Sunday, December 20, 2015

How it all started.

I was diagnosed with dysautonomia in fall of 2010 by Dr. Fischer at the Mayo Clinic in Minnesota. I was 17 at the time. I had been struggling all through high school with symptoms that were leaving me homebound and unable to be a "normal" teenager. At 15 doctors diagnosed me with Fibromyalgia because they could not explain or manage my symptoms. I had a few good months here and there, but always struggled with pain and other unexplained symptoms.

At the Mayo Clinic in Minnesota, post dx.
After seeing Dr. Fischer he changed my diet, treated my anemia and suggested some lifestyle changes. The dietary changes put a bandaid on my symptoms for about a year. I was able to be somewhat productive that year by getting a job and I got to ride my horses.

In the fall of 2012, while slowly going back down hill I started seeing Dr. Abdullah at the Children's Heart Institute. He was the first doctor to prescribe me medications to manage my symptoms. He also confirmed my diagnosis of dysautonomia, but also diagnosed me officially with atypical POTS. Dr. Abdullah was able to get my symptoms to a manageable level and keep me in school.

Just a usual monthly appointment at the
Children's Heart Institute.
I continue to see Dr. Abdullah on a 6-8 week basis for maintenance and to track my condition. Up until 2014 he was able to keep my symptoms at a level where I could ride and manage my pain with OTC medications. I continue to do PT, massage and chiro as well.

In 2014 my symptoms started declining in the fall, so medications were adjusted and I started seeing a pain management doctor that winter. I resumed the trigger point injections every two weeks, like I was doing in high school on a weekly basis. They started managing my pain with opioid medication, as well.

The first trail ride out with the baby horse.
The spring of 2015 was a good one, no injuries and I was feeling good with that current med cocktail. It wasn't until the good ole Virginia summer heat, that I started experiencing more and more symptoms. Dr. Abdullah finally gave me the diagnosis of Ehlers Danlos Syndrome, something we had expected all along due to numerous tendon/ligament injuries and other text book symptoms. New symptoms hit me like a wave; a very fast, very strong, brutal wave.

For the first time in my life, I wasn't just cold sensitive but I was also extremely sensitive to the heat. If I did go outside, it was in cooling clothing with a cooling vest. Heat would trigger migraines that lasted for days. My ears would ring and sometimes I even lost hearing in an ear. Something that used to help my pain, now made it 10x worse.

My EDS-y body was popping and hurting more each day. Things that didn't pop before, had started to pop and overextend. I started having neuropathy in August, that went from tingling fingers to my entire arms to sometimes not even being able to feel or have awareness of entire limbs. Bending over caused me to lose vision, get tachycardic and have full body waves of nerve pain. Moving my neck while driving caused excruciating muscle pain and sometimes shooting pain through my arms or legs. I was still in school and making really good grades for once, so I pushed through.

From being outside for less than 20 minutes, with limited
physical activity.
By fall, Dr. Abdullah had doubled my dose of midodrine for me to just stay "stable". The syncope was getting more frequent if Remi didn't catch it or I wasn't being cautious enough. I started experiencing more bradycardia than tachycardia, and severe pressure headaches. I was feeling mentally exhausted with severe brain fog - to the point forming sentences was hard. On September 30th, I went to the ER due to one of the worst migraines I've ever had. I was passing out from the pain and barely coherent. They did a typical work up and head CT - showing absolutely nothing, as usual. They sent me home on IV meds and no new answers.

A day in the life of a spoonie service dog.
By that evening the neck pain and headache returned. That week, I went to see my pain specialist in hopes that he may be able to get my neck pain under control in order to not trigger anymore headaches. Well..that didn't work. I had my usual trigger point injections that lasted about two hours before sending me into a deep spiral of excruciating pain.

On October 1st - I started seeing Dr. Chehrenama, who after reviewing my very long, very detailed history suggested that I may have chiari zero. I was kind of shocked that it wasn't just an unstable vertebrae pushing on a nerve, that there could actually be something wrong with my brain and spinal cord. She agreed with the neck instability and ordered an upright MRI to confirm.
Waiting to see Dr. C.

I waited weeks for an appointment at the nearest upright MRI facility, in Maryland. The morning of my appointment, an hour into my drive, they cancelled. I was absolutely devastated. I was counting on this MRI to give me answers so that I could FINALLY get some kind of treatment. My symptoms were worsening to the point of missing classes and barely able to go to work. I was beginning to think I was going to go back to where I was five years ago.

I frantically started looking at MRI facilities that offered this scan out of state. While I was frantically looking for someone or something to help me find the answers, my fairy godmother suggested I look into seeing Dr. Liu at University of Virginia. Within twelve hours his office had emailed me back to schedule an appointment that week. I was shocked, excited, relieved and overwhelmed that I might finally be seeing someone who could do something to help me. This is where I leave you.

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