Limbo Day 2 – Withdrawals

Two days out of surgery brought withdrawals for both Ryan and me. My withdrawals involved a very restless night’s sleep without Ryan at home with me. For Ryan the withdrawals were from the stopping of his epilepsy medications.

Ryan has stopped taking all of his supplements the night he got the call that the surgery was moved from February 2021 to June 15, 2020, only a week away. The doctors told him to take his last dose of Epidiolex the night before the surgery so he went into the surgery this past Monday having taken only two of his three medications. Monday night he had the two medications again. Tuesday morning the doctors reduced his dosages on the two medications. Tuesday morning was the last time he took any seizure medications.

So it should have been no surprise when I visited Ryan today. I could tell immediately that something was off but I couldn’t tell what. He even complained of feeling horrible but he couldn’t pinpoint where or why.

I thought at first that maybe he was having a tonic clinic seizure on its way. He had woken up in the middle of the night with a myoclonic jerk. He also had a myoclonic jerk when physical therapy came to get him out of bed. However, two jerks were not enough to give the doctors the information they need. Nor are they enough to be a sign of a seizure coming.

Later in the morning Ryan started saying he was cold. At first I agreed because the room was quite chilly but then Ryan got to the point where he was shivering like crazy. His temperature was normal. The room thermostat was moved to a warmer temperature. The nurse brought Ryan warm blankets.

No sooner did Ryan get warmed up when his body went the opposite direction. He was hot. He was shedding his blankets. I turned the thermostat back down.

It occurred to us that he was going through withdrawals. The medications he had been taking for so long that were suddenly cut off were finally leaving Ryan’s body. There’s no telling how long this withdrawal process will be but Ryan indicated in his good night call that this cycle continued after I left.

As with some withdrawals and detoxes, this too might cause Ryan to have a seizure. The nurses are concerned enough that they have asked him not to get out of bed any more tonight.

So maybe tonight he will get the seizure he needs to move on with the next phase of this process. I know he will be safe whenever it is because someone is always watching his EEG readings and watching him through the camera that follows his every move in the room.

In the meantime, I will try to get some rest despite my Ryan withdrawals. Hopefully Ryan is almost to the end of his medication withdrawals. Day two of Limbo equals withdrawals.