Oct 23, 20235 min read

Mayo Update Part 1

I hope all of you took a moment at some point this week to learn about SUDEP.

It was officially recognized this past Wednesday but it truly was all week. I didn't want to focus on myself when so many others have lost someone they love. I also preferred to share on my Twitter about SUDEP and educate others.

Yes, Mayo visits are not always what I want. I definitely don't enjoy getting my pic taken when I am alone. My husband wanted one with one of my new Team Parmer shirts which will be available soon to spread Epilepsy Awareness during Epilepsy Awareness month in November.

The Mayo Jacksonville, FL Mayo campus makes for a beautiful relaxing walk. I am also blessed to continue to have a caring and knowledgeable neurologist who if he feels he can't answer our questions, he is not afraid to ask a colleague and or Nuerospace.

We are always in his office for over an hour and answers anything we ask of him, even patients are waiting.(Sorry to those waiting but I am sure he is this with everyone, he is very caring) I always come with a prepared list of questions and he has some for us as well. He also asks whomever is with me what they observe about me and if anything has changed since my last visit or is it status quo. Then we review what my RNS data has shown compared to what my seizure log shows and what is observed by family.

A step back for those new to my seizure blog before I move forward.

I always encourage everyone to go back to day one when I began MyGlitch blog even though it isn't from the very start of my epilepsy journey as it was on FB originally. (no longer on there)

What I am all diagnosed with & being treated for:

Autoimmune associated, GAD65 antibody associated with drug resistant independent bi-temporal lobe epilepsy status with post RNS device on bitemporal lobe electrode placement in 2017 and battery replaced December 2019.

Seizures being both focal aware and non focal aware, independtelly on the left and right temporal lobes. Along with Absence seizures, and nocturnal. At times drop attacks.

PNES coexisting with epileptic attacks

Low blood pressure, causing syncope and in some cases related to the seizures

Fibromyalgia, cognitive issues, depression, anxiety, and OCD. Pre-menopause due to hysterectomy based on endomtresosis and ovarian cysts. Dense Breast with a cyst.

Medications I am currently on ONLY for my epilepsy: CST

6:30am Briviact 100mg, Lamotrigine 2 tabs at 25mg each, Lamotrigine 1 tab 100mg

1:00pm Briviact 100mg, Lamotrigine 2 tabs at 25mg each, Lamotrigine 1 tab 100mg

5:30pm XCOPRI 200mg tab and a 100mg tab

9:00pm Klonopin 1 tab .5mg

For Cluster seizures I take Lorazepam when needed & Ibprofen for pain

Mayo appointment brief summary.

I was sick during the month of September on medication which always triggers more seizures. The weather pressure along with storms also triggers them, both seemed to hate my brain that month. Only in the month of September I had 65 seizures on my left side and 10 on my right, all which the RNS engineer called "long episodes" . Many of these occurred between the time of 9pm-7am and between 11am-2pm.(EST, we live in CST) Now considering where my story started this is still much better, but this is also only what the device picked up. "Short episodes" are not tracked by the RNS device and or the PNES and or if they do not occur between the left and right temporal lobes. You have to remember it takes most people to recover 1-3 days from seizures and if you are having them during the day and at night you feel as if you are having them constantly, even if it isn't a "true seizure".

What was completed at visit and what is to come

The NeuroPace field engineer, had discussed my case with other engineers to see if we could use a different treatment algorithm to help reduce the seizure burden further, and the recommendation was such that we need to do lead to lead stimulation at the charge density of 2 microcoulomb/cm2. So we changed the therapy mode to 2-lead stimulation with a current of 4 milliamps, frequency of 125 Hz with a pulse width of 100 microseconds, burst duration of 100 milliseconds, and estimated charge density of 2 microcoulomb/cm2. That all lakes perfect sense right? think of my head like a car battery needing new voltage and charging options:)

Due to the large change on my RNS, we made no adjustments to my meds at this time.

We went on to discuss my doctor told me he said he knows both myself and my family are determined to make me feel physically and mentally better. He said I have known you a very long time and this was the first time he heard me say the word " fail" during my appointment more than once. He said you have always been stubborn and determined to do anything, I never want to hear those words again. My husband told him I am great at helping others but not myself and don't even realize how negative I talk about myself. Even though I meditate daily and exercise when possible, do chores, encourage our sons with positive affirmations in college, I am not positive on myself.

Due to my increasing of the change of my personality and not realizing it even happening, including cognitive decline, and pain occurring I am enrolling in the Mayo PRC program.

Details of my current daily changes until I go to the PRC, make sure to read on Wednesday. I will explain all the changes I am doing and will be doing to hopefully help my personal well-being and will in-turn decrease some of the seizures.

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