinion, any type of doctor should never treat a patient this way... I think it’s extremely disrespectful. I’m sorry you had to experience this!! If you’re not happy with him, find somebody else, especially if this doctor wasn’t willing to provide suggestions or medications or even offer a follow up appointment!

[MeganMN]

The Electrophysiologist that I saw said something almost exactly the same. He said I should go see a different Specialist. Felt like he just wanted me to go away.  

[bombsh3ll]

It is a hard condition to treat but we all need and deserve someone to work with us, follow up and try different things. There ARE many treatments out there, which work for SOME people, and you won't know unless you have the opportunity to try them. 

I have been completely on my own with it as well since 2014 - I am a doctor (GP) in the UK but had to give up work due to severe POTS. I have been lucky enough to access most of the available treatments however none has helped although licorice root was absolutely miraculous for about a year until the effects wore off. 

Keeping moving as much as you can helps - I cannot exercise upright but use a recumbent bike. Also hydration, I use Trioral ORS sachets, but stopped consuming large quantities of salt as is commonly advised, as it never helped me & there is no scientific evidence chronic salt loading produces lasting increases in plasma volume - it is simply urinated out, tastes vile, suppresses the renin-aldosterone axis and causes damage to blood vessels over the long term. 

I hope you manage to see someone worthwhile for ongoing care, even if they don't know much about dysautonomia to begin with, being willing to learn and work with you are what matters. 

B x

[JimL]

18 hours ago, WinterSown said:

You need help controlling your symptoms. Why doesn't he want to see you anymore? Haven't you been prescribed anything yet? You don't have a three-monther coming up?

 

 

 

No meds other than what I am already taking. Synthroid, metoprolol, lisinopril, esomeprosole and sucraflate. He said he doesn't need to see me. Thats one thing that threw me off that led me to believe in the brush off. What's a 3 monther?

[JimL]

18 hours ago, jklass44 said:

The very first cardiologist I saw treated me very similar to how you describe... He said my symptoms were just something I’d have to live with and that he recommended I see a therapist. (I was barely able to stand my flares were so bad!) Didn’t offer any tips or suggestions to help manage my symptoms, no talk of lifestyle changes or medications. He literally got up from his chair, walked over to the door and opened it and said good luck. In my opinion, any type of doctor should never treat a patient this way... I think it’s extremely disrespectful. I’m sorry you had to experience this!! If you’re not happy with him, find somebody else, especially if this doctor wasn’t willing to provide suggestions or medications or even offer a follow up appointment!

He wasn't disrespectful per se, but I didn't get many answers and nothing worth much. I already see a therapist for something else, so that's covered. My therapist has treated people who had pots and he said that even among therapists there is a theme that it's psychosomatic. He doesn't think that at all. He's been supportive. 

[JimL]

6 hours ago, MeganMN said:

The Electrophysiologist that I saw said something almost exactly the same. He said I should go see a different Specialist. Felt like he just wanted me to go away.  

Sucks, doesn't it? I don't know who would be next. 

[JimL]

3 hours ago, bombsh3ll said:

It is a hard condition to treat but we all need and deserve someone to work with us, follow up and try different things. There ARE many treatments out there, which work for SOME people, and you won't know unless you have the opportunity to try them. 

I have been completely on my own with it as well since 2014 - I am a doctor (GP) in the UK but had to give up work due to severe POTS. I have been lucky enough to access most of the available treatments however none has helped although licorice root was absolutely miraculous for about a year until the effects wore off. 

Keeping moving as much as you can helps - I cannot exercise upright but use a recumbent bike. Also hydration, I use Trioral ORS sachets, but stopped consuming large quantities of salt as is commonly advised, as it never helped me & there is no scientific evidence chronic salt loading produces lasting increases in plasma volume - it is simply urinated out, tastes vile, suppresses the renin-aldosterone axis and causes damage to blood vessels over the long term. 

I hope you manage to see someone worthwhile for ongoing care, even if they don't know much about dysautonomia to begin with, being willing to learn and work with you are what matters. 

B x

Medicine has suffered in the last 10 years here. When I lived in NY, I had two good internists in my life. THe first went to NYU and did his residency at Bellvue. He was a scientist that liked a good challenge as was the second guy. When I moved to Iowa I had a decent one there too, young and knowledgeable. In AZ, it was like going in the twilight zone. I have to wonder if they are used to treating old people and just figure they are in god's waiting room, why bother which affects work ethic. If I don't get answers, I will make an appointment with the doc I had in Iowa and fly back. He takes Blue Cross and is listed in the find a doctor website at BCBS. Americans like to bust on single payer, but it's getting down that road here and we pay for it as a choice in some cases. 

[jklass44]

22 minutes ago, JimL said:

He wasn't disrespectful per se, but I didn't get many answers and nothing worth much. I already see a therapist for something else, so that's covered. My therapist has treated people who had pots and he said that even among therapists there is a theme that it's psychosomatic. He doesn't think that at all. He's been supportive. 

I agree - there are many doctors of all different specialities that say POTS is psychosomatic. It sucks. I see a therapist for other reasons too, but I don’t think that should have been the point. Whether you’re dealing with something physical, emotional, mental, etc., we deserve to be treated fairly and if something isn’t working or clicking with a doctor/specialist, it is our right to move on and find someone who will work WITH US to help us through our symptoms. 

Best wishes!!

[JimL]

1 hour ago, jklass44 said:

I agree - there are many doctors of all different specialities that say POTS is psychosomatic. It sucks. I see a therapist for other reasons too, but I don’t think that should have been the point. Whether you’re dealing with something physical, emotional, mental, etc., we deserve to be treated fairly and if something isn’t working or clicking with a doctor/specialist, it is our right to move on and find someone who will work WITH US to help us through our symptoms. 

Best wishes!!

I agree. I just have my doubts in finding that. 

[potsiebarbie]

I had a very similar experience with the last cardiologist I saw. So discouraging and disappointing. 

[WinterSown]

17 hours ago, JimL said:

No meds other than what I am already taking. Synthroid, metoprolol, lisinopril, esomeprosole and sucraflate. He said he doesn't need to see me. Thats one thing that threw me off that led me to believe in the brush off. What's a 3 monther?

Perhaps he wants you to go back to whomever prescribed all those drugs. 

A three-monther is your every-three-months appointment with your doctor.  

 

 

[JimL]

3 hours ago, WinterSown said:

Perhaps he wants you to go back to whomever prescribed all those drugs. 

A three-monther is your every-three-months appointment with your doctor.  

 

 

My PCP looks at yearly's. I see him more often than that, but it's at my insistance or direction. 

[bombsh3ll]

Would it be possible to get a referral to one of the large specialist centres that deals with dysautonomia?

B x

[JimL]

1 hour ago, bombsh3ll said:

Would it be possible to get a referral to one of the large specialist centres that deals with dysautonomia?

B x

I could go to Mayo, but after going there for a neuro ophthalmologist, I wasn't impressed. No root cause analysis for my diplopia. Never had eye problems in my life. She was like, you hve 4th cranial nerve palsy and probably have for awhile, but you've decompensated. That was it. Sends the report to my regular eye doctor who tells me I can get prism glasses. Like I said, other than age related far sightedness, I've had good eyesight. I am starting to wonder why I have doctors that don't seem to give a crap. I don't really have the means to go out of state and I don't have any sick time or vacation left and I work for the state. We acrue sick at half the rate of vacation. AZ is a cheap a$$ state to work for.

[Pistol]

Throughout the years of dealing with POTS I have noticed that MOST cardiologists and EP's do not want to deal with POTS. They would have to re-think their whole way of approaching their field of expertise. Out of 5 cardiologists I only found one that was willing to acknowledge that I have POTS ( this was prior to diagnosis ) and he admitted that he did not know how to treat it. After diagnosis by a renowned autonomic specialist I had to find a local cardiologist as well and went back to him and he has been very willing to educate himself and work with my specialist. He actually sees other POTS patients now - I hope he will decide to specialize in that field. He is very good. He also told me that at most cardiology seminars the docs tune out and even leave the room when POTS is brought up - they do not want to touch it. That is why I believe the cardiologist you saw told you what HE believes is true - that there is no cure and you have to "just deal with it". That is untrue. There are many meds as well as other treatments that can help - but it is a long road to finetune the correct meds, since there is no one-fits-all treatment. It is frustrating for both physicians as well as patients and most docs will not touch us for that reason. So - keep looking. I was fortunate to have an extremely compassionate and good PCP who stood by me when the cardiologists sent me away. You just need ONE good one to make it through this ordeal - so keep looking!!!! 

[MeganMN]

I feel like most of us with this diagnosis spend a fair bit of time trying to find someone to listen and help us navigate the wide, unknown world of dysautonomia.  One of the ER doctors that I work with said to me, "Megan, it is so much easier to walk into the doctor and get a hernia repair, or a cast for a broken arm.  But what you have is different.  There is not road map.  There is no set course.  And that is much harder to deal with for both you and the doctor."  The Internal Medicine doctor that I am seeing is ordering all sorts of tests and it may all come back clear, with no reason or explanation for all of this, but it still makes me feel better to know that there is not something wring that can be FIXED.  In the end, I may still end up on meds to control the symptoms of a known diagnosis for an unknown reason, but it is still nice to rule things out that could explain what is going on.  The EP that I saw had no idea what to do with me.  He did not really even seem to want to try.  The Cardiologist was the same way, and they will not even see me now because they do not want to step on the EP's toes.  In order for me to get any decent Cardiology help I am going to have to go out of network to a completely different hospital system.  Or system is definitely broken.  We have become a system of throwing a band-aid at something and hoping it helps.  The weird, unexplained stuff is not something that most doctors wants to deal with.  Sorry you had that experience.  I know, for me, it is not as easy as just getting a different doctor or finding someone else, because I cannot afford it and my insurance only really covers in-network.  Hang in there, talk to us, and I have taken SOME comfort in knowing that although this feels like my life has totally spun out of control, I am not going to drop over dead from this, and I just have to try and be persistent in researching and trying to figure things out on my own and hope that along the way I can find doctors who want to help me.  

[JimL]

1 hour ago, MeganMN said:

I feel like most of us with this diagnosis spend a fair bit of time trying to find someone to listen and help us navigate the wide, unknown world of dysautonomia.  One of the ER doctors that I work with said to me, "Megan, it is so much easier to walk into the doctor and get a hernia repair, or a cast for a broken arm.  But what you have is different.  There is not road map.  There is no set course.  And that is much harder to deal with for both you and the doctor."  The Internal Medicine doctor that I am seeing is ordering all sorts of tests and it may all come back clear, with no reason or explanation for all of this, but it still makes me feel better to know that there is not something wring that can be FIXED.  In the end, I may still end up on meds to control the symptoms of a known diagnosis for an unknown reason, but it is still nice to rule things out that could explain what is going on.  The EP that I saw had no idea what to do with me.  He did not really even seem to want to try.  The Cardiologist was the same way, and they will not even see me now because they do not want to step on the EP's toes.  In order for me to get any decent Cardiology help I am going to have to go out of network to a completely different hospital system.  Or system is definitely broken.  We have become a system of throwing a band-aid at something and hoping it helps.  The weird, unexplained stuff is not something that most doctors wants to deal with.  Sorry you had that experience.  I know, for me, it is not as easy as just getting a different doctor or finding someone else, because I cannot afford it and my insurance only really covers in-network.  Hang in there, talk to us, and I have taken SOME comfort in knowing that although this feels like my life has totally spun out of control, I am not going to drop over dead from this, and I just have to try and be persistent in researching and trying to figure things out on my own and hope that along the way I can find doctors who want to help me.  

I can go out of network, but it will cost me 50%. When the EP called it like a migraine, I asked, what if I can't deal with working and he said, some people can't. He wasn't cold and impersonal, in fact he was almost hypno-suggestive, not really patronizing, by trying to be compassionate. I just get paranoid that there's something in my chart that says nut job and I'm getting passed around in the hope I give up. I know that sounds paranoid, but maybe it's just as simple as you all say. They know what they don't know and don't want to know. 

[JimL]

6 hours ago, Pistol said:

Throughout the years of dealing with POTS I have noticed that MOST cardiologists and EP's do not want to deal with POTS. They would have to re-think their whole way of approaching their field of expertise. Out of 5 cardiologists I only found one that was willing to acknowledge that I have POTS ( this was prior to diagnosis ) and he admitted that he did not know how to treat it. After diagnosis by a renowned autonomic specialist I had to find a local cardiologist as well and went back to him and he has been very willing to educate himself and work with my specialist. He actually sees other POTS patients now - I hope he will decide to specialize in that field. He is very good. He also told me that at most cardiology seminars the docs tune out and even leave the room when POTS is brought up - they do not want to touch it. That is why I believe the cardiologist you saw told you what HE believes is true - that there is no cure and you have to "just deal with it". That is untrue. There are many meds as well as other treatments that can help - but it is a long road to finetune the correct meds, since there is no one-fits-all treatment. It is frustrating for both physicians as well as patients and most docs will not touch us for that reason. So - keep looking. I was fortunate to have an extremely compassionate and good PCP who stood by me when the cardiologists sent me away. You just need ONE good one to make it through this ordeal - so keep looking!!!! 

I'll have to look through the resources of DI to see who's local.