19 Year Old, With Big Aspirations and Huge health obstacles

Hi, My name is Sarah Jane and I'm a 19 year old full time college student. Over the last year, I have had to sit out on the side lines of life. I have had terrible problems with excessive daytime sleepiness, concentration, memory, insomnia, irritability, and sadly those are just the surface and less frightening problems.
I'll never forget the first time I had one of my "episodes" it was abut 8 months ago now. I was sitting in my bed reading when I all teh sudden felt disorientated and for the lack of a better word "sinking"....before I knew it I slumped over and felt paralyzed. My body felt numb and I was very limp. I was inwardly completely concious and as you can imagine panicked. This lasted for almost and hour and was the most frustrating and scary thing ever. I could open my eyes even though my eyelids were heavy and were told that my pupils were dialated past the point of telling the color of my eyes - also my pulse was very fast. My parents found me and no amount of massaging or ice could "wake" me up. At frist I wasn't able to find the energy nor muscle use to speak....I don't remember whether or not I could swallow. .....finally i was able to whisper and slowly wiggle my fingers and toes and work my way up my body until, wioth help, i could sit up, walk, and eventually bounce back although i was quite sluggish. there was no "only one side of my body" thing going on. Since then I have had about forty to sixty of these episodes and have sadly almost gotten used to them...i've had sometimes two a day and now have them only about once a week. my pupils have not failed to be dialated and my pulse is always fast. I've noticed now that although I feel sunken into and almost removed from my body I can wiggle my fingers and such if i concentrate real hard and there is definately a delay of the messge from my brain to my body part.

Now, yes, I know that this sounds like epilepsy, cetaplexy, or other things..but I've definately ruled these things out! we've also ruled out thyrod problems, neuro cardeogenic syncope aids, brain tumor, lyme disease, any heart problems, and other things.....
Since then I have developed ( some slowly some sudden) other symptoms which affect and frighten me even more! I am only nineteen, and the rest of my family and siblings are completely healthy.. for easier reading, I sm going to format my symptoms as a list....
there is one * beside milder symptoms...two *'s for worse...three for severe and so on...if anyone has ANY insight whatsoever please let me know...i'm ready to have my life back.

**concentration problems
*anxiety
*personality changes
*insomnia
*mild sleep apnea - i am only 5'5 and weigh 150 lbs...it is very mild though and CPAP doesn't help
** catatonic seizure like episodes
*syncope like collapsin (but i seem to mostly remain concious..I jsut collape
**frequent urination
**disorientation
*some vision problems - takes a second to focus and seems slightly blurry
*floating spots and sometimes slight peripheral yet nonexistant movement
** horrible brown scarring around simple cuts  and acne   - to the point where I can't wear dresses anymore
******very difficult time breathing...always yawming to get air..and very shortbreathed...kind of have to fight and constantly feel as if chest is heavy...this is constant and keeps me awake. i dojn't know if thsi is stress or muscle problems
***************supersuperbad leg muscle weakness and burning sensations when barely walking or standing...(burning as in muscle burning like when you are doing excercise reps and you feel the burn)
**********flucuating wobbliness and weakness of legs and soemtimes falling and getting off balanced
**********suspicion of muscle atrophy..I used to be able to leg press400 adn was called "the bull" for my strength...now i struggle to open doors, hold my weight up, open a can of peanut butter and carry a backpack
****for about a month i've had constant hand tremors..usually very fine but sometimes get really obvious..this is with medicine or without
****cognitive problems...often can't comprehend simple sentences of others - have always been a high IQ person
*******faitigue. i'm just drained of energy and always have to rest..not from being out of breath, but of feeling so so exhausted ..i used to run six miles a day and be very active
**melancholy
*motivation problems - i believe these are do to "self pity" from being so sick
**** so very very weak all the way around - esp legs
**can't hold my arms up for long for the burn
***********horrible muscle pain in neck, shoulders, and upper and sometimes lower back...keeps me awake...have been to a chiropracter and massage therapist...was told by the latter that i hvea terrible muscle knots and tension - so bad that they'll never completely go away. i can also move my shoulders and hear my muscle knots move around loudly..gross huh?
****my joints, back, adn neck pop adn crack alot..but aren't painful
****I have a bad excessive , rapid,and almost squint like blinking twitch. it is done unconciously and embarasses me. i also feel the need to pop my toes, back and neck alot.
***i get easily distracted
*****************my memory problems are very disabling. i can't remember faces names, short term and long tern. I have even had some scary memory laspses where I can't remember parts of my day usually even when told ...
*** i suffer to walk  up stairs, wait in line and such. there have even been instances where I have had to use a wheelchair.
*some headaches..and a couple of migranes (migraines)
**sensitiivity to heat..and soemtimes get rash (usually itchy) on legs agter shower..is faint and only skin color change differernt..is red and fleeting
*bruise easily - which i used to not
*some OCD tendencies - prob due to med
**night sweats - also possbile side effect
**some vivid dreaming
***loss of train of thought
***essily frustrated
*******ORTHOSTATIC HYPOSTENSION - MEDICALLY RECORDED get dizzy and vision fizzles blck upon standing and sitting up
**some loss of appetite
******horrible faitigue, weakness, and sleepiness
***did i mention i have a horrible tiem breathign?

[sarahjane240]

Ok, so there symptoms are understandably life changing....In an attempt to help ya'll see how desperate I am for answers and a solution, I want't ya'll to understand just how much I have going for me and need to get better so I can make a differnece in this world!!
I am a freelance photographer, writer,singer/song writer - reasonably successful,  and a music major. I have a strong passion for community service and peace missions and its sometiems all i wasnt to dedicate myself to. I have to get better by this summer so I can go to Israel and live in an orphan village and volunteer there. I just have to! I've always been so active socially and physically.(not meaning sexually)..i grew up a tomboy and love the outdoors, sports, and excercise. I am very laid back , and although I have a childhood history of unexplained depression have a very positive and happy spirit. I am determined and stubborn as all get out and have kicked my own butt ot stay in school - I was told taht it was impossible by several doctors, but I'm still here after a semester and a helf. I have had a blessed life, amazing family, adn strong spirituality.
- being sick like this is so out of my personality
I sometimes have to be bathed and helped to the bathroom. I have to sit out and watch all of my friends doing the things i love so much, i am so independednt and bear the emotional pain of having to be babysat, i can't drive anymroe or work anymorre - i am a very hard worker, i feel as if i constantly fight to be normal and am often ashamed and secretive about being sick to others - i just want to be normal............
I pray and plead that ya'll feel called to ***** and give insight and advice to me. I have been to so many doctors, had so many tests,  and have been in the hospital so much, and have had no answers. all or my bloodwork is normal...every test i've taken has come back normal, so why am i so sick?

I refuse to accept the fact that I'm goign to be like this for the rest of my life. I've been holding on the the belief that God wants me to be a patient before I can be a doctor. I'm going to be a music therapist for hospice children.

Thanks for making it through this email..i know it's so long..i've never considererd writing in a forum before.

Go with peace, and may you all feel the promise of a warm day tomorrow.
Blessing,
Sarah Jane Bennett

[ggreg]

Here you go, Sarah.  
www.dizziness-and-balance.com/disorders/medical/orthostatic.html

Basically your condition can be caused by:
1. Low blood volume from bleeding, anemia, dehydration
2. Medication-related from BP meds or depression meds
3. Primary adrenal insufficiency and low cortisol levels
4. Chronic fatigue syndrome or basilar migraine

Get your doc to review your medications first.  Then look into anemia and adrenals, for which a doc can do the following blood tests: CBC, glucose, cortisol, potassium, creatinine, electrolytes.  You have ruled out heart causes and your fast pulse rules out neurological causes.  If it's not your medications, which it could most definitely be, then I'm leaning towards the adrenals because the skin can be involved in that.  I don't know what causes the adrenals to goof up, but diabetes can be associated with that particular problem.

Oh, and your collapse eight months ago is explained by the orthostatic hypotension, the one thing the docs do know about you for certain, which is why I gave you that website.

Hope this gets you going.  GG