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Did You Know Mondays:Mayo Update

Updated: Jul 15, 2023

I Know It's Been A While

Thank you to everyone that has reached out to see how I have been, since my last blog. If you haven't read the latest, please do and check-out Sara Staggs book.

I took some time to be with my family as it has been rough, with seizures on and off due to our crazy weather which is a trigger for me. So when I have a good day, I took advantage of being with them. Then the next week, I took off to Mayo for a week and also spending time with my folks while there. I can never thank them enough and also my hubby. He drives me to Tallahassee and meets my dad there to then take me to Mayo, when he can't get off work. Exchanging of the precious package they say:)

Doctor/Patient Relationship Is Very Important

After many years of various doctors, and different locations I have been with my current Neurologist since 2012. When you have been with a doctor that long they can read you well and you can also read them. He always begins asking about my boys and when Brent isn't there asks about him as well, including my dad since my mom was with me this time. When a doctor remembers what your boys are currently doing when he has many other things going on, means a lot. So I could tell he was a bit off, and knew something was eating at him. Turned out my appointment was changed due to his mom being very ill and in CA, and he was out visiting her. You could see the emotion in his face and he was flying out to see her after my appointment, as she may not have much time. He reminded me to treasure my folks which knew I did. I tell you this only to please keep him in your thoughts/prayers, when reading this. It would mean a lot to me. Thank you!

OK Onto My Mayo Update

My last appointment, roughly 3 months ago we had decided to ween me off Klonopin over a month and see what happens. It was not an easy task, but I wanted to try and at least get off one med if possible. Needless to say prior to the appointment I knew I was not any better, and if I didn't kow it my family did. I am still having a pattern of 4 days on to 4 days off of seizure activity not being stopped by my RNS/meds. This means, I could be having more but the RNS is stopping them. This is why my body is so drained. My body is recovering or going through post-ichtal phase to just go right back to having them. The RNS engineer was there to make adjustments again to the RNS. I also had increased my nocturnal seizures, causing my days to be even rougher. My body was truly not sleeping. My longer seizures were occuring between 11pm-7amEST. I was also dealing with almost daily tremors in my right hand, and not having control of my legs.(possibly due to med withdraw, TBD) Wordfinding and cognivtive complications, still happening.

One thing going off the med, Brent noticed me having a change in personality and it was a fixation of a certain topic. I wouldn't even realize I asked things multiple times or had the same conversation. Otherwise known as OCD. I mentioned this to my doctor and he said well unfortunately with temporal lobe seizures and in the left side it is very common and it is something I can't control. He went on to say I was lucky it hadn't happened sooner due to me being uncontrolled for long, but all things I do daily held it off a bit. (make sure to read this Wednesday's blog to see how you can try and reduce daily OCD caused by seizures)

Next Steps For Me

1)The RNS Engineer is going to take my data back to NeuroPace and run it through their Artificial Intelligence. (this is something new they have)

2)Due to my drug resistant Focal Epilepsy(in my right and more in my left temporal lobes), Gad65 Anti-body-autoimmune epilepsy, nocturnal and drop attacks. I don't appear to have absence epilepsy anymore. I had blood taken that day to check my GAD65 and medication levels to check to make sure my meds are staying in my blood stream. Amongst other panels.

3)I will be going back to taking Klonopin at bedtime to try and decrease nocturnal

4)Take note of any PNES seizures occurring during the day as a result of uncontrolled epilepsy, common with my type and length of having seizures. Also, trying to relax my body when these happen with either music, meditation, and my family talking to me.

5)Keep up with daily seizure log, exercise, and daily Blood O2 levels along with HR when I feel off. Continue rest time, for at least an hour. Meditation when needed. Do my morning morning Wordle and various other brain games for my cognitive decline.

6)Blog when possible to help with brain function and connection with others, but also know when I need a break to not cause stress.

7)Lastly, OCD measures... check back on Wednesday to read details

Believe it or not, this is a shorten summary based on what he writes up after our visits.

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Unknown member
Jul 11, 2023

With all you have going on i am amazed by your ability to articulate everything in such a thoughtful and complete manner. You are clear and concise. That’s why this blog is so essential for you. It keeps your brain organized while keeping us informed. Hope today is a good one💜

Marissa DeVaul Parmer
Marissa DeVaul Parmer
Jul 11, 2023
Replying to

Thank you for your continued support and feedback on my blog. I hope others also begin to understand epilepsy better as you have. Not one person or family member lives with epilepsy the same. 💜❤️

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