Chronic Illness · Life Posts

The Road So Far

TW: GI symptoms and weight loss

Three years. Three very stressful, tearful years filled with fist-shaking, heartbreak, regaining of hope, and still very few answers. Today marks three years since the mild traumatic brain injury that changed my life and disabled me.

The TBI gave me crippling migraines. For almost two years I had a headache that never went away. I have on average 20+ migraine days a month with symptoms like photophobia, sound sensitivity, nausea, vomiting. I had to take a year off school then go back with online and homebound because on-campus was just too much. I completed one semester on-campus this year but am going back to online and homebound because it has gotten to be too much again. I am already getting a tinge of relief since I have been on winter break. At least I am learning my limits and I know when to stop myself before I push to far (at least migraine wise haha).

Through the TBI other symptoms began presenting themselves, one of them being extreme dizziness and unsteadiness. I had to go back and redo vestibular therapy after graduating it at the concussion clinic because my symptoms came back after I weaned off my exercises. Since graduating that and having the same thing happen but having already been released by the clinic, we brought it up to my pediatric neurologist. She referred us to a cardiologist because she though I had Postural Orthostatic Tachycardia Syndrome based on some other symptoms I had been experiencing. Those symptoms being chest pain and a recurrent racing feeling of my heart, especially after I would go to lay down after activity, and a few fainting episodes.

My neurologist also referred me to a geneticist for suspected Ehlers-Danlos Syndrome, a connective tissue disorder based on some constant joint popping and cracking, pain, and subluxations. While waiting on my genetics appointment my cardiologist discovered that I had something called a Pectus Excavatum, a sunken chest. The Pectus, he believed was worsening the symptoms of my Dysautonomia, a dysfunction of the autonomic nervous system causing dizziness, fainting, nausea, brain fog, and so much more. We have not done a tilt table test so we aren’t sure of the specific form as there are many types of Dysautonomia. But a Pectus chest correlates with some connective tissue disease traits, so we sent of a sample for a gene test for a few different connective tissue disorders and diseases.

I have yet to see a GI doctor, but am awaiting an appointment for one. The list of GI symptoms is a long one. The main one being the persistent, daily nausea I experience on the daily along with the throwing up of undigested food days after I have eaten it. Between approximately September and October I lost over 20 lbs. I have fluctuated a little since then, hovering around 108 lbs but dropping to as low as 100 lbs and never getting over 115 lbs. (I only stayed at 115 for about a week and I believe that was around thanksgiving lol) I am 5’7″ and 120 lbs is what I would consider fairly decent for my height and build, so when I lost all that weight it really affected me. I became weak, even more fatigued than usual, I am extra freezing (so much so my hands would hurt) , and I am hungry…but the thought of food made my stomach hurt and me want to vomit.

A serious issue that has been a concern of mine lately has been my back. I have had back pain since the concussion from being laid up in bed all the time, but over the past year it has increased significantly and I have had a few scary episodes. I now have copies of my cervical, thoracic, and lumbo-sacrial spine and will have my primary care look at them asap. I feel something is wrong even though the report says everything is clear. It hurts way too bad for nothing to be wrong and I do already know I have mild scoliosis which they did not note. I can barely stand for more than a couple of minutes with out being in pain and many positions are just plain uncomfortable. Hard backed chairs like dining chairs suck,  plain and simple.

I struggle with these symptoms everyday, I take 11 medications and supplements for them… it adds up to 20 pills a day. But in a way I am thankful for the concussion for shedding light on these issues that may not have appeared till way later in life or caused me to suffer undiagnosed and unknowing. And many would, by then, have caused more harm to my body. I just wanted to give a run down of everything as a little life update sort of. Here’s to many more years post-TBI and hopefully some more answers and relief. ❤

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