PFO, Bradycardia and Lightheaded

[Ohio Mom]

Approximately 2 ½ years ago, at the age of 15, my daughter experienced a severe attack of upper left abdominal pain with nausea, shortness of breath and lightheadedness at basketball practice. She had a lot of pain and nausea the next day and felt like she was going to faint.  Her blood pressure was really low so I took her to the pediatrician (should have taken her to the ER). The pediatrician examined her, did some blood work and scheduled a follow up visit.  The nausea and pain got better gradually over two weeks but the dizziness never improved.  She would see black when rising in the morning and felt lightheaded when standing, pretty much all the time.  She was referred to a pediatric cardiologist.

She had a positive tilt table test (.03 mg nitroglycerin) in April 2006, and given a diagnosis of Neurocardiogenic Syncope. (She left the test with a numb arm and upper lip).  She was prescribed .1mg Florinef, the first dose caused a severe migraine headache, so Inderal was added.  She was instructed to increase fluids and salt.  She eventually started feeling better.

She has had an EKG at each cardio visit for the past two years indicating bradycardia with sinus arrhythmia (as low as 38), early transition, qrs positive in V2.  She is an athlete (basketball and softball) but not a long distance runner and to the best of my knowledge this low heart rate didn’t exist prior to the painful event at basketball.  Her echocardiogram in March 2006 found a PFO with a left to right shunt. She had another echo in April 2007 with a bubble study after I expressed concerns over two episodes of garbled speech, one of those with loss of vision in one eye, and occasional numb cold arms, nausea and chest pain while exercising.  The bubble study was positive for a right to left shunt (lots of bubbles with no coughing or straining).  The cardiologist ordered an MRI of her brain and it was normal.  

In November 2006 the cardiologist weaned her gradually from her medication, first the Florinef and then the Inderal.  She did fairly well with occasional lightheadedness until March of 2007 at which time she became lightheaded when standing and became very weak to the point that she could no longer participate in her softball games.  She resumed the medication and eventually improved.  Her cardiologist made another attempt at weaning her off the medication in October 2007.  Once again, the lightheadedness returned and she resumed the Florinef with 25mg of Atenolol. Over the 2+ years she has had occasional episodes of chest pain, numb arms and severe abdominal pain during exercise and more recently shortness of breath after a basketball game.  

I’m grateful that the medication helps to make her feel better and allows her to resume her activities but I can’t help but wonder if we are on the right track with the Neurocardiogenic Sycope diagnosis.  Here are my concerns:  1) why the sudden and dramatic change in health from an attack of upper left abdominal pain  2) She’s not occasionally dizzy like a kid standing too long on stage - without medication she “blacks out” every morning and is lightheaded pretty much every time she stands up  3) I’m concerned that the shunt puts her at higher risk for stroke and could overwork her heart and that the bradycardia/arrhythmia may not be just an athlete’s bradycardia (or the result of 25 mg of Atenolol).  4) One of the possible side effects of Florinef is compression fractures of the spine and she has already had 3 pars fractures of the 4th and 5th lumbar vertebra over the past four years.   5) She has a softball scholarship to a Division 1 university and will undergo a physical exam this summer and I’m a little nervous about their discovering that she has to take medication to get enough oxygen to her brain just to be able to stand upright.  

Her cardiologist feels that the shunts and bradycardia have nothing to do with her symptoms; her pediatrician says they are probably just “a red herring”.  My “mother’s intuition – gut feeling” is that the Neurocardiogenic Syncope diagnosis could be the “red herring”.  Could there be something else going on here?  

[Von2Von]

Hello,

Sorry to hear about all of the things the 15 year old had to go through.  I was wondering if any one has heard of what I am going through.  I have been having problems with my eyes and feeling light headed lately.  It usually happens when I stand up or bend down. When I get back up, I feel like my peripheral vision is somewhat closing in. (Sometimes flickering) I have a general feeling of just being light headed.  It last for a few minutes and then things seem better.  Have you heard of that before?

Von

[Ohio Mom]

Thanks for all the helpful information.

[Momto3]

There are 7 Heart forums on this website, 5 of them are "expert" forums and two are community forums.  The expert forums have physicians who will answer questions and the community forums are patients, caregivers, family members,etc

1)  Heart Disease Expert
2)  Heart Rhythm Expert
3)  Interventional Cardiology Expert
4)  Peripheral Artery Disease Expert
5)  Cardiovascular Disease Prevention Expert
6)  Heart Disease community (the one where you posted, but thought it was expert)
7)  Heart Rhythm community (this one)

You can get to the Expert forums or the Communities by clicking on "forums" (at the top of the page) or by looking on the right hand side of the page and choosing the forum you want to check out.  Not to worry, you're doing fine : )

An EP is an electrophysiologist (cardiologist with advanced training in arrythmia problems).

Oh, this will help too.......On the top right of the screen, under the "search MedHelp" box, you can click on "watch this discussion".  That way, you will be notified by email when there are new messages.  Just check your settings to be sure you have email notification turned on (it's under "My MedHelp" - the heart shaped icon on top).  Don't worry, it's not as hard as it seems.  

connie

[Ohio Mom]

Thanks for your support, I appreciate it.  Apparently I find this posting thing very confusing, I thought I finally got into "ask a doctor" and it appears I was just reposting in the community section.  Maybe I'll get the hang of this eventually but I appreciate your suggestions on that and will try some different time frames or other cardiology forums.

We are not too far from Cleveland.  What is an EP?

[Momto3]

I'm SO sorry you and your daughter have not been greeted with more professionalism and comfort....makes me so upset when I hear that patients are basically blown off.  GRRRR!!!!

There is a window of time that the expert forums accept questions, and it changes.  I've had luck in the past (years ago) around 7:00-9:00a.m. (EST), but I'm not sure those times still work.  The best advice I can give is for you to have your question ready (in WORD or somewhere similar) and when the forum is open, copy and paste the question and go for it.  I wish there was a set time so I could offer a better suggestion.  You can try posting to the doctors on the Interventional Cardiology forum or the doctor on Preventive....they sometimes can take more questions/day.  Don't give up - you have great questions!

Are you anywhere near Cleveland?  I have a fabulous EP in Cleveland if you'd want another opinion.

Hang in there.....
By the way, I don't understand the wait till she's 50 either........what's that about?  As you said, you're only asking about ONE.  I'd want much better explanations that you're getting and can certainly understand your frustration.

Connie

[Ohio Mom]

Thanks for your kind comments and suggestions.  My daughter's pediatric cardiologist said he will worry about closing the pfo when she is around 50 and is at risk for developing blood clots or before then if she has a confirmed stroke.  That seemed strange to me so I got the opinion of another cardiologist and when I asked him if he thought my daughter's health would improve if the pfo was closed he said....20% of the population have pfo's and we can't go around closing everyone's pfo, the health care system would go broke.  I wasn't asking him to consider closing 60 million, only one.  I walked into the hall as he was reviewing with a resident, my notes, which I have recorded word for word from my daughter's description of events, and I saw the roll of his eyes and a smirk that spoke louder than words....this woman's a nut.  He did an exercise stress test but couldn't be bothered to explain what he was looking for or the results.  He stuck his head in the door and said it's normal, take the medication and get lost, well maybe not that last part but that's the way he made us feel.  My pediatrician told me later that the stress test was not exactly normal because her heart rate failed to elevate to the expected level.  She had a word for it that I can't recall.  

I have tried to post on the ask a doctor heart forum but darn if I can figure out the timing on that.  It always comes up saying the maximum questions have been recieved for the day.  Have you had any success with that?

Thanks again,

Ohio Mom

[Momto3]

Hi Ohio Mom!  (I lived in Ohio for 47 years and love it there!)

Your daughter has a very interesting history.  As a mom it must be scary and frustrating not having ALL the answers.

I had a bubble study and MRI in April after a temporary loss of vision.  Initially, they thought I had a large PFO, but it turned out to be the jet from my leaky mitral valve. No sign of stroke on the MRI.  Anyway, when they thought it was PFO, there was talk of closing the hole.  Have they suggested closure in your daughter's case?

Also, you may want to stop over at the Dysautonomia Community - there may be others who can help with the NCS diagnosis.  They are familiar with POTS and similar conditions.

Connie
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