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@@SadieSlays00 yeah, there are times I talk random things before. I always ask what I did and said cause boy is it entertaining sometimes. Throughout my life, I’ve had all kinds of seizures, but I think it’s due to being put on different kinds of meds and having the implants.

This was extremely kind. Thank you so much. I really appreciate it. I haven’t made a video in quite a while. Congratulations on finding a great neurologist. Which implant do you like better? I like both. I like that others could help with the VNS, but the RNS has gotten me further (less seizures). I’m happy my videos were easy to understand. I definitely need to make an update video. Divorced now, so no person that helps me take care of everything like you said lol Still friends though. I hope you’re doing great with your seizures. Thank you for taking the time to comment. Take care! ☺️

@secretagentmandy I feel like I have made more progress with the RNS implant and all of the data it provides. Its nice that I can timestamp the data with my magnet when things are starting to feel bad and my doctors will be able to see that. However, I do like the extra feeling of control that the VNS implant gives me. It doesn’t always stop/interrupt a seizure, but it definitely slows them down! I'm still watching my way through your channel, so I wasn't aware of your divorce. I'm sorry for that. But after watching the videos I had seen, I felt I should let you know what they meant!

Thank you so much ❤

You’re welcome ☺️

I’m just now seeing this. My apologies. Yes, you’re so right. Unfortunately, for now we have to continue the rocky journey we’re on

Thank you 😻

My cat he died😿

@@paolacolon2679 I’m so so sorry for your loss. That’s very hard 💕

Absolutely 👏👍☺️

I do too. It’s tough sometimes

That’s right! Chowing down 😻

Also watch the movie (first do no harm) actor Meryl Streep !!!!!

Don’t expect immediate results. It takes times on the adjustments and to start seeing results. So great when you do though 🙌🏻

It’s definitely difficult. Here if you need to talk. We discuss these things on Instagram sometimes.

@@secretagentmandy thanks..... I always have my seizures in my sleep and I always go status epilepticus. Ive been taken to the hospital by ambulance 20+ times in the last 3 years.... I go to sleep most nights wondering if ill wake up the next day. I've convulsed so hard a few times that it tore ligaments in my back and shoulders and I wasn't even able to stand afterwards from the pain. Epilepsy fuckin blows 😢😢😢

Hi! Yes. I’ve seen progress with it. I feel like my brain can actually take little breaks. Are you not seeing progress?

You’re welcome! Happy it helped. The Neuropace has definitely brought me progress ☺️

Happy that you also understand ☺️ thank you! I sure am. Happy New Year to you as well! I made an epilepsy Instagram if you get bored..dedicated to my journey. My name is epilepsystrength on there if you have Instagram. Hoping everyone speaks about epilepsy and makes it well known ☺️🙌🏻

J. Aaron Dowell thank you! hoping to get better with the videos (quality) in the future. 😉 mine still would still hurt every now and then as well. It’s actually been over 3 years for me and I get headaches. I never used to get them, but now I do. If that’s something that goes along with it, then I guess I’ll adjust obviously. Seizure wise? Awesome! 😎 still having them, but able to go much longer without now. So, are you guys like me? Asking family and friends for rides or do you use like ubers and taxis? I hate that you’re in my spot, but I completely understand. I really wish more companies were made to help people in situations. When you live in small towns too...they don’t have squat. I hope overall you and your wife are doing well!

secretagentmandy Yeah. I have to rely on everyone to go anywhere. I use Uber sometimes. But lately I just stay home. Wife lost her license 3 years ago from poor vision. And so my dad moved in with us to help but it’s feeling less helpful lately. I don’t know what to do. I’m stuck Just really frustrating not having the ability to hop in my car and do things on my own. I friggin bought a super nice car a year before I lost my license. 😑

Karen Llewellyn I’m more of a hermit now, but I think it’s because I’ve adjusted to being at home all the time. Years ago, I used to go out all the time to visit friends, shop, do activities, etc. Now? Nope

Thank you!

Patrick Degenaar oh wow! Why thank you. That’s very cool. I’ve had it for almost 3 years now and it’s helped out SO much. I unfortunately still can’t drive. In the state of KY, you have to be seizure free for 3 months, but I’ve come a long way. Such a great decision with each adjustment they’ve made with it. More and more progress 👍

Stephen Dunne I’m still taking Lexapro. I have been for years. My mood goes back and forth, but I’ve struggles with depression for years. I believe I just need a new med. Just haven’t done it yet. I need to get my tushy in gear.

@@secretagentmandy well I actually got offered to take them for my epilepsy because my epilepsy is so hard to live with my mood is gone down so much, I'm actually only out of hospital today been in there for 3 days in tallaght hospital Ireland, my nurse had a talk with me about surgery and I mentioned the surgery you went through and she told me that the surgery's were completely different

Stephen Dunne you’re right. Epilepsy and depression can go hand in hand. It’s tough. When you say the surgery is different..what do you mean? What did they say?

@@secretagentmandy you can say that again terrible thing to live with, they said that RNS and the surgery they want me to go through is completely different what ever that means

Stephen Dunne it must be a different kind. I’ve had 2 different surgeries so far. Years ago, I got the VNS implant. That was my first. A few years later, I got the RNS implant. There are many different surgeries though to help with epilepsy. I know there is one where they take a piece of the brain out. I guess you’d have to get the name of the surgery they are recommending for you.

Karen Llewellyn - My Mum Has Epilepsy I have more updated videos. I’ve gotten 2 surgeries for my epilepsy. I have a VNS and I also have an RNS (Neuropace).

odalys cardona no! Not bothering at all! Oh wow. I can see why you’re scared then. I have issues with my memory and it’s really embarrassing 🙄 sometimes I fake it and say, oh yeah, I remember that..when nope..I don’t remember. I don’t want to explain why I don’t. I also don’t want to hear, “but Amanda, we JUST talked about it!” or “ That wasn’t that long ago!” Been there too many times with people. I don’t regret getting a second opinion, but I think if I were in your shoes, I’d get one, just to be on the safe side, with everything that happened in the past, to make sure it’s the right thing for your body to handle. Like I said, try the epilepsy groups on Facebook to talk to others that have gotten the RNS to see their thoughts as well. I also met people through Instagram with the RNS. always willing to help! You’re welcome ☺️💕

odalys cardona it’s implanted within the skull

@@secretagentmandybut didn't they have to do a craniotomy in order to insert the RNS?

odalys cardona yes

I had a craniotomy to have brain surgery and was seriously bad i lost a lot of blood after the brain surgery. I am afraid. But i do not know if they have to drill holes in my brain. I will be meeting with my doctor on the 26th of this month. Did u get a second opinion?

odalys cardona I’m so sorry! I didn’t get a second opinion, but I did join fb seizure and epilepsy groups and asked questions to others that had the RNS. I actually wound up making quite a few friends on there. I also looked up reviews on my surgeon before getting it done.

odalys cardona yes..they had to it to put electrodes onto the brain. When I get stressed, I also have seizures. I haven’t had a grand mal in years. I’m on loads of meds and they helped big time. They’re still trying to get rid of my complex partial ones I have.

odalys cardona there were days I’d have up to 16 in one day.

odalys cardona no, it was implanted on the life side of my head...about an inch above my ear.

Karen Llewellyn - My Mum Has Epilepsy yes..it’s embarrassing sometimes when talking to family or friends. I’m very forgetful. I definitely understand.