Gotta Love It (awesome things doctors say)

[MeganMN]

Figured we should have a little bit of not so funny fun. Tell me some of the really lame things your doctor's have said. I went to the Oncologist today to see him about my elevated biomarkers for Carcinoid.  He is recommending a repeat of all the tests again before he does a scan. When questioning me about the tachycardia/dysautonomia/dizziness/etc., He said, "well, couldn't that just have been from anxiety?"  Oh bother.  I could not even elicit an adequate response. ........

[StayAtHomeMom]

First cardiologist I seen: I requested a TTT to rule out POTS and other autonomic dysfunction (had been sick for about 9 months at this point and my doctors were coming up with nothing). His assistant took notes, asked questions. He swept in the room and checked my HR (it was 106 when I walked into his office) and had me stand and checked it again. Said it was anxiety and my smoking. In no way did I have any kind of autonomic dysfunction and refused my request for a TTT. I was flabbergasted and livid. 

After I left I started doing a poor man's tilt table every day for a month. Brought the data to my pulmonologist (had a checkup) and my PCP. My PCP sent me to my second cardiologist who did put me on a TTT after looking at my and diagnosed my POTS. 

It turned out ok in the end. But even still I want to write that doctor and correct him. It has been 2 years. Still makes my blood boil. 

[Pistol]

Back in 2011 my cardiologist ordered a second TTT. He was unable to do the test so it was done by the EP at the same hospital. The test was clearly positive for POTS, however the EP said that NCS or POTS do not actually exist, that it is a made-up " fashion - illness ". I should stop taking my BB and BP - the only reason my BP was fluctuating was due to me taking it so often! When I told him that I was not allowed to drive due to my frequent syncopal episodes he rolled his eyes, told me to go ahead and drive. He actually said: " My daughter had the same thing - I have no problem with her driving ". He than went on to say that high BP cannot be felt, that it is called the silent killer b/c we are not able to feel our BP. 

I had a Follow-uop with my regular cardiologist 5 days later and stopped the BB as directed by the EP - just to show him what happens. I was barely able to walk into his office. He apologized for his colleague and started me back on BB- in addition to midodrine. 

Another good one is : the very first cardiologist I saw for my frequent faints and tachycardia told me that there is nothing anyone can do, he told me that I will continue to pass out for the rest of my life and ordered compression stockings. 

And - seriously - a doctor asked me once if I smoke pot … because of POTS. He thought it was related!!!!!! What in the … ?

[aelizabeth3300]

Oh, I could go on and on about the dumb things my doctors have said/did to me. Before I was diagnosed, my first cardiologist did an EKG, gave me holter monitor, and scheduled me for an echo and a stress test in my first visit. She explained that due to my age, my symptoms didn't worry her (I was 18 at the time). While I was on the monitor, I ended up in the ER with very bad symptoms. I was there laying down on the bed, chilling on my phone, and my HR spiked to 200 in a matter of seconds and stubbornly refused to come down.  The ER doctors prescribed me 25mg of Metoprolol (I weigh 80lbs with clothes on), and she agreed to the prescription. Well, obviously I was having severe side effects on it considering how high of a dose that was, and when I called her about it the only thing she said was, "I didn't prescribe this so she can come off of it." Uhhhhh? You're a cardiologist recommending me to suddenly stop a beta blocker? After I was in the ER with a HR of 200? You want me to stop medication? 

When I went back, we did the stress test and the echo. While hooked up to the stress test monitor, I stood up off the table and my HR increased from 90 to 130, and she told me to relax. She then said, "Someone your age can handle higher heart rates. Your heart is stronger. I believe it's just anxiety. We'll review the monitor results when they come back, but I think there's nothing to worry about."

I never went back. Immediately got a second opinion. He spoke to me for 5 minutes, did no tests, and gave me the dysautonomia preliminary diagnosis. Confirmed it with an ANS test. Prescribed me a low dose of Propranolol, and told me all the lifestyle changes and whatnot. 

I've never struggled with anxiety (until these symptoms started), but even so I know what it feels like to be anxious and have a panic attack. Not to mention, panic attacks usually only increase the HR to about 160 max and mine was 200. 

After all that, they discovered an AV block on my monitor, so I was referred to an electrophysiologist. I've been struggling with him for two whole months now. I can't be on a beta blocker and he wanted me to try ivabradine (corlanor), but since it's only approved for heart failure in the US, he has to convince my insurance company to cover it. He's taking his sweeeeet old time to do that. Meanwhile, I can't be off medication or I get severe adrenaline storms, and have been taking beta blockers. Which make an AV block worse. SMH.

[bombsh3ll]

I just went to the only autonomic unit in the UK for inpatient tests last month. The only outcome was that they confirmed the diagnosis of POTS (which I've had for nearly 5 years) and recommended "reconditioning" as the only treatment. 

This was from a middle aged, considerably overweight consultant whose only exercise probably constitutes the ward round. 

I may not be able to stand but I bet I could whoop his pot bellied a** on my recumbent bike any day of the week!

Unfortunately I got my results by letter or I would have told him that.

B xxx

[Peter Charlton]

"Just harmless ectopics" was one of the GP's response to the ECG I showed him that a cardiologist later told me I should ring an ambulance when ever I got them. (VT). This was the same GP who told me my dislocated shoulder was "old age" pain, without even looking at it, and whilst I was aged around 45.

Another GP said, "Whats brain fog"?

Best though was the cardiologist who in response to my accusation that the beta blocker Sotalol had given me a persistent cough said, "Ive been a cardiologist for 15 years, its nothing to do with beta blockers, pure coincidence you got the cough at the same time, maybe you've got lung cancer".

(Here is a link showing coughing to be a side effect of Sotalol).    https://www.ehealthme.com/ds/sotalol-hydrochloride/coughing/ 

[Spiders from Mars]

Still struggling to get a diagnosis of hyperPOTS at this point, but these are my favorites so far:

- After 2 months of visits to the cardiologist following a severe syncopal episode landing me in the ER, he looks at me and says, “well, I don’t think you have POTS. I’ve seen people with heart rates from 40 to 150, sustained.” And then, “things like this often go away with age.”

My heart rate DOES range from 50s to 150, stays elevated, and he obviously is ignorant of the criteria of 30bpm or >120bpm. Also, I’m 34 and it’s worsened with cardiac symptoms so yeaaa, not gonna go away dude. He never even checked my pulse after standing. Did put me on .2mg of fludro, which I later found out he thought had only been .1mg, and gave me severe edema and worsened cardiac symptoms.

- GP, same story after nearly a year of visits and developing tremor episodes says to me, all in the same visit:

>> “Maybe this is just how your body is now.” <<

”It’s probably low blood sugar, you should eat more protein.” (Told her it didn’t feel like low blood sugar, but like adrenaline and even after I eat, but sure.)

”It could be stress.” (From being house-bound without a diagnoses or a doctor who cares? Well then, yes.)

“You should make an appointment with a psychiatrist.” (Ditto.)

They’ve both also rolled their eyes and chastised me for taking my pulse rate, so I didn’t dare tell them I also take my blood pressure. Gasp!

So here I am, still without a TTT and a new EP who thinks I MAY have POTS. 

[StayAtHomeMom]

1 hour ago, Spiders from Mars said:

Still struggling to get a diagnosis of hyperPOTS at this point, but these are my favorites so far:

- After 2 months of visits to the cardiologist following a severe syncopal episode landing me in the ER, he looks at me and says, “well, I don’t think you have POTS. I’ve seen people with heart rates from 40 to 150, sustained.” And then, “things like this often go away with age.”

My heart rate DOES range from 50s to 150, stays elevated, and he obviously is ignorant of the criteria of 30bpm or >120bpm. Also, I’m 34 and it’s worsened with cardiac symptoms so yeaaa, not gonna go away dude. He never even checked my pulse after standing. Did put me on .2mg of fludro, which I later found out he thought had only been .1mg, and gave me severe edema and worsened cardiac symptoms.

- GP, same story after nearly a year of visits and developing tremor episodes says to me, all in the same visit:

>> “Maybe this is just how your body is now.” <<

”It’s probably low blood sugar, you should eat more protein.” (Told her it didn’t feel like low blood sugar, but like adrenaline and even after I eat, but sure.)

”It could be stress.” (From being house-bound without a diagnoses or a doctor who cares? Well then, yes.)

“You should make an appointment with a psychiatrist.” (Ditto.)

They’ve both also rolled their eyes and chastised me for taking my pulse rate, so I didn’t dare tell them I also take my blood pressure. Gasp!

So here I am, still without a TTT and a new EP who thinks I MAY have POTS. 

That TTT is what you need. I had the same run around. Do a poor man's tilt table and record the data over a period of time and bring it in with you. Then request a TTT to make it official. 

[Spiders from Mars]

@StayAtHomeMom Thank you, that’s a great idea! I’ve already got plenty of data. My neuro also said he loves to give them too, so I can go back to him if the EP won’t budge. It’s ridiculous to me to be so eager to pass out just to prove everything. I’ve done 3 holters, EP wants a fourth and I want to scream.  

This forum (which I’ve been lurking around for a while) is seriously saving my sanity.

[StayAtHomeMom]

1 hour ago, Spiders from Mars said:

@StayAtHomeMom Thank you, that’s a great idea! I’ve already got plenty of data. My neuro also said he loves to give them too, so I can go back to him if the EP won’t budge. It’s ridiculous to me to be so eager to pass out just to prove everything. I’ve done 3 holters, EP wants a fourth and I want to scream.  

This forum (which I’ve been lurking around for a while) is seriously saving my sanity.

Depending on the neurologist, they can diagnosis you. My specialist is a neurologist. He specializes in POTS though. He has most of the autonomic testing in his office. It is kind of nice. 

[Pistol]

16 hours ago, StayAtHomeMom said:

“You should make an appointment with a psychiatrist.” (Ditto.)

That one is my favorite!!!!! -- @Spiders from Mars I agree - you need a TTT. A neurologist can order one but it will be performed by a cardiologist. Also - if the EP refuses the TTT I would request a second opinion, even from the same facility if necessary. According to current recommendations a TTT - although not the golden standard - is the most helpful tool in the diagnosis of POTS, NCS and OH. Tell the EP to get informed before he orders another halter. BTW I had many, many halters including an implanted loop recorder that monitored every beat for 3 years and all it ever showed was tachycardia and PVC's, and this was including during syncopal episodes. But both my TTT's were positive for NCS and POTS. 

[DizzyGirls]

My youngest daughter had been falling a lot, but only in the evening.  She got to where she was falling 20-30 times a day.  Legs would stiffen and become uncoordinated, then she just started falling.  Went to Autonomic Neurology PA who said, "oh, she falls so gracefully!  She'll not hurt herself (as she's falling down the hallway)!  It's psychogenic, just need some cognitive behavioral therapy and she'll be just fine."  Turns out she has Dopa Responsive Dystonia of which 10 minutes into her second dose of Sinemet and she could have strutted down a runway!  Of those who have EDS, 75% who have dystonia have Dopa Responsive.  She would have known that if she would have kept up with EDS. 

Oldest daughter went to ER recently due to what we thought were seizures (after seeing Epilepsy doc yesterday, thinks it might be complex issues with her POTS).  They did an EEG, let her tremor and convulse for at least an hour.  Doc says, "This looks just like anxiety!"  I looked at her and said "we've got a long way to go before you get to label this anxiety! You've let her tremor and convulse for over an hour, yes, she might be feeling some anxiety about now!  Wouldn't you!!!"

The list goes on....

[Guest ANCY]

A few highlights...

Hematology, after i passed out in front of him, well, you REALLY have POTS. As if people can't have POTS if they don't pass out?

A New Surgeon's reaction after I pass out is to tell me he ran out in the hall with his hands in the air screaming for help! Of course that's not what he did, he was just lightening the mood. My sister was with me so there was no cause for alarm. 

Not really a statement, but, too funny. So went on a trip from Colorado to Ohio to visit family and ended up going to the ER because I needed blood. I have a habit of sitting on my legs and am a full time wheelchair user. As a small town hospital, With everything I had going on, they were rather flustered. During the intake the nurse AND the dr charted that I was an amputee. So dr leaves and comes back in and does a double take because I had switched left to right but he still didn't say anything about it.  Then the nurse was cleaning up trash from accessing my port and accidently grabbed my skirt in the process, GASP, "you have a leg!!" Then proceeds to tell me they both charted it as amputated. Moral of the story, don't sit on your legs when going to a new hospital lol! Needless to say, the dr couldn't keep a straight face after that. 

A cardiologist solution when I told him I couldn't do the exercise program because of a bad c diff infection, "stick a cork in it" ??? Umh, no, exactly what you shouldn't do! 

Different cardiologist released me from the hospital when I was having bradycardia and was sitting in the 40s primarily. He says, "come back if it gets worse" our response, "worse, like, dead???" Then he told us to come in if I'm passing out longer, which I already was... Ended up coming back when I was 20s-30s and getting the pacemaker. 

You really do have to laugh at things, although often times it's not funny while it's happening. 

[katyroq]

"Drink some Gatorade every day and hope that you're one of the young people who grows out of POTS." 

-Cardiologist 1

I was 29 at the time, definitely not a "teen onset" case. But I do look young! 

I'm grateful not to have as bad stories as many of you, but I did find this advice funny. (for the record this dr. was extremely competent and I now know that he suspected pots just from listening to my heart lying down and sitting up, immediately ordered a TTT, etc). Unfortunately when it came to treatment he wasn't as helpful. 

Currently 3 years later, I am doing well under the care of another cardiologist. Medication, exercise, and increased sodium have all helped. Turns out there was a LOT that could be done and even though I have by no means "outgrown" my POTS, I'm managing symptoms quite well and living my life much more fully than I was. 

ETA: my current cardiologist says funny things too, but mainly because he's at a teaching hospital and he's always showing me and my weird symptoms off to the trainees and nurses. He always has me do a poor man's TTT and one day the nurse was super confused why he would want to take HR and BP after standing 3 minutes. She was thoroughly shocked at how high my hr went and then I heard him congratulating her on her first POTS test. It honestly makes me feel better about having a "weird" health condition when he makes it seem special for the students to get to learn about it.