Bob is doing very much better this weekend after making some adjustments
to his medications. On Friday evening Bob had one of his "episodes"
with the alarming new element that he was experiencing double vision. We
called Bryn and left her a message about this new development. She flew
into action to learn more about the three anti-seizure medications that
Bob is taking. She also was able to reach Dr.Kass at Baylor who has
generously been consulting on Bob's case.
What we learned is that two of the three medications are supposed to be given three times a day eight hours apart, not twice a day twelve hours apart as Bob has been given. The phenobarbital, in particular, can have dangerous withdrawal symptoms, including seizures, and Bob has been experiencing several hours of withdrawal twice a day! This helps explain the early morning confusion and anxiety while he was experiencing at the rehab hospital as well as the anxiety he has been feeling in the evenings, impatiently waiting for it to be time to take his meds.
Bryn had us adjust his medication schedule to three times a day, and what a positive difference that has made! Bob has not had any more of his episodes of feeling jittery and like he was having to struggle to "keep it together." Spacing out the Keppra has also seemed to eliminate the bouts of hypomania, of over-the-top exuberance and grandiosity that he has sometimes been having.
The third medication, Vimpat, seems to be the likely culprit for the double vision, so we have begun weaning him off of that med.
I am once again so, so grateful for Bryn's smarts, persistence, and love. How could we have negotiated this treacherous journey without her? I am upset that Bob's doctor who prescribed all of these medications has not been more attuned to these issues, and just so glad we've had someone on our team to help sort this all out.
Bob is also making really outstanding progress in recovering his physical strength and balance. He is now able to move about the condo without a walker or having someone at his hip, which he is very happy about. When we go out, he uses Exerstride walking sticks that were a gift of a group of Wellcoaches students and faculty, which is very much cooler than a walker! They even got me a set as well, so we are looking forward to making these a regular part of our exercise routine.
Thank you to everyone who has been keeping Bob in your prayers. It feels like we have taken another important step forward in his healing journey.
Megan
What we learned is that two of the three medications are supposed to be given three times a day eight hours apart, not twice a day twelve hours apart as Bob has been given. The phenobarbital, in particular, can have dangerous withdrawal symptoms, including seizures, and Bob has been experiencing several hours of withdrawal twice a day! This helps explain the early morning confusion and anxiety while he was experiencing at the rehab hospital as well as the anxiety he has been feeling in the evenings, impatiently waiting for it to be time to take his meds.
Bryn had us adjust his medication schedule to three times a day, and what a positive difference that has made! Bob has not had any more of his episodes of feeling jittery and like he was having to struggle to "keep it together." Spacing out the Keppra has also seemed to eliminate the bouts of hypomania, of over-the-top exuberance and grandiosity that he has sometimes been having.
The third medication, Vimpat, seems to be the likely culprit for the double vision, so we have begun weaning him off of that med.
I am once again so, so grateful for Bryn's smarts, persistence, and love. How could we have negotiated this treacherous journey without her? I am upset that Bob's doctor who prescribed all of these medications has not been more attuned to these issues, and just so glad we've had someone on our team to help sort this all out.
Bob is also making really outstanding progress in recovering his physical strength and balance. He is now able to move about the condo without a walker or having someone at his hip, which he is very happy about. When we go out, he uses Exerstride walking sticks that were a gift of a group of Wellcoaches students and faculty, which is very much cooler than a walker! They even got me a set as well, so we are looking forward to making these a regular part of our exercise routine.
Thank you to everyone who has been keeping Bob in your prayers. It feels like we have taken another important step forward in his healing journey.
Megan
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