SuchGreatHeight

Okay, this may get long and complicated so I'll try to simplfy as much as I can.

At age 17 I started to have dizzy and fainting episodes when standing too long, standing with my hands over my head, and while moving too fast (never occurs while sitting or laying). These episodes consisted of extreme dizziness, nausea, weakness in limbs, agnosia (no eyesight), my head will feel cold, and my body will feel hot, and then I will faint. After a thousand PET's, CAT's, MRI's, EKG's, Urine samples and blood tests, and after all those came back normal, they made me do a "Tilt Table Test". Basically, you stand until you faint while an EKG takes the results. If your heart stops when you faint, you fail, if your heart is regular you pass. Well finally, I failed at a test, the TTT, when my heart stopped for four seconds, and I was then diagnosed with "Chronic Neurocardiogenic Syncope" aka Vasovagal. No meds, no cure, just when an episode occurs, I simply sit down and my symptoms will resolve.

A year later, at age 18, I began to have similar episdes, but this time symptoms were caused by being woken up too fast from sleep, "before im (my mind or body is) ready". After being awaken I would feel fine for the first hour, but after that I then started to have similar syncope symptoms. But, these episodes had the symptom of extreme tiredness and fatigue (main symptom, I would fall asleep even while walking), very poor balance and motor coordination, weekness in legs (I can barely walk or hold myself up), extreme dizziness, nausea in the beginning for a period of time, agnosia when walking/standing and dissociation. These episodes however, unlike the NC syncope, could be resolved by simply going back to sleep.

Please note, that during of one of my largest episodes, I was in the ER and had my sugar taken (normal), blood pressure (normal) and an EKG (normal).

I was then sent to a Neurologist and had another MRI, an EEG and an ENG. The MRI came back normal, and refused the diagnosis of MS (my primary care doctor suggested Multiple Sclorosis), all the doctor said about the EEG is that, "well...umm. It wasn't neccessarily ABNORMAL." By this time, I hated this Neurologist, he never once sat down and talked to me and had the nurses do the tests, and it didn't make me like him any more when he chalked up everything to a new diagnosis: Vertigo.

A couple months later, I am now 19, a different episde appears. Like the second episode, it's related to sleep, but this time it has no syncope symptoms. This episode merely consists of me being in a normal mood, normal state of mind, normal energy level, but then (usually in the middle of the day, early to late afternoon-ish) I would suddenly feel an extreme amount of tiredness and fatigue, and then just fall asleep. I have suddenly fallen asleep in the back of the car (many times), in the middle of the street (where I passed out on a bench i tripped over), and even once while driving (i swirved, but there was no accidents because I pulled the car over). When I fall asleep, I do not wake easily, it takes several people and minutes (average 15 minutes) to wake me up. And when other people wake me up, episode number 2 (aka the "Vertigo") would occur. Although, after an hour to three hours and woken on my own, it is as if nothing happened. I was not groggy nor tired, and just as energized as I was before I fell asleep.

Some notice: All these episodes occur after a good 10-12 hours sleep. Ever since I was 2 days old, I was an extensive hypersomniac (slept 12-16 hours a day, naturally).

More notice: I have ADHD, and take the med Provigil. And for some facts, Provigil is only FDA approved for Narcolepsy, and is suppossed to give me extra boosts of energy throughout the day.

So I ask you...any ideas? Any tests or disorders or certain doctors I need that you can think of? Anything at all?

Both my psychiatrist, therapist and cardiologist have been stumped, as has my neurologist.

I have Thallesemia (Iron Deficiency Anemia) and that was excluded, I take four meds and all were excluded, none caused any episodes.

Dire need of info. Any.


SGH