Most Cliche` Cardiology Appointment Ever

[HopeSprings]

So I go see a local Cardiologist (first mistake) armed with articles (pointless) about hyperPOTS and deconditioning. I had two goals: get him to give me a prescription for laying and standing Norepinephrine and if positive again, talk to him about treating with Clonodine or similar medication recommended for HyperPOTS; have him help me determine if I'm deconditioned (based on criteria listed in article) and/or if I have a smaller than usual heart. If yes, ask him to send me for cardiac rehab. I figured no need for a far away specialist - a local Doctor could handle these requests.

Here's how it went:

"So you have orthostatic hypotension" (cliche` #1)

"No, I have POTS"

"I've never heard of that, what does it stand for?" (cliche` #2) At this point I knew I was in trouble and pictured myself running out of there like the roadrunner, leaving only a puff of smoke.

"Postural Orthostatic Tachycardia Syndrome"

All he hears is "orthostatic" and says, "You have orthostatic hypotension."

"No, I have orthostatic tachycardia"

"I've never heard of orthostatic tachycardia. So you have palpitations. How often?"

"Um, when I stand up" (hence the "orthostatic")

So he doesn't trust me that I don't have OH, and says "I'll be the judge of that"... even though I have just shown him tilt test results which shows OI, not OH. He makes me lay down and stand up to take my blood pressure.

"You don't have Orthostatic Hypotension"

"I know, I have POTS"

"What you have is very rare. No other patient in my practice has this." (cliche` #3)

"So anyway, Dr, there is this thing called Hyperadrenergic POTS. I was hoping to be tested.... they treat with Clonodine..." I break out the article and past norepi results.

He looks at past norepinephrine blood results which were 1001. And says, "I don't think this means anything, it's only slightly elevated."

I try to bring up deconditioning, break out the article - he's not listening, he has his own agenda.

"So here's what we're going to do - a 24 hour holter monitor and an echocardiogram." Standard Cardiologist protocol I guess.

So here I sit with leads on my chest, a heavy black box hanging from a strap around my neck that smells like old lady perfume, which I'm sure is residue from his poor last victim. Nice man, but if he would have just listened to me, took the time to look at the info in my articles, I would have met my objectives today. And I do blame myself- I should have known better. But the good thing is for the first time I'm not upset or angry - I'm actually amused and had to share with the only people in the world who would understand why.

[Katybug]

You should have asked him how he knows that "no other patients in his practice" have this rare condition if he's never heard of it before. Kinda hard to diagnose when you've never heard of it!

But, seriously, I'm sorry you had to waste your time today. The up side is you might get some info if they measure your heart during your echo.

[imapumpkin]

That's so frustrating, I'm sorry. The worst is a medical professional who refuses to listen to you. Often doctors just see us as an assembly-line patients; just another diagnosis. Definitely research a cardiologist who has heard of POTS or at the very least, is more compassionate. Whenever I tell someone in the medical field that I have POTS, and they say "What's that?" I want to scream "OMG GOOGLE IT." Unfortunately we all have to be ambassadors for our own illnesses because more often than not, doctors aren't invested enough to do their own independent research on the subject (like my PCP who feels she has no obligation to look into a condition that one of her patients has. Yes, I am the only patient at the practice who has it, but don't you think it might behoove a doctor or a doctor's office to educate themselves when they find out about something new or obscure so as to better treat their patients?)

It's also okay to say to a doctor "I feel like you're not listening to me/not hearing what I have to say".

ALSO-- if he wants to do more tests, ask for a cardiac Event Monitor; that's how my cardiologist diagnosed my POTS. It's a little device that looks like a flat remote control and you press it right up against your chest only when you are having an episode of tachycardia and press a button that records it for about 30 seconds, then you transmit it over the phone to the lab. Holters can't show that the increased heartrate is due to orthastic change, even if you do write it down on the little piece of paper they give you...if he's not going to listen to you in person, chances are he won't put much stock in what you record for your holter.

[sue1234]

Oh, I can so commiserate!

I had a new neuro appt. Monday that was a similar scene: (I went with articles about CCSVI and blood flow causing dysautonomia)

"So what can I help you with?"

"Well, I get lightheaded when I've been standing. I have POTS, postural orthostatic..."

"So you get low blood pressure with standing?"

"No, I actually get high blood pressure"

"That doesn't make sense. You should NOT get lightheaded IF your blood pressure is going up"

"Well, I do."

"Then what did you come to see me for?! You should go see a cardiologist"

"I did and they tried beta blockers that made me worse."

"You should go back to the cardiologist. They can try another medication"

I am not good with witty comebacks, so I didn't say much back except "okay". Obviously I didn't even get to mention the blood flow thing. I walked out of there wondering how he has any patients. On a better note, I also saw a new endo that was FANTASTIC! She's going to work with me regarding my hypoglycemia.

[Relax86]

Naomi ~ this was a great post. I loved it; very amused at how you wrote it. Sorry for the continued ignorance of the medical community. So bad when med school means you no longer need to keep learning.

[kitt]

.

[Chaos]

Ok Naomi- just saying- if you can run out of there like the roadrunner, leaving only a puff of smoke behind....you're not deconditioned. LOL

I was reading something by a CFS specialist MD recently who was saying that 97% of CFS patients have "flattening of T-waves" on holter monitor tracings. He was saying it was "so consistent that if a patient didn't have that flattening, they were less prone to thinking they had CFS." I'd be curious to see if your cardiologist is aware of that or mentions anything about it. Maybe that's too rare for him to know about either.

Why is it that just because something is rare doctors want to dismiss it as impossible for you to have?

Thanks for posting your experience. Have been thru several appointments with very similar dialogues. I think they must rehearse this in med school...."what to say to a patient with a rare medical condition when you don't know anything about their situation".

Better luck next time!

[Angela]

my opinion is that most docs, either cardio's, ecardio's, or neuros will start off on a beta blocker or alpha/beta blocker as treatment. U just have to argue if you have a gut feeling it's the right try for u, or not. My neuro tried to put me on clonodine, and I said No, No, no, no....................LOL. Funny, cause I was the one who asked him to prescribe it which he totally agreed with, but afterwards I didn't want to fill rx cause had a feeling i would get sick. But......at least he listened to me and prescribed one of the "protocol" for hypers. Albeit, when I asked about Mast cell, he, along with most docs said it is very hard to test for and on my own research, after taking h1's and h2's, although I dont "flush" it seems to help so much. I'll try to post more on that later sometime from another forum i look at. The symptoms for pots and mast cell issues and other dyso's are so similarly ridiculous I dont know which turned the kettle black. did I say that right?

[corina]

Thanks for sharing Naomi, it brought a smile to my face as I could picture you sitting there trying your best to make this doc understand. I'm sorry he didn't listen but what stood out for me is that you weren't angry or upset. It seems you have made a step forwards and won't let ignorant doctors get you. Good for you!!!

[misstraci]

awww, I couldn't help but giggle when i was reading your post! It was funny. However, I am sorry that it didn't turn out as you had hoped. This is an ongoing issue for me as well. I keep going to local doctors (i'm sure some are good, but most are uninformed) and I have high hopes and keep getting let down. Hope the next one is better for you!

[targs66]

Jeez, so sorry you had to go through this -- but I am so glad that you could walk away feeling not too upset. It's so disappointing when you get your hopes up only to realize you've wasted your time. I've learned the hard way that I have to tell myself "okay, this guy isn't going to help me so I'll just have to keep looking..."

Of course, it helps enormously to be able to tell everyone here about it!!!! Hope your next visit goes much, much better.

[Foggy01]

So I go see a local Cardiologist (first mistake) armed with articles (pointless) about hyperPOTS and deconditioning. I had two goals: get him to give me a prescription for laying and standing Norepinephrine and if positive again, talk to him about treating with Clonodine or similar medication recommended for HyperPOTS; have him help me determine if I'm deconditioned (based on criteria listed in article) and/or if I have a smaller than usual heart. If yes, ask him to send me for cardiac rehab. I figured no need for a far away specialist - a local Doctor could handle these requests.

Here's how it went:

"So you have orthostatic hypotension" (cliche` #1)

"No, I have POTS"

"I've never heard of that, what does it stand for?" (cliche` #2) At this point I knew I was in trouble and pictured myself running out of there like the roadrunner, leaving only a puff of smoke.

"Postural Orthostatic Tachycardia Syndrome"

All he hears is "orthostatic" and says, "You have orthostatic hypotension."

"No, I have orthostatic tachycardia"

"I've never heard of orthostatic tachycardia. So you have palpitations. How often?"

"Um, when I stand up" (hence the "orthostatic")

So he doesn't trust me that I don't have OH, and says "I'll be the judge of that"... even though I have just shown him tilt test results which shows OI, not OH. He makes me lay down and stand up to take my blood pressure.

"You don't have Orthostatic Hypotension"

"I know, I have POTS"

"What you have is very rare. No other patient in my practice has this." (cliche` #3)

"So anyway, Dr, there is this thing called Hyperadrenergic POTS. I was hoping to be tested.... they treat with Clonodine..." I break out the article and past norepi results.

He looks at past norepinephrine blood results which were 1001. And says, "I don't think this means anything, it's only slightly elevated."

I try to bring up deconditioning, break out the article - he's not listening, he has his own agenda.

"So here's what we're going to do - a 24 hour holter monitor and an echocardiogram." Standard Cardiologist protocol I guess.

So here I sit with leads on my chest, a heavy black box hanging from a strap around my neck that smells like old lady perfume, which I'm sure is residue from his poor last victim. Nice man, but if he would have just listened to me, took the time to look at the info in my articles, I would have met my objectives today. And I do blame myself- I should have known better. But the good thing is for the first time I'm not upset or angry - I'm actually amused and had to share with the only people in the world who would understand why.

Naomi I'm so sorry this happened. I've had similar experiences before. Please don't give up. What I think you need to find is a "General Physician", and maybe one who has dealt with people who have had chronic illnesses before and is used to sticking with people even if the answer isn't so simple. A nice doctor recommended me to a colleague of his that fits this profile. I hope you can find someone the same. A very specialised doctor I find (neurologist/cardiologist) frequently has little interest in something so systemic as POTs and its underlying cause. A General Physician I think would be far more likely to be willing to look at a systemic illness that effects so many things and most of all (the most important thing) be willing to learn about something new (such as new evidence on the efficacy of exercise therapy [Levine et al.] and how beta blockers are not a good option). You need to find a doctor willing to learn about new illnesses and take on board new science. I wish you the best of luck in this.

I think the first step would be to call your local medical centres and try and find a general physician. There aren't many left around. Everyone is specialised so much. But I think you can do it. Good luck. Let us know how it goes. I myself am trying to get a doctor to sign me up for Levine's treatment and I hope I can do it.

[jpjd59]

Naomi:

Thank goodness you still have your sense of humor!!! That's the wonderful thing about this forum - people can relate to what you are going through and they don't feel so alone when they have useless doctor appointments.

I hope you get some answers soon.

Pam

[HopeSprings]

You all make such great points and thanks for responding and relating to me (as always).

You need to find a doctor willing to learn about new illnesses and take on board new science.

Exactly! I don't expect every Doctor to be a POTS expert, but when I'm hand feeding you the information, at least be open minded and take a look at what I've brought.

You should have asked him how he knows that "no other patients in his practice" have this rare condition if he's never heard of it before. Kinda hard to diagnose when you've never heard of it!

I know! And believe me, many saracastic comments came to mind, but I controlled myself. He might have been face to face with other POTsies before and completely missed the diagnosis.

Chaos- interesting about the Holter results in CFS. I'm going to ask about this when I follow up with him for results.

[Foggy01]

Naomi I've found that general physicians and (to a lesser extent) geriatricians are far better than going to a cardiologist when you want them to pay attention to POTS and new research. Do you think it's an option for you to find one in your area?

[HopeSprings]

I haven't found anyone very good around here. All the primary care Doctors seem to mostly push you off onto specialists. I can go into the city and see the POTS neuro who diagnosed me, but it's hard for me to get there, so I can't be running into NYC every time I have a new idea. And in this case one of the things I wanted to look at specifically was deconditioning and the shape my heart is in. He is doing the echo, so I'm going to bring this up again when we meet to discuss results.

[HopeSprings]

Oh and I just remembered, I did bring up HyperPOTS a while back to the POTS neuro. I showed him the high Norepi and he said I didn't necessarily have HyperPOTS, but this can be a finding in POTS in general. I just don't want to try potent drugs that might make me sicker (I'm hypersensitive to medication), unless I know for sure I have the thing we're trying to treat.

[Dizzysillyak]

I'm sorry this didn't work out like you had planned but I enjoyed reading your story.

I'm not sure how holter monitors work but if you did a pmttt and forced yourself to have a pots episode would it show up ? If so, how about doing 2 or 3 so he believes it.

Tc .. D

[HopeSprings]

Dizzy - all I know is I asked the secretary if it picked up minute to minute heartrate and she said yes. They also have you keep a diary where you write down your symptoms, what time they happened and what you were doing. So I was able to write stuff like standing on the playground 3pm, rapid heart, took the stairs 10am, rapid heart etc. So I guess between the diary and the data picked up by the monitor he can kind of put two and two together.

[Dizzysillyak]

Hi naomi

Are you still wearing this ? If so how about doing a pmttt yourself to make sure your pots is documented?

Fwiw, I'd need to lay down for an hour prior to get my hr down to my normal resting hr.

Since your doc isn't up on pots he may need to see this. tc .. D

[diamondcut]

Dizzy - all I know is I asked the secretary if it picked up minute to minute heartrate and she said yes. They also have you keep a diary where you write down your symptoms, what time they happened and what you were doing. So I was able to write stuff like standing on the playground 3pm, rapid heart, took the stairs 10am, rapid heart etc. So I guess between the diary and the data picked up by the monitor he can kind of put two and two together.

And that makes me laugh too Naomi, they dont seem to understand when you say i am super sensitive i dont want to go on something that is not right for me, i would like a 50/50 chance anyway!

Its a bit like they just want you to throw wet tissue paper at the ceiling, keep doing it surely some will stick, never mind the mess you make!

[Foggy01]

I haven't found anyone very good around here. All the primary care Doctors seem to mostly push you off onto specialists. I can go into the city and see the POTS neuro who diagnosed me, but it's hard for me to get there, so I can't be running into NYC every time I have a new idea. And in this case one of the things I wanted to look at specifically was deconditioning and the shape my heart is in. He is doing the echo, so I'm going to bring this up again when we meet to discuss results.

Hmmm if you could convince your neuro to do the cold pressor test and such and rule out neuropathies then he might be amenable to thinking in terms of cardiac deconditioning. He might know an exercise therapist or cardiologist that would be willing to look into Levine's research and prescribe something similar to Levine's for you, or would get in contact with them and register you so you could know what their protocol is and monitor you while you follow it. This is sort of the route I have followed and am trying to follow at the moment. If you can rule out neuropathies and get the name of a guy who would pay attention to the cardiac deconditioning angle (doctors would sort of know who out of their colleagues would be the best for this) then you could hopefully get better.

Btw an echo probably won't show up a small heart. Levine had to use MRI to calculate the mass. Also the size isn't seen as pathological to most cardiologists, so they will need to read up on Levine's research anyway to understand how this size can effect you in these ways. I don't really think you need an MRI or anything though. An exercise stress test with oxygen measurements should be enough to convince a cardiologist you need an exercise rehabilitation therapy. As long as you've got neuropathies ruled out a good cardiologist I would hope would recognise someone in need of cardiac rehab just by the exercise test. (no need for cardiac mri to measure mass)

[HopeSprings]

I feel like I'm taking up too much air time - sorry about that. Foggy - small fiber neuropathy has been ruled in through skin biopsy (although one biopsy showed yes and another showed no) and he thinks my Valsalva test shows autonomic neuropathy. I think at the very least I do have sensory neuropathy based on symptoms, but can't say for sure if this is separate from POTS or causing it. I always get results that contradict eachother or might suggest things, but they're not sure. Like the standing norepi - it was very high once and totally normal another time. So HyperPOTS or not? I don't know - which is I why I wanted a tie breaker test. I did have an exercise stress test several years ago - maybe I can have him look at those results and tell me if it shows anything abnormal.

[Foggy01]

I feel like I'm taking up too much air time - sorry about that. Foggy - small fiber neuropathy has been ruled in through skin biopsy (although one biopsy showed yes and another showed no) and he thinks my Valsalva test shows autonomic neuropathy. I think at the very least I do have sensory neuropathy based on symptoms, but can't say for sure if this is separate from POTS or causing it. I always get results that contradict eachother or might suggest things, but they're not sure. Like the standing norepi - it was very high once and totally normal another time. So HyperPOTS or not? I don't know - which is I why I wanted a tie breaker test. I did have an exercise stress test several years ago - maybe I can have him look at those results and tell me if it shows anything abnormal.

Hmmm sorry I didn't realise it was so complicated. You seem to be in complete limbo not knowing if you have neuropathy or not. If you do it would complicate matters in ways I couldn't guess. I think the mayo and others still think exercise rehabilitation can help even if one does have neuropathies, so you're on the right track investigating this angle even if you do. Really hope you can find someone to help you unravel all this soon and help you on the path to recovering some form of normalcy.

Btw my valsalva showed some form of "early autonomic failure" (can't remember the exact words) but when I went to the mayo they ruled out neuropathies, so the "primitive" test I had here at home may have suggested something but it was ruled out. (I think they referred to it as primitive or something like that ). So there's still hope you don't have a neuropathy even if your valsalva indicates something. More extensive tests might show you're ok.

But either way I hear exercise therapy can help those even with mild neuropathies. Hope you can find someone to help you along this route. Good luck. :-)

[targs66]

Just wanted to add my 2 cents -- don't worry about "taking up airtime"! I find that I learn from virtually everything that's posted here - even if it doesn't seem immediately related to my specific condition, it might give me a clue as to what is going on with me .....