It’s kind of like having the flu all of the time

The usual extreme fatigue, nausea, and bit of dizziness have made their presence known. Mood swings made a few surprise guest appearances as well. The last time I checked, working on statistics homework doesn’t normally make people want to cry. An acute episode of confusion visited one afternoon as well, where I had absolutely no idea where I was on campus. I exited the same building that I leave after a class twice a week, and have been for the past two and a half months having no idea where on Earth I was.

It felt like a scene out of a movie almost in slow motion, and after standing there in a foggy daze of looking back and forth and checking my phone to see if I went somewhere for an appointment, etc., I remembered where I was. Overall, nothing out of the ordinary or unexpected that won’t level off with time has happened since starting the new meds. The biggest nuisance is the need for naps in-between classes/meetings. I emphasize need, because there is no choice. Without taking the time to come back to my room and snooze there’s just no way that I’m able to stay awake because of how much the meds knock me out. Even keeping my eyes open while walking and riding my bike has been difficult at times over the past week and a half. If I’m walking with friends, I’ll give my eyes a little break and close them for a few moments to get some extra rest. I’m serious. Regardless of these short-term symptoms with any seizure medication, at least with those that I’ve had experience with, the immediate side effects are always the most intense. I am completely willing to give this medication a fully adjusted chance of another three or four months to see if it’s able to bring my numbers down. I’ve had a ridiculous amount of seizures this semester currently totaling up to 10 as opposed to only 4 from last semester. I have a six-week check-up with Dr. Z in another month to discuss how this medication regimen is going for me as well.

These side effects have made attending classes very, very difficult to stay awake through, but I haven’t missed a single one yet. I’ve trudged through them, coffee in hand. Some days all I think about is how much I want to be in bed sleeping, and then other days I think about how grateful I am to be sitting there and able to be taking notes with my right hand thanks to these seizure meds.

I had two seizures over the two weeks, and .5mg of a Klonopin wafer knocked them out both times, and much quicker than 250mg of Keppra had in the past. There was typically a 10-15 minute waiting period before I felt that the Keppra had a full effect on calming the seizure down, but I felt a difference within five minutes with the wafer because it dissolves into the bloodstream right away.

A week ago was the first day in 7.5 years that some form of Keppra didn’t enter my body. That’s nuts! I haven’t noticed any difference without Keppra in my system over the past week, but I figure that it’s hard to notice what symptoms are missing when new ones are being added right now. Eliminating Keppra from my list of medications means no more spells of anger when taking extra pills for breakthrough seizures, and I am definitely a fan of that.

I’ve been walking around and sipping from a giant water bottle full of ginger tea bags which helps with the nausea. I forgot what this was going to be like. It’s hard. It’s kind of like having the flu all of the time. But it’ll be worth it.

Spikes

The 6th, 8th, 9th of November, and today have all been seizure spikes. I was too tired and dealing with residual symptoms to write about them until tonight. Each event lasted for up to an hour and a half before serious symptoms started to fully fade, but all left residual effects for days. My right pinky, pointer finger, and forearm remained weak and partially numb/heavy for most of this past week, which was very inconvenient because I had to writing a paper. Three or four seizures a week was a typical, sometimes even a “good” week for me five years ago. Now, more than three or four a month is off the charts.

Three big events in such a short time frame the week before last warranted a chat with my neurologist. I texted her to give me a call (Yes, we text each other!) to discus recent events when she had a minute, which ended being midnight her time. Some doctors work a strict 9 to 5 Monday – Friday and then fall off the grid. My doctor is on-call for her patients anytime, anywhere, any day of the week. She is incredible.

I went to the health center and had labs drawn to check my Keppra and Vimpat levels the week before last – the consensus is that there must not be enough of the two of them in my system, prompting these seizure spikes. There was a fax number mix-up getting the script to transfer out here from Michigan, but the script was eventually received. Now that the old levels are being checked out, my neurologist has added another 100mg of Vimpat. It has been a little over a week since the labs were drawn, but neither my neurologist’s office nor I have received any report in the mail yet. Being the über-patient that I am, I am going to stop by the health center on Monday and track down my results.

I don’t consider these seizures setbacks, but I definitely consider them obstacles. It’s tough keeping a positive attitude when dealing with something that most of my peers are typically unaware of, but I will continue to “dodge, dip, dive, duck, and dive” around anything thrown my way. I’m an underdog, and it’s my job to rise to the occasion. I do what I have to do to create as close to a level playing field as possible for myself.

chart snapshot

Symptoms are numbered 1-5 in order the of when they presented. Boxes are blank if symptoms did not present in those areas.

Here’s to improvement. The less seizures, the better. I’m awaiting the lab results and then we’ll go from there.