If you have read all of my posts, most likely you remember I was diagnosed with Amplified Pain Syndrome my junior year of high school. Now that you have some background knowledge I can tell you all about my journey that got me here today!
When I was a child I was always sick, around the age of eleven I had numerous sinus infections that were causing bad headaches. Until I was 14 years old my doctor, Dr. Dove, thought I just had really bad sinus inflections. But then she made the assumption that I was getting bad migraines and it was not my sinuses.
I started having horrible migraines a few times a month, and when they hit me I was out for at least a day. As time passed I began having migraines more often than not. When I had a migraine I would stay in a cool dark room and not come out until it was gone.
You can imagine how bad that would be since all I ever did was sleep, so when I had a migraine I always ended up getting dehydrated.
By my sophomore year of high school I made it to school two out of the five days IF I was lucky. I was in and out of the hospital being pumped full of fluids and a new concoction that doctors just knew would be the trick to get me better.
I was scheduled to see my migraine specialist, Dr. Katz, once a month to catch up on how I was doing. Sadly I saw him or my mom spoke to him more than once a month because he would send me to the ER when I couldn't knock out a migraine.
Dr. Katz had me on a gallon size baggy FULL of medicines to prevent, get rid of, and reduce pain. For what felt like forever, I was on a muscle relaxer twice a day. That was the only medicine that really screwed me up and everyone hated it. The muscle relaxer made me very hateful because I was in pain, always tired, and I was sick of being sick.
That all happened in the fall of my sophomore year, then January rolled around and right before I was supposed to return to school from Christmas break a migraine knocked me on my butt. Dr. Katz had my mom bring me to Topeka's Stormont-Vale Hospital so he could be there to treat me.
My doctor said to pack clothes for at least three days, because I wasn't leaving that hospital until I was better. I was treated with D.H.E. 45 (dihydroergotamine mesylate) once every four hours. I was there for five days... I came in with a migraine of ten on the scale of one to ten, ten being the worst. I left the hospital at a four, even though I wasn't completely better they sent me home anyway. I had to be taken off of it because it was getting extremely dangerous for me to have that much D.H.E. 45 in my system.
I have to say that was my lowest point in my life and I was so scared because my body started out with just pain in my head but ventured down to my neck, back, and hips. I had several MRIs, CAT scans, and X-rays done to try to figure out what was causing a 16 year old so much pain.
Eventually, my primary care physician talked to a friend of her's that works in Pain Management at Children's Mercy and I was referred and scheduled to meet with Dr. Hoffart to see if I had APS.
The day I met with Dr. Hoffart and her team, my life changed forever. Although I am not "cured" from APS because you are never completely cured, I am in a better place than I was in high school. I am so thankful for where I am today, I couldn't have done it without my mom.
So that's my crazy life! Over the course of these next four months you'll learn all about APS and the daily struggles that someone with APS goes through.