Jump to content
  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

It’s All in Your Head


by Jordan Relph

Hi guys! My name is Jordan Relph, and I’m 13 years old.

It all started February 25th, 2009. I got the flu and had a fever of 102.7. I was very sick. The second week, I tried to go back to school, but my mom came to pick me up because I could not stop coughing. After that, I slept a ton. I would wake up at 11:00 AM and eat; then I would go back to sleep. I would wake back up around 7:00 and eat and then go back to bed. My pediatrician diagnosed me with mono and told me to get lots of sleep. He said that I got mono because I was still recovering from pneumonia and the flu.

Two weeks later, my pediatrician said that I had CMV, a cousin of mono. I kept sleeping almost all day and night. Finally, I went back to school on March 23 but fainted during mass (I go to St. Thomas) and had to be brought home in a wheelchair. That night, I was at the hospital with paralysis. I was completely unable to move and was fed, bathed, and helped to the bathroom by my mother, friends, and family. The next day, we left the hospital because the doctors weren’t doing anything to help me besides the CT scan.


I stayed at home the next few days and was continually visited by loving friends and family. Then I was at Via Christi for five days. I was catheterized even though I had a history of kidney reflux. All the doctors kept saying that this was an anxiety problem and that it was all in my head. The only people who stood up for me were the psychologist, psychiatrist, and my family, of course. While there, I had an MRI, spinal tap, bloodwork, EKG, and psych testing. All were normal. Therefore, the doctors assumed it was mental since they could not figure it out.

My friend’s stepfather, who is the best heart doctor in Wichita, read my EKG and said that it was abnormal when the other doctors had said it was perfectly fine. The psychiatrist told us to stop the amitriptyline, which was given to me for migraines. She said that it was not approved for children and that my pediatrician should NOT have put me on it. She also said that when combined with Tussin DM and other meds that I was on, it could cause paralysis.


Five days after I stopped the amitriptyline, I was able walk!!! Then, we went to Children’s Mercy in KC. They were not helpful at all, and it was a complete waste of time. Throughout the summer, I had six urinary tract infections and was very sick. This was believed to have been caused by the catheter, which should never have been used for me.

I started to recover and was playing basketball again. On Labor Day, my brother came home from KU and gave me the swine flu. Also on Labor Day, I had a bad four-wheeler accident. Then, on October 8, I was given Lexapro for migraines. Three days later, I could not walk. I was immediately taken off the medicine. I started having fainting spells and weakness. I was also having stomach pains and nausea. My new pediatrician suggested that I have a mid morning and afternoon snack to help with the migraines and fainting. When I was on my period, I fainted over thirty times at school. My school kicked me out because they said I was a distraction.

I have been to five neurologists, but finally I found the right one. My new doctor spent seven hours with me and ran multiple tests. He diagnosed me with a collagen disorder, POTS, migraines, and vasovagal syncope. He was amazing. I am currently being tested for diabetes, lupus, and other diseases.

I am so glad that they finally figured out what I have. Finally I can say that I do not have a mental problem.  Hopefully the school will be more lenient now that they know it’s a medical problem and not psychological.

User Feedback

Recommended Comments

There are no comments to display.

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...