CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story TitleAfter finishing up my APRN in Pediatric Neurosurgery, I began working on my Nurse Practitioner License. Only a year in, at the age of 20 I had a seizure and it resulted in a concussion- of course we judged it as just a concussion and the seizure as a result. I went one full year and again had a seizure, just with no concussion to blame the cause on. I was declared status epileptic at age 21 and began AEDs.

I continued to work in the medical field and finished my NP license, but told few about the seizures or that I was Epileptic. Finally, the physician I practiced under gave me two options- to see an Epileptologist or quit. Unwillingly, I became a patient at Emory University's Epilepsy Clinic, where early in a 72 hour EEG, 11 seizures were seen in the left temporal lobe and 1 in the right temporal lobe. At this time, Laser Ablation Surgery was in the trial stages and a lesion was being seen around the location of my seizures, on the left side. I agreed to be a part of the study. After having the laser surgery and removing the lesion of the left temporal lobe in Dec 2011, seizures still were occurring and a left temporal lobectomy was performed in May 2012. 

Assured we had cured the cause, when seizures once again came about, Physiological Non Epileptic Seizures was assumed to be the diagnosis because nothing out of the ordinary appeared on an EEG. Throughout all of this I tried all known AED's common, old and new to the drug market, etc., but with no luck. Being in the medical field, I pursued the testing and research more, especially feeling my muscles seize constantly. We later diagnosed all of this to be Stiff Man Syndrome. SMS is an Autoimmune Disease, it is also the cause of my Type 1 Diabetes and the reason neither surgery was fully successful for me- I have Autoimmune Epilepsy, caused by the imbalance of AntiGAD65. While learning all of this, an EEG came back showing seizures again and the questions arose about a VNS. 

With the lack of success from the past surgeries, I got on the Facebook E-Warriors website just to see if anyone else understood what I was going through. On there I met my best friend, a juvenile Epileptic, who was considering a VNS as well. Heidi had her VNS put in May 2014 and I had mine placed in July 2014, it was honestly one of the most successful surgeries for me. Having someone to lean on, that really knows what this life is like for us, that is something you can't put into words. We are 1,000's of miles away but the best support for each other. 

My Epileptologist and I are now treating my epilepsy with IVIG, Rituxan, Topamax and Fycompa. I have gotten my grand mal seizures down to almost only once yearly. Autoimmune Epilepsy is rare but we are learning as we go. I also am learning again too. With the control of my seizures, I have gone back to school for my PhD in Nursing. Epilepsy has knocked me down but it won't ever win. 

I'm in this fight for a cure!

Melissa Logan, APRN, WHNP

CURE epilepsy

Melissa Logan, APRN, WHNP

 

 

 
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