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Responsive neurostimulation (RNS) as an epilepsy treatment?
Epilepsy & Seizures | Last Active: 18 hours ago | Replies (47)Comment receiving replies
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
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@santosha i'm sorry it's taken me so long to respond to this. My reaction to titrating down on the oxcarbazepine was not a good one. It came very close to putting me in the hospital. But instead, I want to stay with my sister for a couple of weeks, which for me, was a better environment. I worked to increase my sodium level, but nothing worked. So at the moment today, I have chosen to go back on Keppra. Not something I'm looking forward to. As it tends to make me and not very nice person. But my neurologist suggested I take vitamin B-6 with it to see if that has an impact, I am somewhat frightened to be titrating up to a full dose of the keppra, while I am still add a full dose of the oxycarbazopine. In truth, I'm somewhat terrified of the combination, but I am more afraid of titrating off of the oxycarbasophine. Like so many of us I'm stuck in the position of having gone through most of the pharmaceuticals to treat my epilepsy
But I have to have faith in the team that's caring for me, and be very grateful for a neurologist who truly listens to me and trust in his experience and judgment. And I need to give the RNS it's chance to learn and handle more. I'm grateful for it because at the worst of this that device told me I was having a great many more seizures but a large number of them were not breaking through, because that device is learning and starting to do its job.