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16 year old daughter
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16 year old daughter

My 16 year olf daughter Brandy started having dizzy spells, tingling and numbness in her face, hands, arms, feet, legs and back on 9/13/98.Her BP dropped more than 30 points going from sitting to standing - diagnosed as orthostatic hypotension, put on Fluronef, no results. Diagnosed also with vasovagel syncope after passing out on the tilt table test in just 15 minutes. Put on ProAmatine 5mg x 3/day. Symptoms improved immediately but she became symptomatic between doses. Meds increased to 5 mg x 4/day. No symptoms for 6 months, then dizziness, numbness/tingling and now headaches started again - every now & then - no pattern. The frequency increased almost exponentially. Since last Tuesday, she's been dizzy nonstop.  MRI, EEG, EKG, ECHO, blood work done last year were all normal. One test with an electrode on her foot with electrical stimulus got no response - the clinicians administering the test thought it was unusual enough to change the wires and retake twice, but the neurologist said it was OK. A halter monitor showed her heart rate varying from 50 at night to many periods over 150 and one episode while sitting down at 190 - again we were told it was ok by her cardiologist. From what I've been told about both orthostatic hypotension an vasovagal syncope, neither should cause continuous dizziness - plus now headaches. She's to see her cardiologist Wednesday. He is a nice man but I wonder if I should look for another or should we be seeing a neuroligist? The cardiologist only sees patients on Wednesdays hence the month wait in getting her in. Could she be having something else altogether going on and not related to any of this? I feel "blown off" by this dr. since Brandy's condition isn't life threatening. Her pediatrician says she hasn't a clue, will refer her to where ever I want to take her to see if someone can figure out what's going on - she just thinks it should be a PEDIATRIC cardiologist since she's only 16. Brandy feels tired, her head hurts a lot, she's now dizzy continuosly. She had allergy shots for 4 years and just finished those up last March. She's had 2 shoulder surgeries for stretched tendons and ligaments and torn bicep tendon.Her left shoulder is currently dislocating in 2 locations. Certain movements cause the ball to come out of the socket and another causes the collar bone to dislocate at the AC joint. She's putting off that surgery as long as she can stand the pain - because this other is far more of a problem for her. The orthopaedic surgeon said she's extremely stretchy - could this possibly be a factor in the bp problem w/regards to the vessels not constricting? She still has frequent sinus infections - 1/month. A CT scan during this other mess showed a couple of small cysts in her sinus but we're told they don't need to come out at this point. She also has cysts under both arms that have come up in the last month, they are doing an ultra sound on those Wednesday to make sure exactly what they are. I know this is unrelated, I just wanted you to be aware of everything happening with her medically. Do you have any suggestions as to where we should turn? What tests would be in order next? She just wants to feel normal again! Thank you for your help.
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238668_tn?1232735930
Dear Lisa,

The medical term for fainting is syncope (or near syncope if one dosen't actually pass out).  This is a common but complex condition that has many causes.  The most common cause is the common faint (neurocardiogenic or vasovagal syncope).  This is the typical faint caused by strong emotional factors (i.e. the sight of blood) and is usually brief in duration.  The person almost never harms themselves and the precipitating factor can usually be identified.  More serious forms of syncope are due to cardiac and neurologic causes.  

Syncope due to bradyarrhythmias (slow heart rate) or tachyarrhythmias (fast heart rates) are often hard to document.  Holter monitors will only reveal the source if they are being worn during an event.  "Event monitors" are devices that can be worn for months at a time and when an event occurs a button is pressed that saves the heart rhythm for the last 5 minutes.  This can then be sent to the doctor over the telephone for a diagnosis.  Other less common cardiac causes are carotid sinus irritability which is due to an abnormal structure in the neck that results in syncope when pressed upon.

Neurologic forms of syncope include autonomic nervous system diseases and seizure disorders.  These are diagnosed with tilt table testing and seizures with an EEG.  Tilt table testing is a simple test that is pretty much what it sounds like.  The patient is placed on a table and ECG and blood pressure monitoring are attached.  The table is then tilted upright so the person is in a vertical position and the heart rate and blood pressure are monitored.  People with certain types of syncope are more likely to have symptoms during this test.  The entire test lasts about a half hour.

Medications can sometimes be used for treatment of the "common faint".  A beta-blocker is the most typical medication used. Other treatments that may be recommended include liberalizing  salt intake, compression stockings and elevating the head of the bed with blocks 6 inches.  Finally, slowing rising and "bouncing" on one's toes when a faint feeling comes helps return blood circulation to the head.

As you can see the diagnosis is somewhat complex. Therefore, I would recommend that you see a specialist in the area of syncope.  Two doctors that specialize in this area here are Dr. Fred Jaeger and Dr. Fetnat Fouad.  You can make an appointment with either of them by calling the number below.  Good luck.
8 Comments
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Lisa, if you are not completely comfortable with yhe dr's you are using...by all means find one!!!! I would highly recommend Dr. Ronald Laurer professor and chief of the department of pediatric cardiology at the University of Iowa Hospitals and Clinics located in Iowa City Iowa. If that is to far consider finding a female cardiologist near you. good luck
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238668_tn?1232735930
Even better would be a specialist in syncope.
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The tests you mentioned, she's already had. She passed out in 15 minutes w/out medication on the tilt table test. Her BP bottomed out at 50/24 and her heart rate dropped by 1/2. Should we be looking for a new cardiologist or neurologist? Does a syncope specialist fall under one or the other? Should we assume there's something in addition to the ORTHOSTATIC HYPOTENSION and VASOVAGAL SYNCOPE going on since she's been continuously dizzy since lunchtime Tuesday plus having headaches? The cardiologist called hers vasovagal syncope but you described it as neuological. (She certainly doesn't get faint w/blood, in fact she job shadowed numerous O.R. jobs this past year and loved every minute of it.) The drop in heart rate and bp would substantiate that right? Also, should I be looking for a pediatric "whatever" given her age or does it even matter?
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Avatar_n_tn
Some very interesting information can be found on the website for the National Dysautonomia Research Foundation (www.ndrf.org). An episode of Dateline which aired last week was about dysautonomia, which the physician here mentions. You may want to check it out, simply for information. It is fascinating.
There seems to be so much happening to our kids these days. Good luck to you and your daughter. My son suffers from dysautonomia of yet unknown cause, and his blood pressure and heart rate are now very low while lying down, then raise to normal and then to very high when upright. However, he never has any lightheadedness, dizziness, etc. He was very hypertensive for over a year, and now it's just the opposite the majority of the time. These situations seem to take a long time to figure out, and it's frustrating for parents as well as the child. I understand what you and your daughter are going through; my son is 15 and has been taking out of the athletics, which are his world (football, basketball, baseball, weight training) while we have been trying to figure out the source of his problem for a year. You are in my thoughts.
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Avatar_n_tn
Check out the Ehlers Danlos syndrome or Joint hypermobility sites.  Simple search will get information.  Also "hypermobility syndrome".  There is an EDS mailing list you can get to from the EDS homepage.  Many people have commented on low blood pressure with EDS or hypermobility syndromes not to mention the stresses of living with joints that dislocate easily.
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238668_tn?1232735930
Thanks for your comments Kathy.  Lisa - a syncope specialist may be either a cardiologist or a neruologist.  I think finding a "pediatric" ... is less important than finding a syncope specialist.  I think the ndrf website has a listing of doctors who specialise in these disorders otherwise you will have to rely on your doctors recomendations.
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I WAS DIAGNOSED WITH VASOVAGAL SYNCOPE ABOUT 12 MONTHS AGO SINCE THEN I HAVE BEEN ON ATENOLOL 50MG NAD 100MG I FOUND NO IMPROVEMENT WITH THESE DRUGS AND I ALSO HAD SIDE EFFECTS SUCH AS COLD FEET AND HANDS AND BEING EXTREMELY TIRED.
I AM ONLY 15 YEARS OLD AND I FIND THAT VASOVAGAL SYNCOPE EFFECTS MY EVERYDAY LIFE WHEN I EXCERCISE I PASS OUT I HAD A POSITIVE TEST TO THE TILT TABLE TEST.
I HAVE HEARD ABOUT TREATING THIS DISORDER WITH A PACEMAKER
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