The Second Opinion

I lost faith in my neurologist. I was fully transitioned onto my new medication, yet still having seizures. That’s when he started me on a sleeping medication, which I agreed to take for 30 days, and felt I made myself abundantly clear about this. I made an appointment after the 30 days to discuss weaning off the sleeping medication appropriately so I would not go into withdrawal. His solution… to stay on them for another 30 days. I was not impressed. After having yet another seizure in January, thanks to being ridiculously sick (I was unaware being sick, the body being under stress trying to heal, put me at risk for having one) nothing was done by this neurologist. I was done. 

Ask me how excited I was to receive a phone call for an appointment with an epileptologist at the hospital. An epileptologist is a neurologist who specializes in epilepsy! My faith was lost in my other neurologist, however I had new hope on the horizon. My appointment booked for February 16th at 9 am, with a new doctor who would hopefully find the solution for me to be seizure free. The weeks between the phone call and the appointment felt long, but I knew it would be worth it! 

I had yet to leave a neuro appointment not crying. After a poor experience with my first neurologist, the anticipation of the unknown, meeting a new doctor, unknowing what to expect, I was a little nervous. I showed up to this appointment  prepared, unlike previous appointments. Notebook and pen in hand with questions to ask, ready to write down important information so I wouldn’t forget. My mom came with me in case it didn’t go well. If bad news was given, or if I forgot something. The second set of ears tuning in would be beneficial. 

Bright and early on a Sunday Thursday morning, sitting in a room at 850 am, patiently waiting for my 9 am appointment. Hopeful to come up with a plan that would lead towards being seizure free. Hopeful the doctor (for lack of better words) didn’t suck. The doctor walked in along with a medical student in training. They both were professional, and welcoming. 

He had gone over the notes from my previous neurologist. I knew this was going to go well once he said he wanted to get his own version and information from me. We stated from the beginning. We were able to truly go back to the beginning thanks to my mom being present. The pregnancy, birth, newborn stage and infancy. I was able to share my teenage years, adult years and answer all of his questions. 

We discussed the first episode (there is no way of knowing to date whether or not it was a seizure) that I remember. I was in grade two at an after school program. I remember sitting at a computer. The next thing I remember, was coming to, but I was lying on the ground next to the computer, with people surrounding me. This lead to multiple trips to the IWK where the testing began. Interestingly enough though, never an MRI on my head. The doctors were convinced it was related to my heart not my brain. Nothing was found in my childhood/ early adulthood years, and to this day, I do not have cardiac issues 

The epileptologist gathered the necessary information, and did a full neuro exam which showed no issues. Where I had a MRI at a private clinic, I was given a CD copy of the images and gave it to hime to review as well. He then gave me time to ask my questions and share any other concerns. 

Next… the conversation of treatment plan options. I was terrified they were going to recommend surgery. It is done for those who need it, and is truly the only way to ‘cure’ epilepsy. I use the term cure lightly, as I know several people now who have undergone surgery and unfortunately are not seizure free. A seizure occurs when there is an episode of abnormal electrical activity in the brain. When these rapidly firing neurone surpass a threshold, physical symptoms occur. Medications help manage this, but they do not cure the part of the brain that causes it in the first place. As much as I would love for the epilepsy to be completely gone, surgery is not an option for me, and honestly, I am okay with that (I didn’t want it anyway)!

He began talking about different medications, their pros and cons, including the one I was currently taking. Do you know what he did after he was done explaining the different options? He asked… “So what would you like to do? 

UMMMMM excuse me?! I get to partake in the decision process for MY treatment plan! My respect for this doctor went through the roof. For the first time I was included in the conversation how to best manage my epilepsy. Being informed of different options, given the opportunity to share how I felt and what I wanted to do. This was empowering. 

I chose to stay on my current medication. I felt it was treating me relatively well. He respected my decision and wanted to ensure I was on an appropriate dose to control the seizures even during times of illness and or stress. He upped my dose, which I was comfortable with. He let me know if, within 30 days I changed my mind and wanted to try a different medication, the timeline would not reset to get my license back, as long as I continued to remain seizure free. Having this information, knowing I had the option to change my mind in a few weeks again, just so empowering!

I left the appointment with a new treatment plan, a follow-up appointment, and the beginning for a return to work plan. Mom and I got in the car. As I sat in the passenger seat, I was beaming with positive energy. I wasn’t crying for the first time after a neuo appointment. I was excited. Excited to have this amazing new doctor who cared about my overall wellbeing. Excited to work towards being seizure fee. Excited to start living my life again. Excited to truly accept this diagnosis, and move forward with healing. 

Until next time…

If you are existing instead of living, suffering, etc, get a second opinion, maybe even a third if you feel necessary. Doctors, specialists, whatever it may be, have different approaches when working with patients. You deserve options that are intended to help you feel well. You deserve to have someone who has your best interests at heart. You deserve to have someone who truly cares about your overall wellbeing and wants you to live your best possible life. 

In our current health care state, I can appreciate getting to see a doctor, little own a second opinion. It’s worth the persistence. I truly feel if I did not meet the epileptologist, I would not be sitting here writing these blogs, heck theres a chance I would have still be having seizures. This week marks 15 weeks seizure free. The longest I have gone to date! This is something to celebrate. I am hopeful to continue down this road of being seizure free. 

I am grateful for my current treatment plan. I have 0 side effects from the medication at this time. I am off the sleeping medication. I am happy, healthy, and continuing with my health and wellness journey. I hope you continue to follow along as I share the acceptance of my diagnosis, what health and wellness practices I have put into place to help support not only my epilepsy but my overall wellbeing, and what I have been up to, to get me where I am today.