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.

Choosing Pain or Taking a Risk

Richard survived the unintended Fentanyl overdose and was released on Friday - our 16^th anniversary and Robert’s birthday.  It certainly was a day to celebrate!

What a difference a year can make.

 

Dinner in Rome - 2012

A year ago, we were in Rome and then on a cruise to France, Spain and Italy again. It was the trip of a lifetime (after a year, I can forget about the pain Richard was in after the flights, the lost luggage and all the extra activity).

No, this year my husband was lying in ICU because his doctor inadvertently filled his abdomen (instead of his subcutaneous intrathecal pain pump) with 40 ml of Fentanyl.

Yes, 40 ml.

Richard not only has the pain pump but has the “big boy.” I talked to the doctor in charge of the clinic (the one who has his name on the door) and he explained what happened called a “pocket fill.”  It’s rare, he said, and has happened twice since he started using the pumps.

After doing research and friends sending me information, this is apparently a known risk for these devices and there is a recall on them. The company doesn’t recommend removing them but developed extra precautions to reduce the risk of the pocket fills.

Note to company: they didn’t work (although I have no idea if the doctor even followed these “extra precautions”).

Last week Richard was going through extreme withdrawals and was miserable. We knew what would come next – the pain.  Since the pump refill didn’t actually happen, his pump doesn’t have any medication in it. 

This thing, as mad as I am about this ordeal right now, has changed Richard’s life. Before the pump, he had to control his pain with extreme amounts of strong oral narcotics.

He couldn’t drive; he had wild mood swings; he was grumpy and when he wasn’t grumpy, he was sleeping.

Good times.

A decade later, he still talks about not ever wanting to put the kids or me through that again. To him, he is secondary in the equation. He would love to be out of pain but, more than that, he doesn’t want to be that person again with his family.

I tell him that it is okay, that period of our life is behind us. The kids and I all understand what was happening. It was difficult but it’s over.

Now the pain is back. Extreme pain. Debilitating pain that stops him in his tracks and has my husband in tears.

The pump is not functioning and he is feeling the full effects of life without it. He cannot get comfortable; he cannot sleep yet he can barely get out of bed.  He cannot do much of anything except try to relieve his pain with a heating pad, heat wraps, a TENS unit, some Advil and a few of his Hydrocodone.

He has lay down in a tub of warm water; showered several times so the warm water can ease the pain.

Richard is usually boisterous and loud with an inner monologue that has no understanding of the concept of “inner.”

Now he is quiet.

He speaks softly and not often.

This is not my husband.

Unfortunately, we have not yet been able to find a different doctor who works on these pumps or who might have a different pain solution for him. Richard has to choose between living with this pain while we search for a new doctor or go back to the same pain clinic that put him in the ICU.

The lead doctor was not the one who overdosed Richard so Richard has agreed to return to the clinic but only having the lead doctor work on his pump (“routine” refills and everything). 

We had suspected the pump was malfunctioning before all of this and have been pushing for months to get that figured out. Richard was experiencing achy joints and all sorts of ailments (many symptoms of withdrawal) so the doctor suggests an MRI dye study to view the pump and see if it is working.

That is scheduled for Wednesday at 6:30 a.m. Because we have Robert, Richard’s mom will take Richard to the appointment and I will finish getting Robert ready for Day Program and then meet them at the clinic.

Richard has to be put under anesthesia for the dye study so he needs someone with him all day. I’ve taken the day off from work but I suspect his mom won’t leave his side until he wakes up.

This makes me nervous but I know Richard wants to be out of pain. Let’s see what is going on with the pump and then discuss other pain control options with this doctor. If Richard can get some sort of pain control then we can continue our search for another pain management doctor.

This is a risk and anyone who knows me, knows I am very risk-adverse. However, I know Richard would not make this choice if he was able to find some other way to get out of pain. The dye study itself won’t get him out of pain but it is the first step in that direction.

I’m sure everyone is shaking their heads and thinking we are crazy but this pain has to stop.

The quiet is starting to freak me out.