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Responsive neurostimulation (RNS) as an epilepsy treatment?
Epilepsy & Seizures | Last Active: 1 day ago | Replies (45)Comment receiving replies
Hi @absentsenior,
That morning you described — feeling completely lost in your own home — sounds truly frightening. I'm very sorry you went through that.
I also didn't do well on Trileptal. It caused low blood sodium and very low blood pressure for me, which brought on dizziness, fatigue, and confusion. Like you, I tend to be very drug-resistant to traditional AEDs. I hope the titration process brings you some relief soon.
I'm also glad to hear you have a sister who's such a steady source of support through all of this.
I also want to acknowledge your retirement. Twenty years of relationships with people who became friends isn't something you walk away from lightly, even when it's the right call for your health. I understand those feelings well — I went through something similar in 2019, when I felt I could no longer provide quality service in career management and outplacement, and chose early retirement myself. What helped me was staying active and putting time into things I'd never had space for while working. My door as a career consultant closed, but others opened later.
How did the call with your doctor go — did he or she say your confusion might be a side-effect of oxcarbazepine? Have your blood sodium and pressure levels been checked? I'm also very curious to know if the RNS has altered your seizure patterns and how you have been adapting to it.
Sending you lots of strength,
Chris
Replies to "Hi @absentsenior, That morning you described — feeling completely lost in your own home — sounds..."
@santosha
I went into mayo today to the have blood drawn, and a walking e e g attached for twenty four hours. I made it a point of having my neurologist check my sodium levels at the same time and the results came back dangerously low. I called him to find out what to do and he advised electrolyte water, high in sodium, and to drink less plain water. We live in the desert and we are accustomed to drinking a great deal of water. Before the appointment, I had looked into the drugs, and he also put me on clonazepam in conjunction with the trilipdal for ten days to try to even me out. I did tell him that any drug that was capable of doing that to me. I didn't think was good for me to take. I saw him for a moment today when he came in to check on me during the EEG attachment. His nurse had not been clear to him about the severity of the situation. He and I have a very close and open relationship. I am hoping my memory comes back and that it's not gone for good. But only time will tell. I went to my naturalist this evening to get supplements. That would better support my sodium and that just needs a few days to correct itself. I appreciate your concern and would definitely tell anyone else thanking about trilipol or oxcarbazepane to think twice and to always research a drug, and it's possible side effects before ever putting it in their mouth, they also need to check it's interaction with their existing drugs. I will cover we always do. Thank you.
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@absentsenior
Just a quick comment. Trileptal is the reference brand of oxcarbazepine.
Chris
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