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Bridam

Did My Cardio Lie??

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My primary care dr sent me to a cardio a while back for palpations.. Chest pain/ pressure.. Heart racing.. Every time I stand the room goes black ect.. ect.. So he did all the normal tests echo..EKG.. Stress test which I couldn't even finish.. He told me I was out of shape and I had severe anxiety.. I DO NOT have anxiety!! But I digress.. I went back to my pcp bcause I was getting worse.. He sent me to the same cardio for TTT..

I was sure I got a diagnosis bcause my heart rate was waaayyy up there and kept trying to pass out dizzy lightheaded all the symptoms x100.. My cardio told me it was nothing and I would grow out of it..

If didn't feel right to me so I ask for my test results and boy did that set off a chain of events.. He was obviously avoiding getting me my results.. I reported him to the hospital and still nothing..

After a while I finally got a paragraph emailed to me that said my heart rate never got over 100 and I had NOTHING.. I was absolutely fine.. I knew this was wrong bcause I heard the techs discussing how concerned they were about my hr..

I finally go and get my "raw data" and it blew my mind.. Although if may be just a mild case of POTS bcause my hr went up 33 bpm in the first 10 minutes but after that it climbed all the way to 188 and I was so extremely sick.. He never mentions this in his report..

Is this all in my head or do I keep pushing for a dx

Thank yo hall in advance for your input

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In my opinion, you need to ask your PCP for a referral to someone who is more knowledgeable about dysautonomia. I had a very similar experience with a cardiologist and I called my PCP, made my complaint about the cardio, and then said, "If your daughter or wife were having the issues that I am having, which cardio would you want them to see?" That produced a totally different name of someone who cares about her patients and is thorough. She also isn't a POTS expert and gladly shared my care with the local expert once she made the diagnosis. The reason I was given the 1st cardiologist ' s name is because my PCP works in one of those giant practices that has a bunch of primaries and also a bunch of specialists. Technically, they are supposed to refer within their group first (by their office rules.) Once I got my official diagnosis, I also called the Medical Director of the group and filed a formal complaint against the 1st cardiologist and was able to back it up with proof from the 2nd doc.

I'm so sorry this happened to you but some docs are just not very good. But, they are not all like that so don't give up! You need to be your own best advocate. Have you taken a look on our physicians list to see if there is a dysautonomia specialist near you?

http://dinet.org/index.php/physician-list?view=physicians

If there isn't someone on the list, don't be discouraged. As I said, the cardio who diagnosed me wasn't an expert, she just cares enough about her patients to not give up without a fight.

Katie

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Katie is right on the money.

It can be hard to find a doctor who knows dysautonomia. I've fired 2 cardiologists and one neurologist. I didn't want to continue treatment with people who couldn't say, "I don't know?" No one is omnipotent.

You are your own best advocate. You've got the raw data. Keep it, and get your pcp's opinion on a new doctor. I had my tilt table with a Electrophysiologist. Not a cardiologist. And the ordering physician was a neurologist. Don't feel pinned in to just one type of doctor. It doesn't matter what their title is, along as they serve your needs and support you.

I know it can be hard to gird your loins for another round of finding the right doctor roulette. But you are totally worth it.

Gotta scoot to PT.

-K

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It is sooooooo frustrating when a MD does not take you seriously - I can't stand someone telling me "it's all in your head" - "You're Fine" - "go on and live your life - you are perfectly normal" - All of which I have heard from various "specialists". Just keep on until you find a physician who really listens and is willing to dig to find answers. Unfortunately, this can take some time however, you will find the right physician eventually.

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You know your body best. If you sense that you are being lied to or shoved off, you likely are. Some people do get better in time and others don't so "youll grow out of this" is not a complete answer. It also does not help you in the mean time. I always get my full reports.

When in doubt, get a blood pressure machine that also takes a heart rate and do your own poor mans tilt test. Do it every day and record laying, and standing. Remain laying for 10 min and already be set up with cuff on and ready to record. When standing take your vitals on a regular interval up to and past 10 min. just for good measure. I do this in my bed room where if I fall, I am facing my bed and have a support behind me. Also don't actively squeeze your muscles like you usually do in an attempt to regulate. Just stand softly and try not to over compensate in any manner that you would not be doing if you were laying down. ex. I have a hard time not excessively breathing when I first stand as a compensatory measure to get oxygen to my brain. When you get a few weeks worth of data, then bring it in.

When you do these kinds of things, people don't actively pass you over or tell you half truths. You are your best advocate and you have to act like one rather than a patient. It will pay off way sooner than later. I wish I knew this when I was younger.

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I forgot to say to take your bp and hr after laying for 10 min. then stand up and do it 3 times over 10 min. It is also best to do it when you have someone there to spot you. When I said to stand soft that means don't lock out your knees or squeeze. As soon as you lock out your knees, you engage muscles. just let them be with a bit of slack without engaging your thighs anymore than needed to stay upright.

Another note is that some machines do a 3 in a row test. That's ok but then you have to wait longer for your arm to recover. Taking your measurements should be spread out a bit. So. I do a 3 in a row to get a good base line of laying and standing to make sure Im looking at ballpark accurate results then proceed with one reading per interval when doing my test. If you put the cuff on upside down you will get subpar results.

Then take your info to your drs office and have them repeat it. I had virtually no difference in readings when doing it at home and in the drs office. Of course, things will vary slightly from day to day or if you had some coffee. For some people the time of day matters some too.

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My first cardiologist told me I was out of shape and I needed to exercise more. Luckily, when I called back to make an appointment after another syncope episode, he had left the practice and they put me with the Electrophysiologist in the group. Was your cardiologist an EP? I would definately go to another doctor! Good luck!

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Hey, I agree with everyone else! Go see an EP. It sounds like that doctor did blatantly lie. Your pulse should not be 188 after 10 minutes of standing!

I'm not sure that reporting him to the hospital will yield much because they have a self-interest in protecting from lawsuits and doctors are never supposed to admit fault, apologize, etc. You could pursue malpractice or file a claim with your state's ethics board, but, I would be very careful because that sort of thing may make future doctors very wary of treating you.

Just fyi, I was diagnosed by my PCP doing a poor man's tilt in his office. Though it may be of interest to future physicians, I don't think a TTT is necessary for diagnosis and treatment. I later saw a cardiologist with an interest in POTS, and my poor man's tilt seemed to be sufficient as in he didn't request a tilt. Just passing this along in case you want to pursue a diagnosis but don't want to go through a tilt again.

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Yeah don't bother going after the doctor. He/she just doesn't know about POTS, it's not a very well known condition. Find a doctor that can help you and try to figure out what's wrong. That is a much better use of time.

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