Here's my story...
I started noticing changes when I was 13 years old. I started getting a stomach ache every morning before school, that would last until mid day, then go away. This happened every day after breakfast. I told my parents about it, and we talked to the pediatrician. They had a few theories: lactose intolerance, acid reflux, and irritable bowel syndrome. However, no testing was done...and since I had no other symptoms, nothing else was pursued. I was otherwise healthy...no skin issues or anything else abnormal.
The stomach issues persisted through out the years, but I just grew to knew that as normal 'for me'. I never wanted to drink alcohol because I was always paranoid of getting really sick. I just told people I had a 'weak stomach'. I didn't know what else to call it.
I always struggled with my weight, despite always being active. I was a thin child, then became chubby/overweight at the age of 8. I danced from the age of 3-10, joined the swim team from 10-11, played basketball until I was 15, then did volleyball, etc etc. I was always more active than my friends and ate less, but I was the overweight one. My weight didn't seem like it was going to budge no matter what I did. Besides the ongoing stomach issues (that I had gotten used to by now) my weight was the only issue. I wasn't morbidly obese, but I was definitely bigger than I should have been for how active I was.
Fast forward to 19-20 years old. (2007-2008) I suddenly had very terrible acne. I had never really had acne or skin issues. I also had very irregular, heavy, and excruciating periods. I would sometimes skip 1-2 months, and I was in so much pain and so nauseated during the first day, that I would often spend at least 3 hours curled in a fetal position. My gynecologist decided to put me on a birth control pill (Yaz) to not only regulate my periods, but help with my acne. Within 2 weeks of taking the pill, I started getting dizzy spells. I had NEVER been dizzy before in my life. Along with the dizziness, I started to feel differently. Like...'fuzzy'. As if I wasn't really there. I definitely did not feel like myself anymore. Blaming the pill, I immediately got off of it. The dizziness/weird feeling both continued despite getting off the pill. The dizziness in particular continued to get worse...the fuzzy feeling I couldn't even explain. I finally went to the doctor and they tested my blood levels, then told me I was anemic. I was given a prescription of iron pills. Unfortunately, this led to me becoming constipated and led to blood in the stool. I went back to the doctor and found out that I now had a fissure. I was advised to stop taking the iron...but even when on the iron, the dizziness persisted.
Next was the ENT. He checked my hearing/inner ear to see if the dizziness was caused by some kind of inner ear problem. Everything checked out fine, but when he was pressing on the side of my face, I winced in pain. He realized I had TMJ, and that I must be clenching my teeth in my sleep. He talked to me about my stress levels. Indeed, I had been insanely stressed. My personal life was crazy with school, a job, and a long distance relationship..on top of random health problems. He prescribed me valium, but I was too afraid to take it...fearing the dizziness would get worse. I never took it.
My parents treated me like a hypochondriac and didn't seem to believe me that I was dizzy, because the doctors couldn't really find anything wrong. I started seeing a dermatologist for my face, because even though the acne had mostly faded, my cheeks were pink and blotchy. I was diagnosed with rosacea and given an oral supplement - oracea. Despite being afraid to try it, I did - and nearly passed out from work due to the dizziness. I blamed that pill, and stopped taking it. I was given topical treatments (metrogel, etc) but nothing worked. I tried anything I could...Proactive, etc...nothing helped.
Soon I started seeing a new PCP, and I told him about my dizziness issues. I explained that no doctor had been able to figure it out. He did a test - he checked my blood pressure, then had me stand up and he checked it again. It dropped 20 points. He diagnosed me with orthostatic hypotension and told me there was really nothing I could do for it, besides increase my salt intake. I was happy to have a name to it, and to have proof that it wasn't all in my head. I told him about the birth control, explaining that I never had issues until after taking it...but he insisted that it couldn't have been from my short time on the pill.
By late 2009, my stress levels had sky rocketed. Soon I found myself unable to stay awake, passing out at the computer...when in the past I could stay up as late as I wanted, no issue. My friends would actually time me and laugh at how quickly I would pass out...often falling asleep within the same minute as typing to them. This persisted for awhile. I was ALWAYS tired, no matter how much sleep I got, no matter what time it was. I started falling asleep in the movie theatre, and in class. I started to feel concerned that I had narcolepsy, since I couldn't stay awake. My parents really had a laugh at that one and basically treated me like an idiot. My doctor didn't take it seriously either, but he did refer me to a sleep specialist. Besides always being exhausted and falling asleep at the drop of a hat, I sometimes stopped breathing in my sleep and I experienced sleep paralysis from time to time. The sleep specialist decided that he wanted to keep me overnight and do two studies - one for sleep apnea and one for narcolepsy. The end result was me being diagnosed with "idiopathic central nervous system hypersomnia". Rather than testing my vitamins or doing anything else to try to pinpoint the cause of my hypersomnia, he immediately tried to push me into taking a prescription drug called Nuvigil, that was for people with narcolepsy. Again, I never took it.
(to be continued...)