We are in the last week of the Lyrica wean and Mira was doing great, up until yesterday. She has been very, very irritable and nothing is keeping her happy for more than 5 minutes at a time. We haven't seen an increase in seizures, just a huge spike in her demeanor. She is just unhappy and crying all the time. When she isn't crying, she is sleeping.
We have been on this medication roller coaster so many times and for so long, that we are just chalking this up as part of the ride. It's one of the big reservations we have always had about changing her medications. Everyone has to roll with it and the hope is that things will get better for her.
Right now, Mira is on a small dosage of Vimpat (lacosamide), which she started a few weeks ago, soon after we started weaning the Lyrica. Vimpat is one of the few medications she hasn't tried. The likelihood that it will help is minimal, but it's worth a shot. Her myoclonic and tonic-clonic seizures had been steadily increasing over the past 18 months, eluding to the loss of efficacy of the medication she has been on for so long. We tried increasing the Lyrica and the irritability increased too.
Some days (and years), you just can't win. The roller coaster and the year of the seizure continue on..........