Another Medication Change

For someone who proclaims to loathe medication changes, I allow a surprising number of them.

One of two containers we use for meds for the week

A year ago, Robert’s seizure activity changed. He went from having one or two a day to having one or two a day and then having dozens every couple of weeks.  These clusters of seizures are scary since there is no telling when they will stop.  We use Ativan (also known as Lorazepam) to stop the seizures and have steadily increased his dose during these clusters.  We are supposed to max out at 4 mg per day but I have on rare occasions given Robert as many as 6 mg by the end of the day.  (I always check his vitals before and after doing so and always notify his neurologist of these clusters.)

Months before the clusters, the neurologist added Trileptal to Robert’s bucket of meds and after much trial and error with the dose finally settled on 150 mg in the morning and 300 mg in the evening.  It is a very low dose but anything more than this makes Robert irritable, grumpy and unhappy. 

Robert’s seizures continued to change over the past year with us seeing clusters of seizures every couple of weeks but days could by without any seizures.  The seizure activity increased significantly throughout the winter and the neurologist suggested the seizures could be “seasonal.”  In Robert’s case, much worse in the winter than in the spring and summer.  This seemed to be the pattern over the last couple of years and with another winter coming, the steady increase in Robert’s ammonia level as well (from years of being on Depakote), we discussed another medication change.

Robert before an early bedtime

Ugh!

Robert and I usually see the physician’s assistant when we go for the quarterly check-ups.  Julie is wonderful and smart and spends as much time with us as we need.  I am satisfied that she consults with the neurologist about any changes in Robert’s health and care and, frankly, she’s much easier to talk to than Robert’s neurologist. (Robert actually has two neurologists: one for his epilepsy and one for the movement disorder. The Epileptologist is the one that is great but not as easy to talk to as the other.)

At Robert’s most recent appointment, Julie and I had a long discussion about the high ammonia levels and recent seizure activity.  Robert slept through most of the meeting which caused Julie much concern.  The sleepiness is caused from his ammonia level being way too high (it is over 100 and normal is under 30).  Julie and I also talked about our concerns that winter is coming and the seizure activity is likely to increase.

Julie suggested a plan to decrease the Depakote and add a fairly newly FDA approved drug (Fycompa). 

As much as I hated the thought of going through another medication change, I knew we had to try.  The seizures last November alone numbered over a hundred – I do not want Robert (or us) to go through that again.  Plus, the ammonia level really is way, way too high.  Robert is already maxed out on Levocarnitine to help reduce that and we had a horrid experience with Lactulose so I won’t try that again.  Reducing the Depakote is the remaining, logical answer. 

Except Julie asked me an interesting question: of all the medications Robert is on, which one do I think provides the best seizure control?  My answer: Depakote and Clonazepam. 

Yep.  This is going to be tricky. 

After the appointment we had to wait a few weeks to get an approval for the Fycompa.  Once that was authorized, we added a very low dose (2 mg) of Fycompa at bedtime and also decreased the morning dose of Depakote by half.  After a week, we increased the Fycompa to 4 mg at bedtime, keeping the Depakote at the same lower dose. 

It has been just over a week since starting the new medication regimen.  We do see some side-effects of the new med such as sluggishness, being off-balance and an ever so slight uptick in irritability. 

We also have seen an increase of seizures over the last week which just proves my theory that Depakote is one of the meds providing the best seizure control for him.  We can’t have such high ammonia levels, however, so we are continuing with the new medication.  I am hoping the Fycompa will “catch up” and get the seizures better under control, particularly since winter is coming (I realize I sound like Jon Snow).

Taz attempts a selfie

What I have realized about these medication changes is that while I don’t like them and they don’t always work out, they are not the center of our universe. 

Robert still enjoys going to Day Program;

Richard still works on his water conservation efforts;

I still post silly pictures of my puppy (who is going on three!);

We all still participated in a caregiving study;

In other words, life goes on whether it is with new medications, seizures, mood swings or drowsiness. 

I may loath the medication changes but I am willing to give them a try in order to give Robert a shot at reduced or (gasp!) zero seizures. 

Yep.  Hope always wins. 

Ending the New Medication Experiment

At least Robert is happy when he's eating!

We have been trying the “new” seizure medication, in varying dosages, since February.  Robert’s neurologist thought we should try Trileptal so, in February, started him on 300 mg in the morning and evening.

After a week, we had to give it up. 

He was dizzy, cranky and could barely walk straight. Oh but it was heartbreaking because the seizures had stopped!

I didn’t want to give up so quickly so at the next neurology appointment, the doctor and I decided we could start it up again at a much slower pace.  We started out with Robert getting 150 mg in the morning and 150 mg in the evening. 

We kept him on this dosage for three weeks. Robert was cranky again and having a bit of difficulty walking but it wasn’t near as bad as the side-effects while on the higher dose.  The seizures weren’t completely gone but the frequency had been reduced significantly.

After about three weeks there were more seizures. More seizures but his moodiness was better and his walking had improved.  With the doctor’s approval, I increased the Trileptal again.  This time we went to 150 mg in the morning and 300 mg in the evening.  Richard and I thought if he had the stronger dose in the evening the side-effects wouldn’t be so bad.

It was a really, really good theory.

We have kept Robert on the 150/300 regimen for over a month.

Robert’s balance and inability to walk continued to get worse. There were times it actually seemed like he was getting better and the side-effects weren’t that bad but after looking at the log we keep, that just wasn’t the case.

The reality is he can barely move his legs in the morning. It is routine now for me to help him out of bed in the morning since he can’t get his legs working properly. Once he is up, he swerves with his walker with his right leg usually a few steps behind the rest of him and his walker pushed out as far as his arms can reach. No amount of coaching can get his legs and arms and brain working in unison or even staying in the same zip code.

Robert’s moodiness also continued.  Robert has always had angry outbursts (one time when he lived in an assisted living facility he yelled for the nurse to “go to hell.” When I talked to him about it he insisted he just said that in his head and certainly wouldn’t say that out loud!)

Those outbursts are infrequent.  Now they are an almost daily occurrence.  Robert gets angry at anyone and everyone – us, the transport drivers, the Day Program staff, the respite staff and the dogs.  He is hypersensitive to everything: noise, water temperature – even his gums are sensitive.

Day Program called to tell me that they are concerned about Robert’s safety. They have to occasionally put him in a wheelchair because of his fall risk but now he is arguing about having to sit in a wheelchair.

In addition to all of this, Robert developed excessive saliva which was not helping his congestion problem. He even choked a few times on it! Yikes!

It seems so obvious that we shouldn’t subject him to this medication with these awful side-effects but I kept thinking there were other reasons for these behaviors.  Maybe it’s the bronchitis he keeps getting; maybe it’s all the turmoil of the house upgrades; maybe his swallow problem is getting worse. Maybe he has some other problem going on that is unrelated to the medication.

It actually wasn’t so obvious with all these “maybes” swirling in my head.  Plus, it is hard to dismiss the fact the medication is working to reduce his seizures.

His seizures have dropped from a high of 59 in February to 54 in March, 40 in April and 20 in May. Oh my god!  He is having a third of the seizures he had before starting on the medication. A third!!

It is only because of this that I kept Robert on Trileptal for this long. I kept thinking the side-effects would wear off.  That we would see the “old” Robert and he would be able to move from room to room with some wobbliness but not what we’re seeing now.  That once the house was back to normal and his congestion cleared up we would see his mood improve and his ability to walk come back.

I wanted to be sure we gave this medication enough of a shot before saying, “Nope. It’s just not worth the cost.” 

I finally think we did. 

I have come to the conclusion we have to take him off this medication. I have a message in to the neurologist so he can tell me how long I should take to wean him off the meds. In the meantime, I reduced the dose back to 150/150.

We gave this a shot.  A really good shot but it’s doing more harm than good.  We have to give up on this medication. I hate to quit or give up on anything but I know it’s the right thing to do.

I still have faith we will find something that works but I am not looking forward to increased seizures in the meantime. 

Finding the Sweet Spot

I’m not much of a baseball person. 

Okay, okay, I will wait while the gasps die down out here in SF Giants territory. 

Oh sure, when Giants fever was consuming my office I was a fan. I mean who couldn’t fall in love with Timmy Lincecum, Pablo Sandoval, Brian “The Beard” Wilson or Buster Posey (my personal favorite)?

Of course I loved going to the softball games of my niece (who is a die-hard Yankees fan, despite living in the Bay Area).  Attending my step-son’s baseball games while Richard coached was great fun for me and the girls because we would pull up a few chairs, grab some giant salted pretzels (or a hot dog for one daughter) from the snack shack and then somehow maneuver mustard onto the pretzel and relish onto the dog while sitting in the blazing sun.

Just getting situated with the food was enough to eat up a few innings.

Growing up, Mom and I would take Robert (he was called “Robbie” then) to Other Brother’s baseball games.  Mom and I would sit in the car while we let Robbie run wild. Oh, and he did. During one game, he got stuck in a mud puddle.  Yep – he even lost his shoes because he couldn’t get out.  The thought crossed my mind that he might not make it out. 

I’m pretty sure the game continued while the mud drama unfolded.

Mom and I would joke about Other Brother standing in the outfield with his gloved hand on his hip, elbow sticking out and knees bent with a hat tipped down to block the sun and a serious look crossing his face.  He looks like a teapot, Mom would say.

Mom and I loved watching "our teapot" and I have loved watching my niece and step-son play the sport. So while I am not much of a baseball person I certainly love and support those who do.

I asked Other Brother once we were grown and entrenched in our careers and families what his dream job would have been.

“Professional baseball player,” was his quick reply.

The image of his teapot stance in the outfield of Candlestick Park delighted me.

Years later I find myself using a baseball term: finding the sweet spot.  That’s where I am right now – trying to find the sweet spot with Robert’s new medication and keeping his congestion under control.

(Full disclosure: I’ve been thinking about this term and how elusive it seems to be but had to look it up to figure out exactly what it meant. I thought it was the strike zone but, apparently, it’s the part of the bat that helps the ball go the furthest. I’m sure my baseball-loving readers will correct me if that’s not correct).

It felt like Sunday we had hit the sweet spot.

Robert had been on a very, very low dose of his new medication (Trileptal) for a few weeks and the moodiness, balance issues and drowsiness had worn off.  The effectiveness of the medication had started to wear off, too, so the seizures were returning. We slightly increased his Trileptal which stopped the seizures cold but hadn’t yet affected his mood or balance. By Sunday night it dawned on me that he had gone all weekend without a seizure.

All weekend!!

I couldn’t believe it so checked the log and there weren’t any entries since Friday morning.  Could this medication really be the answer?  If we could just keep the side-effects at bay. . .

Robert slept in very late on Sunday, woke up in a great mood, was joking around and declaring every meal “delicious.” His congestion was still pretty bad but he hadn’t had a seizure in two days and he seemed really happy!  Robert even proudly declared that he hadn’t had a seizure in a long time.  

We hit the sweet spot! (Or as close to it as we can get.)

It didn’t actually last very long – Robert’s seizures returned (although not with the vengeance he’s had the past few months).  With the increase in medication, it took just a few days for there to be an increase in his irritability, unsteadiness and drowsiness.  The congestion has been keeping him up with coughing and throwing up (which doesn’t help his sleepiness and grouchy mood).

I suppose that’s what happens in baseball too. Home runs don’t happen with every “at bat” but remembering the time you hit the ball just right on that sweet spot is enough to keep you coming back to the plate, hitting and trying and practicing time and time again.

That’s what we’re doing: we keep trying.  We keep working; we keep practicing.

We keep trying to find that sweet spot again.