I could go on and on about all the medications they have tried, all the tests they have and have not done and all the parts of my life that being sick has destroyed .... but i won't -- I just want to know whats wrong with me - I just want help -- I can express enough how much I need to feel alive and how quickly i need it to happen. I have a family and i'm only 32 years old but I'm scared, I'm confused and i'm so very very lost.
MY SYMPTOMS - ( in general ) My hands shake, I constantly feel like i could vomit, i get severe migraines with blotchy vision and horrible neck pain. I shut down completely if I get cold and going from one temp to another will more than likely result in me breaking out in hives ( such as getting out of a warm shower on a cold day ). But the worst and the most obvious symptoms are fatigue, depression, and memory loss .... confusion and anxiety. There are moments when i can be in the middle of something and just go into a zone -- most days i appear to just be high or drugged out -- sleep tests have shown that sometimes even when i appear to be awake ( like eating or watching tv ) the computers or sleep test machines will show i am in stage one sleep. SO clinically -- i'm sleep walking through much of my day. Getting home from family outings I may look at the photographs and not even remember being there just days before. Some days Holding my head up or my eyes open is impossible. And how many times more will I have to ask my kids what grade they are in or how old they are ??
I'm a mom -- I want to be out playing with the kids and enjoying life but i just cant do it.
I was diagnose with narcolepsy about 5 years ago and though the genetic test confirms i have the narcolepsy gene ... i'm not totally convinced that is what is wrong with me. However -- even going to a new dr. once they see that diagnosis -- thats what they grab on and treat me for.
At one time I was up to 60 mg adderall 3x a day and that wasnt the only med i was on. Even had me take a sleep test while on the adderall and i went right to sleep ( lol = they kept me on it though ).
My dr. now asks ME " so, what do you think we should try " ..
PLEASE help -- yes - i'm depressed - but only because i'm so very very tired. What are they missing ?? where do I go ? I dont have the ability to research and my comprehension gets worse by the day.
PLEASE HELP ME