Since I last posted, Jen did have one more small seizure and one aura. We also saw a seizure specialist at UCLA. I realize I probably haven't gone into much detail about Jen's seizures in the past so I thought I would do so now.
Jen had been seizure free for almost a year. Then, starting in the end of May of this year she had two minor ones and then the most recent one was in the beginning of July along with one additional aura. Jen still has had only one Grand Mal seizure. This occurred in the very beginning and is what led to the search for her diagnosis. A Grand Mal seizure (also referred to as Tonic-Clonic) is what everyone thinks of. It involves involuntary violent muscle convulsion and the loss of consciousness.
All of Jens's seizures since then would be what are classified as Simple Partial Motor seizures. She is fully awake and aware of the seizure. If you were in a room with her you might not even be aware it was happening unless it was one of her more pronounced episodes. Typically for Jen, these smaller seizures involve the twitching of her mouth and sometimes the inability to speak. Imagine a fish hook was in the corner of your mouth and someone kept tugging on it - this is what Jen's look like.
Jen also will sometimes get what is known as an aura. An aura is a perceptual disturbance that reflects the initial seizure discharge. They are like pre-seizures which also serve as a warning sign. Not all seizures are preceded by auras and not all auras lead to a seizure. During one of Jen's auras she will feel that something isn't quite right. She will feel "buzzy", like electricity is flowing through her brain. She also can feel dizzy and often has a sense of dread come over her. When she has an aura we try to get Jen to a safe position in case she were to have a full seizure. Sometimes, stopping any external stimuli (television, people talking, turning off lights) will help Jen to relax, close her eyes and focus on her breathing. We have found that sometimes this will help her to not go into a full seizure.
Jen's seizure specialist believes her most recent activity could be linked to the fact that earlier this year she began using an estrogen cream to help with her menopause symptoms. Even though, she informed her gynecologist that she had brain cancer and was on seizure medication, we were told that using this would be completely safe. Well, it turns out that it can decrease the effectiveness of seizure medications. She has since stopped using it, and has felt over all much better. She has not had another incident in over a month and we have not had to increase any of her seizure medications.
Jen's seizures are being triggered by the tumors in her head. If they grow, the seizures could get worse. If they were to ever shrink, perhaps we could reduce her meds, but it is possible they would still occur due to damage already done by the tumors. In addition to her medication, Jen's Ketogenic diet is also playing a role in helping to control her seizures. In fact, the Keto diet has been used for this very purpose for decades to help control children's seizures. Jen also uses CBD oil - a non psychoactive compound found in marijuana that has been shown to reduce seizures. It has also been shown to have an effect on tumor growth in several European studies. It is still hard to even study it in this country due to the onerous federal regulations that have been placed on it.
As many of you know, we live very close to a recent massive wildfire that occurred in the Los Angeles area. Although our home was never threatened, there were many days where we were surrounded by smoke. At times it looked like it was snowing due to the ash falling from the sky. I have included a picture taken from our front yard soon after the fire began.
And of course, being summer, Jen and I saw a few shows. We saw Peter Gabriel with Sting at the Hollywood Bowl with over a dozen of our friends. Most recently we discovered this amazing venue that has been in LA for 14 years without us even being aware. It is an intimate outdoor amphitheater that holds maybe 200 people. The venue and the show were pretty amazing. The band we saw was Dengue Fever.
Jen continues to do well. Just living life - enjoying the days.
