Been A Rough Week....so Friends And Family Friday got postponed a week. All of us epilepsy warriors know at times we have to go with the flow and rest our bodies even when people like me try to be stubborn and don't. YOU can still live life to the fullest, but at times just slow down a bit so others don't have to worry about you too.
I Have Been Diagnosed With Drug Resistant Epilepsy, Also Known As Intractable/Refractory Epilepsy
This is defined by the Epilepsy Foundation "when a person has failed to become and stay seizure free/controlled with adequate trials of two antiseizure medications (called ASMs)". You can see in the image below I have many ASMs to take throughout the day.
When my journey began with my Glitch many years ago when our boys were very young, I was able to be controlled on a high dose of Keppra. I would have breakthrough seizures here and there and have to go through the hassle of not having a license and everything else that comes with not being controlled. A side note, a big thank you to my husband for doing so much always. A big thank you mom for coming out to help when we needed you to. A big thank you to the wonderful colleagues and athletes I coached at the time too.
When this began to happen more often, my doctor at the University of Kentucky Medical ran some tests and my body had developed other seizures along with Keppra reaching toxic levels in my body. So she changed up my meds and I felt like I was starting over again.
When I started my journey, I was seeing a doctor at the Mayo Clinic in Rochester, MN, but when we moved to Kentucky and I wasn't happy with the care I was receiving, I was able to get a referral to the Mayo Clinic in Jacksonville, FL, with the help of the President of EKU, Dr. Michael Benson. Here they discovered I also had auto-immune GAD 65 epilepsy (see previous blog to learn about this type). With this new diagnosis, I began treatments of IVIG along with new medications.
When you're a female, your body goes through many changes which can enhance your seizures, pending the type. Well, I am that person. As my Mayo doctor says, I am very well known around the Neurology field. My case has been reviewed by many at conferences and discussed. I am very thankful so many have input on my case and not just one person.
My Current Situation Based On Being Drug Resistant
I am currently tappering off Klonopin, increased my XCOPRI, stayed same on Briviact and Lamotrogine. I then take Lorazepam as needed for emergency. I make sure to place all my pills in my pill container the night berfore, in the proper time slots for the next day. I also have alarms set on my phone to make sure pill times is accurate throughout the day.
I keep a seizure diary filled with anything where I feel 'off'. This helps the doctor greatly because he can look at the times and days on my RNS and see if it shows any seizure activity compared to my diary.(You can read about why I have a RNS in previous blog)
It's important for me to make sure I take my necessary vitamins, meditate daily, and exercise when possible safely. I continue to blog as an outlet for me and a way to connect while I hope this is also helping others. So please continue to spread the word, I love talking to so many of you!
Looking Forward To June 30th!
That is my next Mayo appointment. I am hoping to feel better along with getting more seizures under control! Who knows, maybe I can get off another one of these terrible meds!!
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I’m glad you found a system that keeps your meds manageable while providing docs with useful info. Hoping your June 30th appt goes well!💜🙏🏻💕