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.
Springing Forward
Think how you feel when you lose a hour of sleep, usually tired,right? Now imagine living with Epilepsy(or any chronic illness) that is directly effected by sleep changes while having to adjust medications. Many, like myself takes at least a week if not more to have your brain/body adjust to this and most of the time seizures increase. I encourage you to go back and read my post on November 9, 2023 to learn more in detail.
Mayo Appointment on March 3rd Updates
We knew going in I hadn't feeling very well but we couldn't tell if it was due to my seizure meds chancging, seizures, or the many other factors right now. I live with Fibromalgia, IBS, auto-immune GAD 65, anxiety, depression, and now dealing with a Gastro Health testing(which also added medications), full blown Menapause(with unable to take hormonal replavments), weather changes, eye site changes, and or were they PNES seizures. Go back & read December 12, 2023 from Brent to learn more about PNES.
The one encounter was taking a fall, just after taking my 8:30pm epilepsy meds. But we didn't know at the time was it my syncope spells(my blood pressure has always been low), causing a drop attack/blacking out. One thing we also had been nticing anytime I was feeling "not right", my BloodO2 levels were dropping very low and my heart rate would jump up. It turned out the fall was an actual seizure, and the days I recored my chest pains along with the BloodO2/HR changes were all seizures.
My cognitive skills had also been continuing to get worse, forgeting conversations that even just happened, word finding complications, as well as important memories all gone. Even though I was using various techniques to imptove all of these.(mentally & physically)
Back in November 2024 at my last Mayo visit, my med levels were Toxic Levels.This had also caused me to lose too much weight, which made my dr very concerned. Due to this, we were going to ween me off XCOPRI along with Klonopin. These two meds would be replaced by Clobazapam(Onfi) which is a newer med working well for those living with umcontrolled seizures. The problem that did occur was I had to scale back the new med to a lower dose as, I could barely stay awake let alone function normally. We also changed all my medications to be taken 12 hours apart, in place of taking them various times through the day.
During my appointment, I felt a chest pain come on and felt off. The Nueropace Engineer held the device quickly to take a measure. Sure enough I had a seizure but this time it was from my right temporal lobe and before these were pretty much in control, it had been my left temporal lobe that were worse. This was a Focal Aware Seizure.
Discussion of next steps based on what we saw, my RNS data readings
My RNS data showed I was more actively having seizures between the hours of 3-8:30pm CST roughly every 3 days, along with the seizures being longer in length causing seizure clusters. February was also stronger than January seizures. The shorter the seizure, the less it is observed. My nocturnal seizures(these happen anytime youre asleep, doesn't matter if it is day or night) were about the same, but at least they were not worse. Recovering from a seizure at times can be worse then the actual seizure, so to me I was never feeling 100%. Due to this we increased my morning dose of Clobazam(Onfi), kept my Briviact, and Lamotrigine the same. We hope by increasing that med my seizures will become more controlled, and be able to make it until the next doasge. The RNS, no higher frequency but longer duration given. Back to logging anything that feels not right, scan the magnet over my RNS, keep my dr updated on if I can controll increased dose, and how is my cognitive. I have to also track if my Gastro Health meds, and testing are increasing the siezures and also my menapuase.
Now we wait, with HOPE
Another Lego completed as part of my cohnitive skills of improvemnt.
It might have taken a few tries, as we do not know
but my brain at times reads things backwards.
Thank you Bryce for assisting takeing it back apart to start over:)
I am proud to say I didn't give up.
A nice Spring Orchid to display.
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