Responsive neurostimulation (RNS) as an epilepsy treatment?

@absentsenior - just to let you know that for your own privacy and security, I've removed your personal phone number and exchanged it for private messaging you on Connect. If you've not yet used it, you can find the little envelope between your profile and your notifications in the top right of any Connect page.

@santosha
It seems odd to have someone I don't "know" to be concerned about me, and is more than appreciated. I've been going through a rough patch. It's still very early in the process.
As my surgery, was only 6 months ago. I tend to be rather drug resistant and have been most of my life. My doctor put me on a drug called oxcarbazepine. I didn't do well on it. And it tended to magnify instead of reduce.
So I am in the process of titrating off of it. When I start at the first step down, I woke up one morning to a feeling of being completely lost to the point of not knowing my way around or through my home of 15 years. I haven't been able to find my daily journal and that is driving me nuts, and I've found so many things misplaced in the house to illogical places. An example would be finding ice cream in my dish cabinet, not a little on a plate but the entire carton. I experienced a gut level sense of fear that almost drove me to a corner to just sit and try to hide.
It wasn't logical or sensible and was completely without reason. But it happened. On top of that, I retired two weeks ago because I didn't feel I could service my clients as well as I prided myself in. Many have become good friends over the 2 decades I've known and helped them, and they are worried about me, as the retirement was unexpected. It's difficult to leave those you've known for so long behind and have to trust that someone else will take care of their travels and do it well. I should be hearing from my doctor today and suspect it will be a phone call as he tends to do that if he's concerned which i'm thankful for because it'll be much easier to explain the issue. I have a sister that I am very close to. That to some degree is my flotation device (LOL). We've been very close throughout our lives. It's one of those relationships where she knows more about me and I about her than we know about ourselves. I will be part of tomorrow's session. Although without a computer and must go through my phone and I have yet to have luck to be able to make it work as a 2 way communication during those sessions. It's an Android. I'm not sure if that's the reason or what? But it is what it is. I truly appreciate your concern and have been very fortunate to have a sister I am very close to and a doctor I adore. If you feel any reason or a need to reach out outside of this group, feel free to private message me on Connect. I am in AZ. Thank you very much for your query.

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

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

@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.

Hi @absentsenior
Thank you for sharing all of this!
I'm relieved your sodium was checked and caught, even though the result was so low. And I'm glad you and your neurologist have such a close, open relationship — that really does make a great difference!
Trileptal (oxcarbazepine) works as a sodium channel blocker, and I already tend to run on the lower side with blood pressure — so it lowered it further. It was actually through that experience that I learned low sodium is one of my own seizure triggers, which was an important thing for me to understand about my own condition. My medication was eventually changed to one that doesn't work that way.
It sounds like you and your doctor are already actively working on the sodium and Trileptal connection, which is reassuring. Out of curiosity, how has your blood pressure been through all this?
I see you're already titrating down the dose. Out of curiosity, has your doctor mentioned trying an anti-seizure medication from a different therapeutic class, one that doesn't work as a sodium channel blocker?
I hope all the changes help support you as you recover. Sending you much strength while you wait for your memory to return.🙌
Chris