How Narcolepsy Took 20 Years of My Life

Was there ever a time in your life that you knew something was wrong, but neither you nor anyone else could figure it out? Or, maybe a doctor told you you had something like attention deficit hyperactivity disorder (ADHD) or oppositional defiant disorder (ODD), and you really didn't?

Well, that is how I spent 20 years of my life.

Diagnosed with ADHD at age 8

When I was younger, I used to be very argumentative with authority figures, got angry easily, always liked to push adults' buttons. My doctors told my parents I had ODD at 6 years old. Around age 8, I started to have a hard time taking turns, paying attention, talking too much, and getting along with others.

My parents took me to another doctor, and they diagnosed me with ADHD. They put me on medication and that seemed to help for a while. The medication they gave me was Ritalin. I was on this for around 1 to 2 years.

A rocky road and no answers

After I was on the medication for 1 to 2 years, it started to not work as well. By that time, I was in 6th grade. My parents took me back to my doctor, and the doctor I had at that time said they had nothing else that I could try. My mom searched for other doctors, and eventually, we found one, who I am still currently seeing to this day.

This doctor tried several different medications. None seemed to work. When I was in 7th and 8th grade, I had a really rough time in school and missed a lot of school. I was treated for anxiety and depression, but none of the medications ever helped me.

Once I got into high school, I started to have other health issues as well. I had to have my gallbladder taken out at age 15. Since having that procedure done, I have been dealing with irritable bowel syndrome (IBS) and still do to this day. Since then, I missed more and more of school. I was getting headaches and saw several doctors for that, but eventually, they told me there was nothing else they could do for me.

Struggling in school

My senior year of high school was probably one of the worst years in school for me. I was getting headaches, stomach aches, was very tired, and had little to no motivation to go to school. This was weird for me because up until my senior year of high school, I wanted to be an elementary school teacher.

I missed so much school; I was going to have to repeat classes that I was really struggling in. I had a few different options, but the one that made the most sense to me at the time was basically dropping out and doing my classes on my own time at home.

Missing out on my senior year

It ended up working out and I graduated on time, but I did not get to have a ceremony like my friends. I missed out on a lot of high school activities and experiences by doing this. Everything from senior prom, cheerleading, other school dances, pep assemblies, and graduation. At the time, it really did not bother me, but now looking back almost 6 years later, that is one thing that I truly regret doing.

At the end of my senior year of high school, I saw a neurologist. He did several tests, including a sleep study. Everything came back normal, so he said there was nothing else he could do for me. I was used to that by then, so I went on my way.

The doctor who changed my life

Freshman year of college came around, and at the beginning, it went well. I then started to date this guy and was in a very unhealthy relationship. I gained a lot of weight, slept a lot, could not keep a job to save my life, had a hard time keeping friends, and so, so much more.

When I was 20, I got diagnosed with fibromyalgia. I had to go to several different doctors for that as well. When I had my very first intense flare-up, my family doctor recommended me to a pain and rehabilitation doctor. He is the doctor who changed my life when I saw him at age 21.

Finally getting a narcolepsy diagnosis

At first, we talked a lot and tried different things, different tests, etc. He is the type of doctor who really listens to his patients and explains things to them. A couple of months after I turned 22, he was talking with me and told me he was concerned that I might have a sleeping disorder.

He referred me to a sleep specialist. Within a month or 2, I got in to have a sleep study and MLST, where I found out that I have narcolepsy type 2. I had never heard of narcolepsy until that day.

Medications to manage my narcolepsy

My doctor recommended that I take Xyrem, modafinil, and methylphenidate, which I am still on to this day.

Unfortunately, my sleep specialist is not very familiar with narcolepsy, and I feel that I need to get a second opinion as far as managing my narcolepsy goes, but at least it is a start.

Making sense of my story

I was talking with my mom a month or 2 ago, and I asked her if she remembers me falling and hitting my head ever when I was younger. She had to think for a while, but she did tell me about this one time. She said, "Well, I guess you did fall backward out of your stroller at age 2. You had a slight concussion. You were never the same again."

When I look back at all of the things I went through, a lot of them explained in this story, it all made so much sense. I had narcolepsy symptoms for 20 years before finding my diagnosis.

I will not settle for less

The moral of the story, my name is Tara O'Connor, and I am about to turn 24. Since I started to get the right treatment, my life has been all about changing for the better.

I still get very little support from anyone besides the support groups that I am online. I still learn something new about narcolepsy daily.

Do not ever settle for less, let people tell you it is in your head, or let others' opinions affect you and the way you do things. You have to listen to your body. I hope that one day, I am able to share my story and advocate for narcolepsy as much as I can.