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Anesthesia, Behavioral Issues, and Epidiolex?!

Sat, 05/18/2019 - 07:54
Hello all, This is my first time posting as I'm in dire need of anyone's experience/advice. This is in regards to my sister who suffers from lennox gastaut syndrome. From 2016 until 2019 she was on Keppra and Topomax and was doing ok, not seizure free, but occurring less than before. Her seizures then started coming back to which her neurologist added zonegram. Around the same time of the neurologist prescribing Zonegram, my sister became more aggressive and irritable, but still manageable. Everything blew out of proportion when she went in for a minor medical procedure last week and had to be sedated completely; it's like a switch went off in her. Her sleeping has gotten worse, she's very confused, always crying and screaming. She's cognitively impaired so it's hard for her to express what's going on. All we see is a very erratic her and seldom anything to calm her down--she has lost total interest in all the things she used to like before. She's also gone on a food strike and has barely eaten anything in the past week, and whenever she does eat, she starts gagging. Her neurologist advised us to stop the zonegram, and prescribed her epidiolex. I'm sorry for the long rant but I'm at my wit's end. My following questions are: 1. Has anyone experienced a sudden shift in mood after being administered complete anesthesia? 2. Have you ever stopped a medicine-that was causing severe mood changes- cold turkey and what were the results? 3. Any one have experience with epidiolex and lennox-gastaut syndrome? I would appreciate anyone's feedback/reply!

Comments

I was put on Zonegran on

Submitted by birdman on Sat, 2019-05-18 - 08:54
I was put on Zonegran on March 2 of this year.  First I had some blisters but they went away.  It took many weeks before I noticed some mild depression and along with increased irritability.  It is not just anger but rage to the point of violence that I break things and feel I could hurt mother or other people.  I have had this from other anti seizure medications but I've read about many other people having aggression with Zonegran.  I doubt the shift in mood was cause by anesthesia although it could have added to it.  Maybe it had some increased effect upon the Zonegran.I am only tapering off the Zonegran from 200 mg to 100 mg.  The doctor also encouraged me to take an extra half tablet of Klonopin for the anxiety and for increased seizure risk.  I'll be on this increase until shortly after my surgical implant of the Responsive Nerve Stimulator.  The same occurred with other meds that caused increased rage; the doctor tapered me off the pills.  The only time I was given instructions to stop my anti seizure med cold turkey was when the extra pill I was trying (Tegretal) left me with elevated enzymes showing an allergic reaction to the drug.  I didn't experience any increase in seizures after that sudden stop.I hope your sister will feel better after getting off the Zonegran.Mike

Thanks Mike for the reply!

Submitted by healthy_living on Sun, 2019-05-19 - 15:27
Thanks Mike for the reply! Since lowering you Zonegram from 200mg to 100mg, have you noticed a decrease in the aggression/rage you feel? And how long did it take for you to feel better after stopping other medications that caused adverse emotional effects? Thanks and all the best on your upcoming procedure! 

Alaa,Yes I have been feeling

Submitted by birdman on Sun, 2019-05-19 - 21:29
Alaa,Yes I have been feeling better since the decrease which I did on May 10.  I noticed a difference in less than a week.  But I can't contribute it all to the Zonegran decrease.  The doctor's interest and priority is in keeping the seizures under control and since I just came out of some rough seizures during an EEG monitoring it made sense to be more careful and take the extra precaution by trying one more new pill.  But it didn't work and the rage and aggressive behavior was not worth it.  With that in mind I sent email to doctor that I was sure I wanted to decrease the Zonegran.  I know he wanted to maintain seizure control until after the RNS implant so I also suggested that it would make sense to increase the Klonopin I take for anxiety just a little (from 0.5 mg to 0.75 mg or one half a tablet more).  Klonopin has anti seizure effects but is not useful for long term because of "drug tolerance" or a person gets used to it and will always need more to maintain the same effect. I normally would not want to take more of this medication as it has been leaving me more tired, but it is just for the short term until we get the RNS treatment going.  So with the decrease in Zonegran I've been taking a little more of the anti anxiety medication, Klonopin.  Also a couple weeks ago I received a notice from my insurance that they were denying the surgical implant unless it could be proven I had more than six seizures per month....  That I'm sure added to the depression, anxiety, and aggression I was feeling.  This last week I got a call that surgery is approved so I can relax much more now.  But still I do feel that the Zonegran was a major contributor to my anger / aggression / depression.  I've had this effect from several anti seizure medications I've tried.

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