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Undiagnosed Episodes of Passing Out

I am an 18 year old girl who has been experiencing 2 strange episodes since I was 12. I am 5’3” and 108 lbs. I have been mostly healthy throughout my life. My medical history includes being diagnosed with PFAPA at the age of 5 and receiving a tonsillectomy which slowly improved my condition over time. I still experience symptoms of occasional auditory and tactile hallucinations, disorientation, and sight sensory overload that are heightened mainly when I have a fever, but also happen randomly occasionally. Because of this we believe I may have been misdiagnosed and actually have HYper-IgD Syndrome, but this has not been confirmed as of right now. I was diagnosed with VCD around the age of 14 which bothered me mainly when exercising. I received speech and breathing therapy for it and my condition improved. I was diagnosed with scoliosis and scapular dyskinesis around the age of 15 and received PT treatment for a year until Covid hit. I had an oxolate based kidney stone at the age of 16 and was diagnosed with hypercalciuria.

In the first type of episode, I get about a 5-10 second warning of dizziness, blackened vision, and disorientation before I pass out (on the ground, eyes closed, non-responsive). These episodes last around 2-4 minutes before I wake up and begin responding again. I remember what happens prior to passing out and afterwards. We haven’t found any possible triggers for the episodes. These episodes happen roughly every 3-4 months. My doctors believe these may just be what they’re calling traditional syncopes. I currently deal with depression and anxiety which was diagnosed at the age of 14

In the second type of episode, I do not get any warning. I slowly fall to the floor and become unresponsive; however, my eyes are open and I can occasionally stay sitting upright during the episode. They last around 3-5 minutes before I start looking around, answering questions, and moving. I do not remember what happens leading up to, furring, or after the episode. I’m only able to describe what happens based on what my mom or others around me observe when it happens. I have had these episodes happen sometimes in moments of distress and when I have fevers (although it doesn’t happen every time in these situations). Most of the time they happen randomly without any known trigger. These episodes happen roughly every 2-3 months. My doctors don’t know what to think of these types of episodes.

I have seen a cardiologist and neurologist for these episodes. The cardiologist ran an EKG which came back normal. A 48 hour holter monitor showed min 52 bpm, max 150 bpm, average 87 bpm. The only concern was 5 ventricular ectopic beats which occurred while I was sleeping. Further testing included an ECHO which came back normal. I am currently wearing a 30 day holter monitor to possibly track an episode or more unusual events. The neurologist is sending me to get an EEG and MRI of my brain but does not want to do any further testing until the cardiologist rules out any other possibilities.

We are kind of stuck at this point and I would really appreciate any possible advice on steps to take or possible diagnosis’s to look into. Thank you!
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Avatar universal
Hello! Here are my thoughts of all this:
1) First type of syncopes sound to me like orthostatic (blood vessel related) syncopes. Easiest and fastest way to diagnose it is to lay down, get your blood pressure measured after 10 minutes laying down, then (and only in presence of someone ready to catch you if you fall) you have to get up as fast as you can and measure your blood pressure again. It should be lower. And then measure your blood pressure some more times till it normalizes. This should indicate an orthostatic issue, if present, or even cause a syncope. ECG and Echocardiography are good methods to rule out any heart associated causes of syncope. So am sure your cardiologist is on the right track. A 24 hour blood pressure measurement could be also added to the list of tests. That could even reveal some hormone-dysregulation caused syncopes, if present.
2) the second type of syncopes, sound more to me like the ones caused by problems with the central nervous system (e.g. epileptoform syncopes). Those can be symptomatic (caused because of... fever, stress, psychosis, medication, tumor, malformations or old head injuries (also neuro-infections)...) or primary (caused by malfunction of central nervous system- the real epileptic syncopes and lighter forms). So your neurologist is on the right track too, I think. Because the MRI could rule out many symptomatic syncopes and EEG can rule out the primary causes (though they can not always be seen during the measurement, so it has to be repeated or some provocation tests have to be done, like stroboscopic light, sound, breathing tests etc. depends on doc).
My suggestions for now: be patient, let them do their brainstorming, dont drive a car by yourself, dont use potentially dangerous appliances, be always surrounded by good, reliable people. Wish you getting well soon! ;)
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