In a nutshell, my "new life" began on October 23, 2010 when I was just a freshman at my high school in Katy, Tx. It was the night of my first homecoming high school dance and I was looking forward to attending with my friends. We were dancing on the dance floor to Shakira’s “Hips Don’t Lie” (my now infamous song) when I started feeling “off”. I never had that feeling before and I did not want to leave my friends to go sit down so I tried to push through it. I then started having a sharp pain in my side. Before I knew it, according to my friends, I became extremely pale, my eyes rolled back and then I fainted right there in the center of the dance floor.
The summary of all the following doctor visits and ER trips: The first hospital emergency room thought I had a panic attack and pulled a muscle (my mom became a bit of an overprotective grizzly momma bear when they tried to tell her this.)
My then general doctor was not sure what to do with me so did basic lab work and they hinted at an anxiety issue. (Note I said “then general doctor”.. I go to a new one now) Waiting for the lab work to come back, I had another really bad episode at home. So, my mom took me to a different hospital: Memorial Hermann Hospital in Katy. They knew something was wrong, but was not sure what it was. So instead of sending me home, they decided to have Children’s Memorial Hermann Hospital review my case further. (Thank you Memorial Hermann!)
With Children’s Memorial Hermann Hospital being a teaching hospital, I felt like I was in the middle of a Grey’s Anatomy and House episode. I had teams of doctors coming into my room discussing possible diagnoses, ordering more tests and looking at me like a puzzle. I was feeling miserable, but thankful they were not trying to tell me I had an anxiety issue. They took me seriously and I found this daily routine of different teams of doctors (Cardiology, Neurology and GI) very interesting.
After a couple of days and all the tests coming back “normal”, the team decided to have me get up to walk to see if they could witness my reaction in person. The physical therapist came and attached me to a waist belt. As I got out of bed, I became more pale. I made it a couple of steps when I collapsed. They began checking my vitals and it was then they noticed my extreme drop in blood pressure and my heart racing. (For the previous days, my blood pressure was taken as I was laying down… so no change could be seen) Assuming it was a dysautonomia, the wonderful Dr. Numan (Director, Pediatric Cardiac Electrophysiology) began to lead my case and ordered a tilt table test where I passed out in 4 minutes, but thankfully got my official diagnosis: Dysautonomia subtype Neurocardiogenic Syncope.
Summary of my symptoms at that time: low blood pressure, inability to stand for even a few minutes, fainting, collapsing, dizzy, nauseous, pale, very weak, chest tightness, extremely exhausted, legs would not work very well, pain on the side of my abdomen, heart racing and very bad brain fog.
The medications they started me on helped quite a bit. They allowed me to walk for short distances and I felt exhausted, but better for several weeks.
New debilitating symptom and surgery: In Jan 2011, I began to get excruciating migraines that would leave me in total darkness for days. I could not tolerate light or noise. Watching TV or looking at a computer screen made it worse, so I remained in darkness. Add this to the host of other symptoms I had previously, I was now worse than I ever was. Dr. Numan was very concerned and wanted to do a Cath Bubble Test to see if I had any holes in my heart.
He has found that in some people with ASDs, migraines can be triggered and can be fixed by placing a helix device in the heart to close the holes. My tests results were that I had not 1, but 3 holes in my heart and had higher than normal leakage of unoxygenated blood to my brain. After getting the helix device in, my migraines were 99% gone beginning that very next day. (This surgery only helps the migraines. No promises were made to help my other dysautonomia symptoms.) To see the Fox News report on my surgery, click on this link. At that time, there were just over 30 patients who had this surgery for migraines.
The following months were migraine free, but I still had other very debilitating symptoms that would come and go. Most weeks, I may have 1 or 2 decent days. Needless to say, I spent most of this time in bed. Patience to find the right medicinal and therapies route for dysautonomia is required. My biggest advice? Always try what your doctor recommends. And always talk to them before stopping your treatments. There are many different types of help available, but you really need to talk to your doctor before changing on your own.
Fast forward to November 2011 – more tests! By now I started having seizure-like episodes/tremors all over my body for approximately 30 seconds; having severe nerve pain; my temperature “gage” was off as I would be extremely hot one minute and cold the next; my right leg would not work for hours/days after a collapse; my exhaustion was indescribable and I would get these sharp stabbing pains in my abdomen; constant dizzy and nauseous feeling; and major brain fog, just to name a few.
Changing my focus – Helping Others: Feeling exhausted and tired of being poked & prodded, I decided to put my focus on helping other teens in my situation and started a charity called Mik’s Hidden Hearts Alliance. While I was in the children’s hospital, I noted that everything they had was geared for little kids. The shampoo was for babies, most of the movies and books were for little ones too. I decided I wanted to help teens in the hospital and homebound receive gifts just for them. So they would not feel hidden anymore like I did from time to time.
As I recovered from these tests (general anesthesia does a number on me for weeks), friends and family donated gift cards, teen focused gifts and toiletries. I was so happy when, before Christmas, we delivered not only dozens of “Hope Kits” to the teens at Children’s Memorial Hermann Hospital, but we also supplied the hospital with a new library of teen focused movies and video games. Though my body was not feeling good, this made my spirit soar.
As of now: Though I look “normal”, I still struggle with severe Dysautonomia on a daily basis. Compared to when I first got sick, I have made great strides in my ability to have longer spurts of energy and walk longer distances. However, every day is a struggle with feeling energetic (big difference on the energy thing... I can push through longer, but I am constantly exhausted), brain fog, overall body aches, constant dizziness, nausea, etc. We continue to tweak my medicine regimen to see if we can find the right “fit” for me and currently doing some of the experimental treatments to see if they work for me and possibly others. Physical therapy with a knowledgeable dysautonomia physical therapist is also key into my improvement. I worked with the team at Spero Rehab in Katy, Texas and they have done wonders!
For the most part, I have accepted this “new life” because it is what it is. I prefer not to dwell on it, but focus on what I can do for others. I have made peace that I will not ever be able to attend high school again. (After attempting to go back my sophomore year, that theory lasted just a couple of weeks. Back to homebound I had to go permanently.)
Thank you for following my journey and I hope the information on my pages give you insight and hope. If you ever need to chat or vent, please message me. I would love to hear from you! If you know of a teen who has Dysautonomia or other life changing chronic hidden illness, please send me their information. We would love to send them a hope kit! (Nominate them through our Hope Kit page)
Doctors and those who have helped me on this journey and have not given up on me : )
- Dr. Mohammed Numan (Director, Pediatric Cardiac Electrophysiology)
- Dr. Butler (Neurologist)
- Dr. Varner (Neurologist)
- Rebecca Martinez, RN (amazing Dysautonomia nurse who helps with the many week to week issues)
- Dr. Joshua Defriece (My very caring general doctor)
- Children’s Memorial Hermann Hospital
Mik's Story - The Video
The Impact Video
We are The Voice - Dysautonomia Awareness
Mik in Fox News Report
Does your child suffer from migraines? That could be the sign of an abnormal heart.
The symptoms of Atrial Septum Defect usually peak in kids 12 to 18-years-old. It's often misdiagnosed and only gets worse if it goes undiagnosed.
"I would feel normal walking around. Then people would say they would see my eyes rolling in the back of my head," said 14-year-old Mikaela Aschoff.
Read more: http://www.myfoxhouston.com/story/18234282/migraines-could-be-possible-sign-of-heart-defects#ixzz2ooCE2WIJ