Tuesday, July 22, 2014

ONFI, Seizures and Cars

Let me just get this out of the way first--- ONFI SUCKS! Okay. Moving on.

I returned from working locally yesterday to a glum faced husband announcing it had been a tough day. Michael was sleeping upright on the couch. Barry related that Michael had a seizure at the gym in the morning. "A seizure? In the day? While awake? Was he climbing the wall?" All fired at him in rapid succession as I tried to control the urge to scream at the top of my lungs. I' m sure I managed to use the F word in some shape or form to vent my anger. "No, he was --- in between climbs--- so he fell on the floor, which is soft", he added. He went on to say the seizure was relatively short- a minute and a half, that he declined the gym attendants offers to call 911, that Michael recovered well meaning he was alert enough after the seizure stopped to stand up on his own and walk out of the gym.

A little bit of salt was added to the wound when they arrived home. Afternoon meds were taken as usual. Then Michael announced he was going to take some Advil because he had a headache. Fair enough. However, instead of Advil he took his nighttime meds. Hence the groggy, drugged up guy I saw at 4 pm.

I can 't lie. I panicked. We haven't had one of these seizures in over 5 years. I placed a call to Ray at ROC, then one to Michael's epileptologist (in that order). Ray was pretty certain it was the ONFI wean, later confirmed by the doctor and Cindy Mitchell who had pretty much broken it down to the day and hour the drug we started weaning a week ago Sunday would be out of his system, effecting a rebound seizure. This sounds so methodical and calm but trust that it was a flurry of texts, emails, Facebook messages and lots of hand wringing. What to do now?

This is our dilemma: Michael has achieved some degree of normalcy in his life. Though he has to be driven there he is able to attend classes at Cal State San Marcos and he is on a pathway to getting a degree in Mass Media. While he would like to take more than one or two courses a semester, the cumulative effect of 4 prescription seizure meds and nightly seizures during sleep prohibits him from doing so. Recently he took up rock climbing at a local gym. When he was more coherent last evening, bordering on fairly alert actually, he told me had some of his best climbs yesterday. No need to examine what was going through my head when I realized he could have been suspended mid wall.

Anyhow- so we want to maintain this degree of normalcy as we embark on our cannabinoid journey. I love the changes we have seen with THCA and look forward to adding CBD at some point in the future. We chose to wean ONFI because of the experiences of others. I wanted it gone or at a lower dose before we move to CBD. So---- what to do? We 've decided to add back that  ONFI dose and wait till the full dose of THCA kicks in, things have a chance to settle, and by that I mean we're back to a baseline of no daytime seizures, and then --- we'll try again.

What have we learned from this latest incident? Well--- I know that ROC is aptly named. I truly felt cared for and it was ---well--- comforting and reassuring. I know that Michael's epileptologist is fully supportive of our cannibinoid journey.She immediately placed the blame on benzo withdrawal and discussed WITH me, not talked TO me, about the next step. Some may feel we should have continued with the wean but I'm not willing to take the risk right now. Timing is everything, right? Now is not the time. But when we DO tackle this wean again, we'll be doing so using a pediatric suspension so we can go REALLY low and slow.

It's the day after. The sun is shining brightly. We are keeping  him "close" today as the neurologist advised. We are wounded , not beaten. We hit one of those "potholes in the road of life" my Dad used to talk about. Michael had two questions for me when he came downstairs a few moments ago: "When can we start the liquid ONFI? " Followed by, "IF not ONFI can we start weaning another drug?" And just now, "So yesterday probably eliminated a car in my future?"



  1. I can imagine how awful that was for you all -- to have not seen one in over five years. I didn't start weaning the Onfi until we saw a real positive reaction to CBD for Sophie, and then, as you know, we began the wean very, very slowly.

    Good luck, and if you want to talk more about it, call me or PM me on Facebook!