The Not So Super Super Bowl

Robert’s neurologist convinced me to increase his Trileptal in order to stop the seizure clusters.  He is now at the same dose he was last year when I had to make the difficult decision to pull him off of it.

My nachos were good but didn't
look anything like this

Yes, it almost completely stops the seizures but the price is Robert’s “excellent” goes out the window with it. 

It was heartbreaking to choose between the two yet I decided to give it another shot because of the change in Robert’s seizure pattern.  Robert’s seizure clusters have been horrific: dozens in a day will strike without warning.  There is no consistent trigger, nothing. 

The neurologist had told us to increase his emergency medication (Ativan/Lorazepam) which has helped stop the clusters once they start.  However, this doesn’t help them from starting.

The long-range plan is to consider him for the NeuroPace device (that review process is starting this month) but he needs a more immediate solution for the seizures. 

At the most recent neurology appointment, we discussed different meds that Robert has not tried (there are only a few left to try).  I am hesitant to try new meds because of the awful side-effects associated with each and every one of them.  We settled on increasing his Trileptal since it does bring some success.  I insisted the reason we changed the dosage last year was because of his awful mood swings and temperament while he is on it. The neurologist said the medication should not have any effect on Robert's mood.  

The low dose he continued on seemed to help a little with the seizures without affecting his mood.  We kept him on this dose until the seizures changed and he started having clusters of four, five then dozens. 

Obviously, something had to be done.

We increased the evening dose and I watched to see if Robert’s excellent attitude disappeared. 

He seemed okay.  Sometimes he would get cranky but not enough to warrant reducing the dose.

Unfortunately, the clusters continued.

I reluctantly agreed to increase the morning dose as well. The neurologist said the Trileptal should not affect mood.  The side-effects of Trileptal do not list mood changes as a potential problem.  He is on a very mild dose of it. We discussed the possibility of other things going on last year that caused his crankiness and loss of mobility.  He now has a Parkinsonism diagnosis so maybe that was already working on him.

His mood should not be affected by the Trileptal.

But it is. 

It has only been two weeks since we increased the morning dose but I have already seen an uptick in his crankiness, moodiness and ability to cooperate. His mobility takes a hit as well (his walking becomes even less steady than normal) and his risk of falling increases.

Today was the worst he’s been.

I saw it coming too which put me on pins and needles this weekend.  Robert is sometimes excessively giddy.  He laughs at everything, jokes incessantly (as if his brain is in a loop) and is in hyper-speed to eat, dress and walk. He even gets a little shaky in his voice and his body. 

I don’t like giddy.  I know it means he either has a cluster of seizures coming or a long seizure about to strike.  Robert was Giddy with a capital “G” this entire weekend.

I knew what was coming. 

What’s odd is the seizures didn’t come but his mood swing sure did.  By Sunday afternoon, he was not cooperative; he was argumentative with me and Richard and he was easily upset with the puppy. We watched the Super Bowl together and had nachos and veggies with dip and fruit and all kinds of snacks which Robert ate in his recliner (the television is in the room with the recliner). The game was on and the dogs were milling about, sniffing all the glorious smells (of course).  Robert didn’t like any loud noises we made (so much for cheering at the game or booing the commercials) and he certainly didn’t like Taz sniffing his food or hanging around his feet.  He yelled, swatted and kicked at Taz numerous times.

Richard and I both tried different tactics (let’s move to the dining room table; let’s keep Taz out of his way; let’s stop eating so much food), only to lose our patience at various times of the day.

It was no Super Bowl brawl but it was not pretty. 

I told Robert he needed to change his behavior because it was not good.  Every time I said that Robert would apologize.

Then it would happen all over again.

It was an endless loop of hostility mixed with the mound of nachos sitting in my stomach.

I don’t recommend it.

I made Robert go to bed early (as early as I could, considering his bedtime is already 8:00 p.m.). Because we kept stopping the game to deal with the behavior, the game ended at 7:30ish for us.

While Robert was making one last stop in the bathroom, I went to his medication containers and reduced the Trileptal morning dose to what it was two weeks ago. 

Now I wonder if the price of the return of “excellent” will be more seizure clusters.

I don’t know what is worse: seeing Robert lose his excellent or seeing Robert lose himself to seizures.

It’s a ridiculously difficult and heartbreaking dilemma.

Again. 

New Medication – Take Two

The decision to take Robert off of Trileptal (Oxcarbazepine) was very difficult.  It felt as if I was saying, “Why no, Robert, you can NOT have seizure control.” 

Robert has tried his entire life to achieve seizure control.  Our parents did what they could in order to reach that goal when he was a child.  When Robert lived on his own, he signed up for any and all drug trials possible (by this time, against our dad’s wishes).  He volunteered to be in a study for the Vagas Nerve Stimulator and the Deep Brain Stimulator. 

The Deep Brain Stimulator did seem to work for him (and we found out later he was in the group that had the device “on”) but he developed a life-threatening infection and they had to remove it through emergency surgery.

When I took over Robert’s care, I heard him pray at dinner for God to allow him to not have seizures any more.

Then I heard him pray this again and again and again. 

Every day Robert has seizures.  Many times, multiple seizures a day and the seizures have increased in frequency over the last several months.  Robert does not usually realize when he has had a seizure (although he sometimes does and tells me he was able to fight it off.).  I found out pretty quickly that he gets agitated when I tell him he had a seizure.  He would argue that he didn’t have one. 

“I know for a fact I didn’t have a seizure” was the phrase I heard before realizing how much it was upsetting him to know he continued to have seizures. 

I don’t tell him anymore but I keep a detailed log of the seizures.  The only awkward part of this “don’t ask, don’t tell” policy is when we are in the neurologist’s office and Robert is asked how he is doing.  Robert replies, “I haven’t had any seizures” and I have to discreetly hand the several page log to the doctor. 

Robert then will usually fall asleep and the neurologist and I can discuss any possible treatments for his worsening seizures without upsetting Robert.

One of these treatments was Trileptal.  For the starting dose, it was 300 mg twice a day.

Robert had 100% seizure control for several days in a row. 

I would have been jumping for joy if he also wasn’t practically comatose – sleeping constantly, difficulty walking and being extremely irritable and angry when he was awake.

So no, Robert, the seizure control you pray for every night happened but at a cost too high.

Now we are trying again but at half the original dose.  (I have to thank readers here and on the Robert’s Sister Facebook page for suggesting it.)

The neurology appointment was just over a week ago and I wanted to wait until the weekend to start the medication at the lower dose.  The week was full of chaos due to my mom-in-law breaking her femur and Robert on the edge of the pneumonia cliff (he’s off the antibiotics and the cough has returned) so thought it best for “life” to settle down before starting the new med.

Sunday night was the first dose.

By yesterday, he woke up extremely tired and slow and needed a lot of assistance dressing. That could be attributed to still coughing at night or staying up past bedtime to finish one of his puzzles (it happens). 

This morning, he was again sleepy and slow and just the slightest bit obstinate.  Walking seemed to be a challenge but, again, he could just be sleepy.

He has had one seizure since starting the new med and that happened this morning.  We’re watching him like a hawk and just keeping routines the same and working at earlier bedtimes.

If the medication doesn’t work out this time, there is another one the doctor wants to try and then there is the RNS.  Robert’s neurologist has mentioned it, said it recently was approved by the FDA and he has even requested it already.  The RNS would be available for Robert by late summer so we have a little bit of time to try other medications first.

Why, when Robert is almost 49 years old without seizure control and exhibiting the devastating effects of that, do we still try these new treatments?

My answer is simple: Robert is not giving up on his prayers and I don’t want to give up hope.

Changing Medication: At What Cost?

Every now and then Robert’s neurologist wants to try a new medication.  Robert is on a litany of drugs right now yet his seizures remain uncontrolled.  Over the past few months, Robert’s seizures have been coming in clusters and have been more frequent. 

Robert - happy and doing what he loves

I have not been a fan of changing his medications even though his seizures are uncontrolled.  That may sound terrible and irresponsible but medication changes have caused horrific problems for him in the past.  Anyone with epilepsy can attest to the often frustrating experience of trying new medications and having physical and psychological side-effects from them.

As a teenager and young adult, Robert tried numerous medications which altered his personality in awful, unforgiving ways leading to a suicide attempt, depression, anger and aggression.

Even a seemingly innocuous tinkering of medications can have consequences. When Robert moved into New Home a few years ago, they decided to change the times his medications were given which threw him into a horrible, downward spiral of numerous seizures. 

Before that, his neurologist tried a new drug that was supposed to work wonders (and does for many people) but that permanently damaged his balance requiring him to use a walker ever since. Not to mention it not having any effect on his seizures.

So, yes, I am a little gun shy when it comes to trying a new medication or changing the dispense time of his medications.

Robert’s seizures were relentless in February. Seizure clusters, longer seizures, falls – scary falls – more than 60 seizures according to our seizure log which is double Robert’s baseline.

At Robert’s most recent neurology appointment, the neurologist again suggested trying a new medication.  He is sympathetic to my reluctance but after our February, I was ready to try something new to help stop or reduce these seizures.

Robert was put on a low dose of Trileptal. With all drugs, some work wonders for people and others are ineffective.  Robert started on the new medication on a Thursday evening. He had a seizure Friday morning at Day Program.  When he came home from Program on Friday, he was extremely tired and sluggish.  He was dragging his right leg more than usual.

On Saturday, Robert spent the day at a care facility, which had been pre-planned.  He was still having difficulty walking but I knew the ladies at the facility love Robert and dote on him so was confident he would be safe.  He had a wonderful day being spoiled.

By Sunday, Robert was having real trouble walking and was argumentative and obstinate. However, his cough was worse too and he felt warm to the touch (although, he didn’t have a fever) so I was concerned pneumonia was working on him again. When he gets pneumonia, he has similar symptoms: walking is difficult and he is cranky.

He also hadn’t had a seizure since Friday morning at Day Program.

While I was quite amazed he hadn’t had a seizure, I was also very concerned not only about an impending hospitalization for pneumonia but also about the new medication being the cause of these symptoms.  We had Robert take it easy on Sunday which wasn’t difficult since he was constantly falling asleep (and then getting upset with us if we mentioned it).   

On Monday I took him to the doctor. His walking was so labored that I used the clinic’s wheelchair to get him into the building. His doctor did a chest x-ray and listened to his lungs.  All clear. He also did blood work and a urinalysis to check for infection and toxicity from the Trileptal.

I called his neurologist to report all these new problems and expressed my concern about the scheduled plan to double the dose within a few days. After trading calls with the nurse practitioner and having to wait until she spoke to the neurologist, I was to keep him on the medication. I was hoping Robert would get used to the medication and get back to his normal, able-to-walk, awake, cheery self. After all, he still hadn’t had a seizure.

By Tuesday, the neurologist had given me the green light to stop the medication. His concern was that Robert was reacting poorly to such a low dose of medication and because of that probably wouldn’t adjust to it.

But he hasn’t had a seizure!

I weighed the benefits of the medication with his tiredness, difficulty walking and his sour mood. I held out hope that he would adjust to this new medication which was somehow working to stop the seizures.

When trying a new medication, there is not only the concern about whether or not they will work and the effects they have on a person but also an overriding hope they will work.  There is one thing epilepsy cannot take from us: hope.  Hope that a new medication or treatment will work. 

At dinner on Tuesday, I decided to ask Robert how he felt with the new med. This is always a crap-shoot because he is such a terrible self-reporter.  Even in the ICU, he answers “excellent” to the question of “how are you feeling?”

I grilled him:

Of course, he replied, "Excellent."

I thought if I asked more detailed questions, I might be able to get a more detailed answer: 

Me: "Do you feel wobbly?"

Robert: "No."

Me.: "Do you feel dizzy?"

Robert: "No."

Me: "Are you having trouble walking?"

Robert: "No." 

Me: "Are you having trouble thinking?"

Robert: Pause. "I don't think so."

The look on his face told me he thought I was having trouble thinking by asking him all these silly questions. 

I gave him the medication that night and the next morning but on Wednesday, he told a staff member at Day Program that he was feeling dizzy.

That tipped the scale for me.  Robert doesn’t admit these things lightly.

The last time he took the med was Wednesday morning.  By last night, he was more alert, a little steadier and much more jovial.  I asked him at dinner if he was feeling any different than when he was taking the medication. He said he felt excellent (of course).  Then he said he had felt dizzy and grumpy but that he felt better now. 

I was shocked he was admitting to how he had felt and stressed the importance of telling me when he didn’t feel like himself (I never miss an opportunity for a lecture lesson).

He is slowly getting his balance back, he is not near as groggy and slow as he was and his sense of humor and light spirit is returning. 

He also had a seizure this morning.  My heart sank a little bit when it happened and I had to write the seizure in his log – the first one of the month which is highly unusual this far in.

I won’t give up trying to find the right solution for him. In the meantime, our Robert is back and able to stay awake long enough to enjoy the life he has.