MyGlitches Have Changed..So What Now?

Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a seteances out ouf order, or repeat them, spelling.

TODAY IS SUDEP AWARENESS DAY

HEADS UP MONTH OF NOVEMBER IS EPILEPSY AWARENESS MONTH

I was seen At Mayo On October 5th, But Hurricane came, delayed update.

I hae been with My Mayo nuerorologist for many years and blessed he has become like family. So truly it starts by him always checkiing on our boys, and how we have been, even asking about my folks. Then he asks me how I feel I have been doing, and anything new compared to last vist, and also Brent's observations. The reason he does this, is he wants to know what i have "felt", compared to see what shows up on my RNS data and my cognitive details. To make sure I am not being swyaed by anuthing that is shown, and at times there could be. smaller seisure that could have happened and stopped by RNS vs a "long episode" that was not stopped.I explained to him that to me I was feeling worse, fatigued during the day even with my reauired brain rest time, and was having a hard time even making it to my 2nd dosage of meds. Due to the rough late afternoons, it made for a tough evening of recovering for Brent to see. I wasn't sure if this was due to my menopause complicatioins or what it could be.

RNS NueroPace Engineer Enters Exam Room to Join DR. Feyissa

He began first by checking the drop attack we reported I had on August 19th at home(if you go back to blog on Aug 21ts, you can see what it looks like) Sure enough, it showed one, It had been a while since I had one of these. It usually has just been due to my BP dropping too low, as it is already low to start with. The report stated: "During some seizures, including an event on August 19, she has also experienced drop attacks. Interestingly, review of the corresponding PDMS data demonstrated a very brief left-sided electrographic seizure without propagation or further evolution to the contralateral hemisphere." So it stopped it, since it did not spread to the other brain hemisphere but tihs is still obviousbly bot safe for me, fortunately this time I was on the carpet.

The RNS Engineer went onto explain, the reason I have been feeling rough during the day, is my seizures have changed. Yes, I was still having my nocturnal siezures but not as often. Maybe the dreaded hot flashes have helped those....

Unfortunately; the report stated : "Previously, she would often remain seizure-free for 3–4 days and then experience clusters over 1–2 days. More recently, long episodes/electrographic seizures have been occurring nearly every day or every other day, typically once or twice per day. The events also appear to occur more frequently between approximately 2:00 and 4:00 p.m., in contrast to her prior pattern, when seizures occurred predominantly at night." For those who do not know,, when you experience a seizuer of any kind, recovery is not a short period of time. If you are having them daily, & trying to recover, you trul are never "recovered". Less recovery time also leads to more potential seizures, so it's a never ending cycle.

SURPRISE! MyGlitch came on during the appointment

While the Engineer was talking with Feyissa and my husband explaining the data, I was starting to feel "off" and Brent and Feyissa could tell I was hvaing an aura to a poteial MyGlitch to come on for the Engineer to see in person. What can I say it's never a dull moment during my appoiniments. The iming though, was duting what my data had been showing of when they have been occuring.

Described in report: "Near the end of today’s clinic visit, the patient abruptly developed severe chest pain accompanied by an abnormal taste sensation in her mouth, consistent with her typical seizure symptoms. She appeared visibly distressed and in pain but remained able to communicate and answer questions appropriately. We reviewed her ECoG data in real time, which demonstrated an electrographic seizure involving the bilateral hippocampal contacts. The electrographic seizure activity subsequently abated over the right hippocampal contacts but remained sustained for several minutes over the left hippocampal contacts." Also stated at end of report as: "Of note, we were able to monitor her RNS ECoG activity in real time during today’s visit when she developed her typical subjective symptoms of severe chest pain and an abnormal taste sensation lasting several minutes. These symptoms coincided with a recorded electrographic long episode, providing clear electroclinical correlation with her habitual events, as demonstrated in the ECoG tracing" So whicheber description makes sense to you:)

What was decided end of appointment for my next steps

First he scheduled me an appointment with Internal Medicine for Women's Health On November 2nd. To see if there is anything she feels I can add to ease my menapausal factors, to hopefully assist with reducuing my glitches reducing. Stay Tuned on that.

He also added the medication Zonisamide to my current meds. I began with 100mg in the morning and I start the added 100mg tonight. I was going to be going to be slowly going off Briviact, but we are holding off rt now. (since I have been feeling so rough)

To be honest Since we have been baack and the hurricane hit the same time my meds changed we have no idea if I am feeling daily worse due to meds or the weather. Storms are a trigger for me, plus being without power for 8 days in the heat is also an added factor.

When your husband reminds you off how you look, you know its bad, lol.

But you need a sense of humor.

MyGlitch wise It is rough but all things considered with the hurricane we came out much better than most. i will write more on our experience with that next post.

I did have a Glitch during cleaning up I guess out front, and lets just say the nieghbors freaked out......again shows how much awareness needs to be shared.

Please help our community out, anyway you can.