Join the Conversation on
89.8K people
0 stories
2.3K posts
About Epilepsy
Explore Our Newsletters
What's New in Epilepsy


That’s that. I’m having to write all over again. I got a SCS ( spinal cord stimulator) which is a device with a rod in your spine and a generator in the back hip and it’s supposed to make the pain not go haywire. CRPS (complex regional pain syndrome) is the worst incurable pain (nerve) known to man and it’s called Suicide Disease. It’s incredibly painful. There’s no cure, research or treatment for CRPS. It’s definitely coming out.

it was great in the beginning! But all things must come to an end. The rep asked me if I believed that there was damage to the SCS. We were talking about that. He called the neurosurgeon because we couldn’t get an appointment and TA-DA, he got us in. After my parents bombarded the neurosurgeon with questions. I immediately started shutting down. I didn’t feel like it was my appointment anymore or if I was going to have any time to say something. Well, I wasn’t paying much attention but it seemed like my parents were done. I told him that I was feeling like the SCS was causing me more pain than usual with the rep standing off to the side nodding with support, Neurosurgeon said that doesn’t happen.Then that’s it. I don’t remember anything else. It’s possible I had an absence seizure since I do have epilepsy. I don’t remember leaving the room.

The thing that is bumming me the most is that Rep used to answer me right away.Lately, after that appointment, I hardly hear from him. He’s seen a little bit snappy in one of the messages. Maybe he’s just really swapped and kinda took it out on me for a minute. I’ll just not say anything and leave it in his hands.

Besides that, I have a caregiver who’s been nothing but of major help, my mother. Yes, I have felt like a burden but she says how can you be a burden when it’s not your fault. I try to remember that. She has her days where she’s exhausted from being a caregiver but she always gets back up and do the best damn job she can do. I love her and I don’t know what to do without her.

just A Thought,


#CRPS #RSD #Sci #SpinalCordInjury #ComplexRegionalPainSyndrome

3 reactions 5 comments
See full photo

A Letter To The Kids Fighting Epilepsy

I know that your situation is unfair and you might justify by asking “why me?” You were selected for this battle because you are one of the unique individuals who is strong enough to fight it. It is time for you to accept your diagnosis, own it, and advocate for your community. You are more than the shame and embarrassment that you might be feeling. Oh and…Take your medicine, drink lots of water, and get good sleep! Take care of yourself kiddo because you are my hero! 💜


I'm new here!

Hi, my name is LillianH33. I'm here because my son has a rare form of Epilepsy called Dravet Syndrome. And I want to share our journey


1 reaction 1 comment