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NEUROPACE

Hello...I'm fairly new to this site since yesterday..I got diagnosed in my 20's. I'm 41 now and life has been very hard as I'm sure many of you know. I haven't driven since I got diagnosed with mild epileptic seizures. Everything I was hoping to do professionally since high school has been stopped because I lost my independence. I had to work in a job I hated and had seizures at. My memory is so awful I stopped college because of the anger and frustration. I am dependent on my family which I never wanted to do. My family has been very supportive and I found a husband whose been more supportive but its still really frustrating and I've taken all the meds and nothing helped control the seizures. I'm on lamictal and recently aptiom.
Talking to my neurologist all these years he wanted me to keep trying different meds. He didn't want me to have the VNS because he knew Neuropace was going to be the best option for me due to the type of seizures I have. There is a surgical cure but he refused it because the seizures are on the left side of my skull which is where my memory comes from and he didn't want to jeopardize memory anymore that it already is. He increased and changed prescriptions so much but he wanted me to wait about the Neuropace. I was really excited about it. Finally in 2015 Neuropace was approved by the FDA and and I got it implanted in the left side of my skull in August 2015. It's not what I was hoping for. I've met with doctors from the Neuropace office and talked to them about it before and after the procedure. After the procedure I went for over year with extremely awful anxiety attacks to where I would fall and bite my tongue and have awful headaches, shaking lips, not able to speak clearly, pressure on my left eye. And all this only on the left side of my body. In October 2015 I fell off my bed. My husband later found me on the floor. The left side of my face was swollen and there was bruises and it was completely red. It looked like rug burns so I assumed I was twitching really hard on the carpet. All these things on the left side of my head. My right side is completely normal. My neurologist said these things are only coincidental because they aren't side effects of neuropace. but it seems weird to me that it only started happening after the implant and only on the left side of my brain and with the seizures I had before didn't make me fall and I never had anxiety attacks. The anxiety stopped and I haven't fallen or bitten my tongue. But the seizures I have now has its ups and downs but And about 6 months ago I stopped having that really heavy left eye. They don't drain me out anymore. Before the seizures would require me to rest all day. Now I just have to close my eyes for a few minutes, sometimes half hour, and then afterwards I will be fine and normal. I don't have to sleep. Just rest my eyes because my left eye would feel that pressure still. I think it just took sometime for my skull to realize there's something new there. But the Neuropace has different levels and my dr is increasing the level slowly.
Please understand I'm not putting down the neuropace. It is a brilliant object and I think it will just more time for me. If you read other reviews it will show people are excited that it's lowered the amount of seizures they have but not stopped them all. Neuropace isn't a cure that's why I still have to take the medications for the rest of my life. Its just detects when seizures are coming and sends the responsive neurostimulation to it. Its different from VNS mostly because VNS sends the electrical impulses to the vagnus nerve system every 2 minutes and Neuropace (aka RNS) only sends the stimulation when it detects abnormal electric activity in your skull.

I apologize for my blabbering. Sometimes when I start typing or talking I don't stop. Does anyone else have the Neuropace?

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