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. 

The Not-So-Excellent Side of Robert

Telling stories about Robert and his drive to spread awareness about epilepsy makes me happy.

A recent moment of "excellent"

Sharing Robert’s proclamation of just about everything as “excellent” makes me happy too.

Seeing Robert become angry and irritable, short-tempered and cranky with most everyone he comes in contact with lately (in your face puppies included) does not make me happy.

For as long as I can remember, Robert has had impulse control issues.  Whether it was “normal” boy and teen behavior or medication side-effects or even seizure side-effects, it’s hard to tell.  He had uncontrolled seizures (with incontinence) frequently.  Sometimes at home; sometimes at school. 

It would be enough to make anyone a little angry. 

He was on numerous medications which did little to control the seizures but did plenty to make him an angry and depressed teenager.

He continued into young adulthood with impulse control problems, poor decision making skills and, at times, aggression. It was bad enough and directed at me enough that I didn’t want to be around him and kept my distance for quite a while. 

Eventually, Robert met Judy, a woman who became his companion and love for many years.  They both had epilepsy, made sure each other took their medications and saw their doctors regularly. They attended church regularly and seemed very happy. Robert still lost his temper on occasion and Judy was known to be quite a hot-head herself but my concern about his anger was considerably less. 

After several years, when it finally became apparent to me and Other Brother that Robert could no longer live on his own (even with Judy), I moved him closer to me so I could more easily manage his care. 

His temper rarely showed itself at the Skilled Nursing Facility where he first resided.  He needed long-term IV antibiotics and the nurses and aides fell in love with him. He was polite, blessed everyone in sight and he was grateful for the food, activities and attention.

There’s nothing like being doted on to tame a temper.

I moved Robert to an Assisted Living Facility once he was done with his antibiotics.  It was a quaint place with little ole ladies and daily bingo with Milky Way bars as prizes.

Robert was certain he was the luckiest man on the planet.

Unfortunately, Judy realized Robert wasn’t going to move back with her and she told Robert she didn’t love him any longer (news she decided to break to Robert over the phone).

The guy was heartbroken! I warned the staff he would act out and, sure enough, he did.  There were a few instances of yelling at the staff but when I asked him about it he would tell me he “only thought that in my head.”

When Robert moved in with Richard and I he was occasionally stubborn but most of the time he was pleasant, declaring all my meals “excellent” (even the ones that start with “peanut butter” and end in “jelly”) and cracking himself up with non-stop jokes. 

Robert lost his temper with Taz, the Crazy Puppy, so we used a positive reinforcement method that involved Rocky Road ice cream and stickers on a calendar.

Taz grew up a bit and Robert tolerated his antics a bit more.  He still had an outburst or two which involved yelling at Taz but they dwindled to once a month or so. 

Recently, Robert tried a new medication but could only stay on it for a week.  It seemed to be making him weak, tired all the time and extremely irritable. 

I had to help him get clothes and briefs on and off as he could barely keep his eyes open. I couldn’t stand seeing him like that and the neurologist agreed he should go off the medication.

Robert has been off the medication for almost two weeks yet his walking is still labored, his legs are weak and he is still extremely irritable. 

He has yelled “shut up” more times in the past few weeks than in the entire time since I have taken over his care.  He isn’t even trying to tell me he “just thought it in my head.”  He is mad and doesn’t care if we know it. 

It takes a while for his brow to unfurrow and his eyes to soften after an outburst.  He eventually gets back to his joking ways in between the angry outbursts but it just isn’t quite the same. 

Last week, I used the Caregiving Daily Log to track how much Robert laughs. I intended to use it all day but by 10:45 that morning he had made himself laugh 18 times.  I thought that was a pretty good indication of how the day would go. I was delighted he was in a joking mood and I laughed along with him at his silly comments and jokes.

His jokes usually are of the “opposite day” variety: “I’ll eat breakfast in the bathroom. Only joking!” or “I won’t get up; only joking!”

I have heard these jokes numerous times before so don’t always laugh with him.  He, on the other hand, laughs quite heartily when he tells a joke. Probably the best part of his silly, oftentimes predicable jokes is seeing him crack himself up at his own jokes.  It makes me smile every time.

I hoped the day of the log was the beginning of his mood turning from sour back to pleasant. 

Unfortunately, that hasn’t proved to be the case.

Robert continues to tell me and Richard to “shut up.”  When I tell him to be polite, he changes it to, “please stop talking.”  Okay, Richard and I are both tempted to engage in an argument with Robert at times but if he is doing something unsafe (or more likely, unclean) or we are hurrying him for the bus in the morning then we will continue talking to him to get him to change his behavior or speed things up.  Up until recently, that did not bother Robert. 

Now we get “shut up” followed five minutes later by a joke.

It’s disconcerting and most certainly not excellent.

Sure, everyone can have the occasional bad mood but this seems more than that.  This seems to be . . . I don’t know.  I don’t want to think it’s a permanent shift in his personality.  Heck, I don’t even want to think this is a shift in his mood for another week. 

Fortunately, Robert has another appointment with his neurologist in just a couple of weeks.  I will talk with him to figure out what could be causing this mood swing and the irritability (not to mention the continued problems walking). 

I want to get to the bottom of this dark mood because I want Robert to find his excellent again.  I see glimmers of it but I want more of it back.

I suspect Robert wants his excellent back too. 

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.