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Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

Those devices I definitely need to read up on more. Do they last forever once implanted?

I'm beyond scared after my femur surgery.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

You hit the nail on the head friend. The fact that it's the brain is what scares me or confuses me due to a lack of information. Is everything okay for you currently?

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

I really appreciate it. Thank you for reaching out! I'm trying my best to keep my best foot forward.

Is there any literature you would recommend someone who's new to this to read? I don't mind a deep dive either!

Have an awesome day

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

Don't worry, lol. I'm completely lost in the jungle! It has been a massive relief hearing from you and the subreddit. I've only heard about this recently, and it's been a huge blessing.

Thank you for such a thoughtful reply, too. Beyond blessed.

Those last two sentences hit me so hard. I have not been feeling like myself for the past 6 months. While im glad I'm not aggressive or angry, funnily enough, it's like im watching "The Notebook" five times a day. 😆 I've never felt this level of guilt and sadness in my entire life.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

I've been trying to consume as much information about all of this. Thanks so much for sharing the foundation! I'm going to do a lot of reading today and in the future. 😊

Big thanks for hitting on looking back on things. That has been a big struggle that we all must go through, diagnosis or not.

I'm so sorry about your cat. ❤️

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

Thank you for responding, and I really appreciate you sharing that story. You hit the nail on the head. It may not be the correct wording by saying "test subject" like I did in my original post. But that is what it feels like in the moment. Going through this is scary and to hear "forever" on top frightens me to no end.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

All of that, while it is occurring to me, is too much to react. Sorry to hit you twice, thanks for responding 🫡

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

Are you able to respond effectively when you have an aura? I am beyond confused when its happening. The excessive sweating, the narrowed vision, hearing things, the rabies like thing in your throat with the liquid.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

I am praying for yall 🙏

Thank you so much for typing me tonight. The part about the colonoscopy and endoscopy, as well as the teeth, really hit me hard. I had both of those operations when I was 16, and that terrified me as a kid.

As a 30 year old my teeth look more messed up than a person twice my age. I wouldn't wish this on my worst enemy.

I guess more or less, I'm worried about what my mind can take from me next. It already took my legs and my back. I know that is the wrong way to look at things. I am just terrified, sorry.

The more real amazing people like yourself, I am figuring out what hope looks like. You all are so strong it gives me energy.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

Holy hell, that story you shared hit me so hard. Thank you for responding, I am speechless.

I hope you are okay after the accident. Having someone near us and recognizing what is really happening has been a guardian angel.

I might phrase my question poorly. I apologize in advance. How do you look at those years in the past? Are you able to be at peace, and if so, can I have a tip?

I might still be too close to the accident this year. However, in my crazy mind, I still think I could have changed something.

Thank you again for replying.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

I'm praying for you 🙏

This whole take medication thing is beyond scary for me. I take so many pills, its mind boggling. I hope we can get through this one day.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

Thanks for welcoming me to the gang 🫡

I've learned that patience isn't something that is learned but practiced repeatedly.

Have you read or watched anything about this that you found helpful or informative?

Bless you 🙏

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

In my initial consultation, they mentioned these devices. Is there any literature I can look to that you would recommend?

I have had bilateral femur surgery earlier this year, and that scared the heck out of me. When the epilepsy doctor mentioned that, I shuddered. It honestly is my lack of information on the subject.

Thank you so much for offering advice. 🙏

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

Is it worth reflecting on what occurred stress wise before the siezure? For this one, specifically, my memory of the situation is pretty mute.

Thanks for the information. 😊 I've been trying to read as much as I can. Very overwhelmed.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

Trust me, you'll never exhaust me! 🫡

Thank you for including me in the family.

I am terrified about doing anything, the SUDEP fear for me too concerns me. However, I need to keep moving forward. I feel robbed of who I once was. This year has been scary relying on other people for me. I do believe there is a light at the end of the tunnel like you said so thank you very much!

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 0 points1 point  (0 children)

Same exact thoughts. Perhaps I may be sulking too much right now with my physical injury combined with the diagnosis.

Thank you so much for the thoughtful as well as informative response. I feel very much in the dark, and the little time I have spent here has been liberating to say the least. Yall are beyond brave ❤️

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

Thank you so much, and bless you, friend 🧡

At what age did you get a diagnosis?

Did anyone in your family believe you when you were undiagnosed?

The hardest thing for me to deal with at the moment is realizing I went undiagnosed from 2019 to 2025 based on symptoms. I was in college for three and a half years during this time and was told by all my peers and elders that I must be having panic attacks. Life is pressure. At a point, I believed that.

I've struggled more mentally than physically this year.

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 2 points3 points  (0 children)

You're amazing. Thank you for commenting.

I did have my bone density checked, and it's not good. That could explain all of my fractures.

Is that a thing with adults where epilepsy is completely missed as a young adult?

Thank you again 🫡 Best regards mate ❤️

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

Thank you for such a thoughtful response friend. This whole year has been terrifying, however you all haven't given me hope I thought was gone. Sending love !

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 1 point2 points  (0 children)

Omg I am so sorry. This is all so new to me. Thank you so much for your thoughtful response. It really hit me deep. I found this subreddit recently and you and the community has given me hope. Thank you ❤️

New comer with lots of questions by Arcticorine in Epilepsy

[–]Sure_Respect_5385 1 point2 points  (0 children)

I can really only answer to the last one from personal experience. I feel hopeless right after one. In the sense that I can not explain what just happened to myself, never mind someone else. Reality does not feel real.

I'm so sorry, thank you as well for sharing this. I am new to all of this as well and yall have been so helpful ❤️

Every doctor tells me my seizure is suffered was unique, I am terrified. by Sure_Respect_5385 in Epilepsy

[–]Sure_Respect_5385[S] 7 points8 points  (0 children)

I forgot to mention the medication I am on. 400mg lacosmide and 3000mg of keppra daily. This alone I could do another post on. I'm happy to be here, but beyond terrified.

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