SuchGreatHeight
05-22-2007, 04:02 AM
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
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
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mkgbrook
05-23-2007, 12:44 AM
Add a ABSM (American Board of Sleep Medicine) certified sleep specialist (neurologist or cardiologist sub specialty would be best for you) to the list of MD's you are seeing.. it sounds like something is causing epilepsy of narcoleptic fits. It could be medication conflict.. there is no telling. I would serious consult a sleep specialist just to be sure.. they might find something the others have missed.
I wish you the best.
Sincerely,
MG
I wish you the best.
Sincerely,
MG
SuchGreatHeight
05-23-2007, 03:41 AM
Thank you MG,
An ABSM? A certified sleep specialtist? A sleep clinic just occured to me a few days ago when my father went in for sleep apnea. I really appreciate the advice. I never even heard of an ABSM (neurological or cardiolgical type). Thank you :)
It's odd you mention Epilepsy with Narcoleptic fits. With my "Vertigo" and other non-related sleep episodes I have had, both have characteristics of a Complex or most often a Simple Partial Seizure. I read about Narcolepsy and don't neccessarily fit the prototype. But I do have a lot of the symptoms, I just recieve a warning before I fall asleep, as well as my fits last longer than the average Narcoleptic.
Again, thank you, thank you, for the advice. I will talk to my Primary Care Doctor and my Cardiologist about this and either get a refferral or different tests.
SGH
An ABSM? A certified sleep specialtist? A sleep clinic just occured to me a few days ago when my father went in for sleep apnea. I really appreciate the advice. I never even heard of an ABSM (neurological or cardiolgical type). Thank you :)
It's odd you mention Epilepsy with Narcoleptic fits. With my "Vertigo" and other non-related sleep episodes I have had, both have characteristics of a Complex or most often a Simple Partial Seizure. I read about Narcolepsy and don't neccessarily fit the prototype. But I do have a lot of the symptoms, I just recieve a warning before I fall asleep, as well as my fits last longer than the average Narcoleptic.
Again, thank you, thank you, for the advice. I will talk to my Primary Care Doctor and my Cardiologist about this and either get a refferral or different tests.
SGH
mkgbrook
05-23-2007, 11:35 AM
Your welcome.. it took 31 years to get my severe sleep apnea diagnosed and treated.. then I was able to get my whole family on board (husband, parents, brother, father-in-law, grandfathers, and son) Well all had it. Its hereditary and has many side effects. If your father has a disorder you may as well and any siblings that you have..
Best of luck.
MG
Best of luck.
MG
SuchGreatHeight
05-24-2007, 02:35 AM
Thank you.
You mention that it's hereditary. My grandmther had Sleep Apnea, but only because she was born with one lung and had to be on oxygen 24/7. And I have an uncle on my fathers side, and a grandfather on my mothers side with Sleep Apnea. But my dad, came back negetive. And my mom sleeps just fine.
There's something about sleep problems in my family. The sleep apnea, my mother's late nights but early mornings, my dads REM being too deep and sleeps hard, along with going to bed super early and waking up late, my brother having Night Terrors since the age of two, and Nightmare Disorder since the age of 15, his incredible insoomnia, and i even had insomnia problems when i was 15-17. I took ambien for a year before I realized it causes psychotic episodes. And then what I explain above? All very weird. Who knows what is going on!
SGH
You mention that it's hereditary. My grandmther had Sleep Apnea, but only because she was born with one lung and had to be on oxygen 24/7. And I have an uncle on my fathers side, and a grandfather on my mothers side with Sleep Apnea. But my dad, came back negetive. And my mom sleeps just fine.
There's something about sleep problems in my family. The sleep apnea, my mother's late nights but early mornings, my dads REM being too deep and sleeps hard, along with going to bed super early and waking up late, my brother having Night Terrors since the age of two, and Nightmare Disorder since the age of 15, his incredible insoomnia, and i even had insomnia problems when i was 15-17. I took ambien for a year before I realized it causes psychotic episodes. And then what I explain above? All very weird. Who knows what is going on!
SGH
mkgbrook
05-24-2007, 11:38 AM
The ABSM doctors will be versed in over 80 know sleep disorders they will be best able to diagnosis and help you treat your disorders. Some things can be cured easily with one of many positive air pressure machines ithers require different treatment. I can not tell you what is wrong, but it does seem like you need to see a credible sleep specialist.
Sincerely,
MG
Sincerely,
MG
chewbug
10-29-2007, 06:28 AM
Thank you.
You mention that it's hereditary. My grandmther had Sleep Apnea, but only because she was born with one lung and had to be on oxygen 24/7. And I have an uncle on my fathers side, and a grandfather on my mothers side with Sleep Apnea. But my dad, came back negetive. And my mom sleeps just fine.
There's something about sleep problems in my family. The sleep apnea, my mother's late nights but early mornings, my dads REM being too deep and sleeps hard, along with going to bed super early and waking up late, my brother having Night Terrors since the age of two, and Nightmare Disorder since the age of 15, his incredible insoomnia, and i even had insomnia problems when i was 15-17. I took *****n for a year before I realized it causes psychotic episodes. And then what I explain above? All very weird. Who knows what is going on!
SGH
This does sound as if it could be Narcolepsy. Also, have you been tested for ALS?
You mention that it's hereditary. My grandmther had Sleep Apnea, but only because she was born with one lung and had to be on oxygen 24/7. And I have an uncle on my fathers side, and a grandfather on my mothers side with Sleep Apnea. But my dad, came back negetive. And my mom sleeps just fine.
There's something about sleep problems in my family. The sleep apnea, my mother's late nights but early mornings, my dads REM being too deep and sleeps hard, along with going to bed super early and waking up late, my brother having Night Terrors since the age of two, and Nightmare Disorder since the age of 15, his incredible insoomnia, and i even had insomnia problems when i was 15-17. I took *****n for a year before I realized it causes psychotic episodes. And then what I explain above? All very weird. Who knows what is going on!
SGH
This does sound as if it could be Narcolepsy. Also, have you been tested for ALS?