When Seizures Come by the Dozens

The unexpected nature of seizures is scary enough.  Will one strike while Robert is eating? When he is standing? When he is transferring from his walker to the wheelchair?

Robert’s seizures are the Complex Partial type.  He loses awareness, his head turns to the right and generally, there is labored breathing. 

They last from 2 seconds to 5 minutes.  We can usually tell when he is going to have a longer one because his head turns more to the right than with the shorter ones.  It’s as if his head is turned as far to the right as possible – sometimes the seizure starts with his head sort of to the right and then after a few seconds, his head turns all the way right. 

When that happens, I know we’re in for a few minutes of labored breathing, lips pursed together and, sometimes, a fall (unless we prevent it).  His whole body tries to turn right causing him to move out of his chair.  Richard or I gently hold onto him or block him so he won’t fall off the toilet or chair or wherever he may be. 

Those are awful.  Robert is confused afterwards although it is interesting to hear him answer the questions we ask him.  He has insisted I am not his sister, has thought Richard was his step-dad or brother and many times cannot tell us where he is living.

It must be very scary for Robert to be so confused. Richard and I gently remind him where he is and who we are and eventually the confusion subsides.

For months now, Robert has been having clusters of seizures within a short period of time.  These usually come by the dozens and have proven to be quite challenging to stop.

The first cluster of dozens was in November just a few days before we left for Disneyland.  The Nurse Practitioner (who I LOVE) thought the cluster was caused by all the excitement of the upcoming trip.  That made sense.

Until two weeks later when another cluster struck.

Then one in December. One in February and two in March (so far).   

The NP increased the dose of the emergency med when the clusters first started as another theory was Robert was getting used to the drug (Ativan) and it was losing its effectiveness. She told me the max amount to give him per day was 4 mg.

Twice I have had to give him more than the max.

Twice I worried that I was going to do more harm than good. 

Yes, twice I have worried that I was going to kill him by giving him too much of the medication.

If I don’t give him the emergency med the seizures keep coming and I am afraid he will end up in Status Epilepticus. 

I have taken him to the hospital during a cluster – the first time it happened.  Going to the ER is always a risk, however, because declines happen at hospitals.  It is best if I can manage the seizures at home. 

So Richard and I do our best.  We keep a log, time the seizures, give him the Ativan and keep the activity and noise to a minimum and let him rest.

(We also take him to the restroom a lot because the Ativan seems to activate his bladder like you wouldn’t believe!)

The logs have helped.  I keep a seizure log, a behavior log and a vitals log. They help me try to find the seizure triggers and they help give me a sense of control over something I absolutely have none. 

I realize the logs are an illusion of control but I use them and they are comforting.

They are actually very helpful, even if they don’t really give me the control I think they do.  However, I have reviewed all the logs and have a theory: I think the trigger has to do with him being overly-tired.  The clusters occur on the weekends (except one which happened on a Thursday).  I think he is exhausted from waking up early through the week and going to Day Program.

The other correlation is they tend to occur when he is congested.  He has had a really bad cough lately but his vitals are fine (no temp, pulse rate is normal and the oxygen level is normal as well). Maybe it’s a combination of the congestion and being overly tired. 

In order to make sure he is well-rested, we let Robert sleep in on the weekends, we have changed his bedtime to an hour earlier and the weekday morning wake-up to an hour later. We have declined morning transportation to Day Program just so Robert isn’t rushed in the morning and we can let him sleep in later than we would be able to if he was supposed to catch the van to Program.  

It still may not be enough rest for him.

Robert’s seizures are changing and getting scarier than they used to be but they will not deter me.  We will continue to look for the right medication, the right amount of sleep, the right triggers so we can more effectively manage the seizures. 

We have to – there is no other option.