Build the Best Healthcare Team: For You

This post is part of the Epilepsy Blog Relay which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

Living with Epilepsy, or any chronic illness, requires you to have the best healthcare team available. Finding these physicians are not always easy. Referrals, research, office visits, testing, its like an unending cycle just to find someone who suits you and your needs. Many times I questioned if my doctors really understood my epilepsy. Were they as empathetic as they led on? I came to realize that the healthcare team that I came to know and love over the years, were the #squadgoals one could only dream of when it comes to their medical care.

3 years ago I walked into my Primary Care Physicians office confused and completely hopeless. God knows I was trying to see the bright side, trying to be optimistic about what she would reveal. Waiting for her to enter, I rehearsed in my head what I would say. My mom believed it was seizures again but I could not bring myself to that conclusion. Dr. B. came into the room (not using full names here) ready to start the appointment. I explained I was having these intense migraines, forgetting tasks in the middle of them, not remembering how I got from point A to point B, smelling weird smells only I can smell and lastly losing complete control of my speech. The response I got was hmmm. Hmm? What do you mean Hmmm lady?! I proceeded to say “I had seizures my entire childhood.” The moment those words left my lips she immediately started a series of questions. From do you remember when this started? Did they happen while driving? What were you doing? After admitting I was driving during one of these episodes, she promptly referred me to a neurologist; Dr. V.

Oh Dr.V. Promise I threatened to find a new neurologist every visit. Why? Because he was/is the best and told me what I needed to hear and not what I wanted to hear. Truth hurts. He told me I could no longer drive, I would have to go through EEGs, MRIs, get back on medications; all of the things I went 17 years without doing. Wait, what? I was seizure free for 17 years. It felt like my entire life had just crashed right before my eyes. After the first 2 months of self-sabotage, I decided I would not let this defeat me. Epilepsy will not win. I was determined to gain my independence back.


It was time to change focus. I did research on my type of epilepsy (Temporal Lobe Epilepsy), identifying seizure triggers and how to safely live my life. I had to find my new norm. Every new detail was taken back to Dr. V where he confirmed my findings. We even joked about why I actually make appointments these days, to find out if I’m right or if there was an actual problem. We adjusted meds when needed and noted ones that absolutely did not work. Open communication is one of the biggest keys to successfully treating any condition. The more we communicated, the more we noticed we were getting these monsters under control. I went from having 10-15 seizures a month to 3-4 a month. True diligence on both ends. Dr. V was even more determined to get these last breakthrough seizures controlled.

My last post, Back to Basics: What is Epilepsy?, we talked about my Temporal Lobe Seizures, Nocturnal Seizures and Catamenial Seizures. The culprit of the breakthroughs were the catamenial seizures; seizures triggered by hormonal changes in women. With both of my doctors working together, we were able to manage these and find a medication to treat. Two seizures a month now..I’ll take it! That is my new norm. Granted there may be outside forces I can’t control but I know if a seizure occurs outside of that threshold, then something is definitely wrong.

Having a health care team that works together can be highly beneficial. It will take more than one speciality to treat you sometimes. There are often underlying causes that can also affect your quality of life, in my case it was stress. So in an effort to avoid further medication, I turned to Mindfulness Meditation and MORE self-care. With the help of tools like the Epilepsy Health Storylines app, it makes it so much easier to keep track of my seizures between visits. Dr. V and Dr. B. have truly become family to me. I really see them more than my actual family lol. They encourage me to continue this epilepsy fight, to continue advocating for the community and speaking up for those who are afraid to speak up for themselves. I will be forever grateful to them and all the doctors, nurses and medical professionals who take care of us all every single day.

NEXT UP: Be sure to check out the next post tomorrow from Sandra with Sunovion at www.livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

With Love,

Whit

cf.epilepsy@gmail.com

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