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Writer's pictureMarissa DeVaul Parmer
Dec 6, 20223 min read

The Porch light changed & the brain decided to have technical difficulty

Promised Continued Epilepsy Awareness all year long

I had planned a blog posting on December 1st and I told myself, at least 3 days a week at minimum to keep the conversation going. Due to the fact Epilepsy doesn't just occur during Epilepsy Awareness Month for many family's like ours.

Well by brain had other things in mind, and my body was feeling it as well. As one of the shirts states in my Glitch Gear store: "Experiencing Technical Difficulties GLITCH"

Epilepsy is humbling to someone who is strong willed and has always been competitive.

I had to listen to my brain that it needed rest, if I was going to be at least halfway ok for time with my husband. I was experiancing strong lower abdmonial pains, severe head pain, along with more nocturnal seizures. Well, Mayo confirmed it wasn't just in my mind.

Mayo called on the morning of December 2nd to see what kind of feelings I was having and how exhausted I was possibly feeling. Asked if I was at least able to meditate, stretch, do something light at least daily for the body and mind. The nurse informed me that my RNS was being extra active during my sleep and early hours of the day. Hence why I was feeling so yucky, and my body did need to rest. (as i mentioned before, the "Post-Ichtal Phase" of a seizure is actually at times is worse for the person experiancing the seizure.)

I am happy to report I was able to do meditation and stretch my muscles and relax them some and relax with music on the couch. Some times even had a 10 minute Yoga or core class in there, keeping up my 13 week streak of some time of workouts on my Peloton Ap. Definitely mind over body but being aware of having to adjust where needed. (like I said Epilepsy humbles a strong willed/competitive person. I needed to adjust workouts for being at my best and safety. I am better at this, but still hard to do.)

Mayo update

When the nurse called she was able to confirm dates for me to see if our schedule could fit. On December 27th, I will be going for some pre-procedure testing, but she did not have details yet on what those would be. I will also be having my WADA Testing done on January 3rd, also no further details then the date. This is a big step though, at least now we have dates, of when we will be hopefully getting more answers to why seizures are getting worse, and possible next options for us. (so stay tuned on that)

Shingles 2nd booster and flu vaccine shots on Sunday

I had Shingles if you remember, I said it was the worst imagined pain I have ever experienced! This is coming from a mother of 2 and one who has had 2 brain surgeries and multiple other testing. I was able to get approved to have the Shingles vaccine, but you wait 2-3 months for the 2nd booster to complete the vaccine.

The tech warned me the 2nd shot will feel almost like having shingles again but not quite as bad, and I am not able to lift any weights until Wednesday again. Well she wasn't kidding!! My BloodO2 levels were low and my HR was high, so I had to be careful. Let's just say IbProfen as she suggested to take has done absolutely nothing......but once again I promised myself some type of activity for my mental health. So walking around the house to Holiday music, stretching a bit, doing floor core work, but still had to hold back from my normal activity routine. (Trying to be smart, the pain in the arm was a good reminder LOL)

If there is anything you do daily, add this:

Always think of the below quotes for yourself on a daily basis.

It took me a long time to think like below and there are days,

I still have to remind myself. I truly do believe now that

our family was sent on this crazy "My Glitch Path" for a reason.


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