Saturday, December 27, 2014

Withdrawal is Ugly

Yesterday was Mira's last day on Lyrica. We have been on a roller coaster with this medication for a little over 7 years. It's hard to believe it has been that long and Lyrica has been her longest running medication she has been on by far. She first started it in October of 2007 and when she did, we thought it was our miracle medication. While she was completely seizure free for nearly 6 months, her EEG remained unchanged. Her development didn't move forward like we anticipated either. Lyrica seemed to just visibly mask her seizure activity on the surface. Nonetheless, it seemed to help some with her irritability and at the time, we thought it was stopping her seizures.

Soon after it lost its apparent efficacy, we have tried increases (as well as decreases) with Lyrica, with negative results in either direction, so we have always been afraid of getting rid of it completely, continually repeating the mantra 'it is doing something'. Perhaps it is doing something, but what it is doing is merely masking symptoms, not treating them. Her myoclonic seizures have been steadily increasing over the past year, despite increases with Lyrica. After our last neurology visit, we collectively agreed with our neurologist that Mira needed to be taken off of it completely.

Mira has been tapering off it for 4 weeks now, with yesterday being a small 50mg dosage. Early last week, when we dropped from 100mg to 50mg, she had a miserable few days and then seemed to gradually improve by the end of the week. This past week was pretty much a repeat of the week before, so it makes sense that she would be feeling miserable with each decrease. Hopefully, it is all over soon for good.

That brings us to the withdrawal. I have come to the conclusion that almost all of these AEDs are horrible to come off of in some capacity and Lyrica is no exception. There is a host of potential withdrawal symptoms here. After reading through various message boards from people who can articulate the symptoms they experienced during their withdrawal period, I can sympathize with the pain and understand a little what Mira is potentially feeling.

She has been inconsolable today and cries constantly. Nothing keeps her happy for more than 2-3 minutes. She gets frustrated with her toy, then cries and wails until she is exhausted. She was able to take an hour nap this afternoon, but then proceeded to cry for the next 2 hours. Her appetite is still intact, so there isn't a concern that she is too distraught to eat. We have been giving her Advil periodically, which seems to help some, but there is not much else to do for her but wait it out.

Withdrawal sucks.

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