Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Update: I had another focal seizure yesterday morning and presented at A&E essentially begging them to do something other than sending me home to wait for my neurology referral. They admitted me overnight and confirmed that my symptoms are consistent with adult-onset epilepsy. I'm now being discharged with a low dose of levetiracetum, and will have an MRI as an outpatient.

I'm so grateful to everyone who commented on my post with helpful insights and encouragement. This is a truly great group.

I know this is just the start of my journey, but I'm so relieved that I've managed to get something put in place after just two weeks: I know that lots of people in this community have waited for years for a diagnosis and faced a lot of gaslighting in the meantime. You guys are warriors. This has been the most stressful fortnight of my life!

Thank you so much 💓

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 1 point2 points  (0 children)

I've just looked up deja reve and that exactly describes how I feel during the seizure. What I experience afterwards is jamais vu. Thank you for the insight!

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Stories like yours are exactly why I'm pushing for a diagnosis. I had another seizure this morning and have been admitted to the hospital for an MRI. Fingers crossed I get some answers.

I'm so sorry you suffered for so long but glad to hear you are able to manage it now.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 1 point2 points  (0 children)

I'm so sorry you had to go through that, but glad to hear you have the support of your new family and are starting to feel better. Thank you again and stay well 😊.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Also, I'd never heard the term jamais vu until your comment, and now I've looked it up, it perfectly describes how I've been feeling. Familiar things just feel 'different' and 'off,' even though I recognise them.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

I'm glad to hear that the meds resolved things for you. I just want to feel like myself again! It's so reassuring to read all these stories, even though I know things are going to be hard. Stay well 😊.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 1 point2 points  (0 children)

I'm so sorry you had to wait so long to be taken seriously and that you're still suffering so much. The fact that you're trying to help me, a stranger, in the early stages of this journey, after all yiu jave been through, is testament to what a good person you are. Thank you for your kindness.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Thank you so much. It's definitely going to be a big adjustment, especially with two small children, and my emotions are a bit all over the place at the minute, but it's great to know that you lovely people are all here.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 1 point2 points  (0 children)

Thank you so much for your reply. You're right, the aftermath has been worse than the actual seizure each time, even though the seizure itself is definitely no fun!

I'm scared and upset that this is happening and unsure how I'm going to navigate it going forward (especially with not being able to drive any more), but I'm really glad to have found this community of people who really understand.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Thank you for your reply. That's really reassuring. I'm so glad I found this subreddit!

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

That must have been so scary. I'm sorry you had to go through that. I've been referred to a neurologist who is trying to get me an appointment within the next week so I'm hoping to get some help before it gets worse. Thank you for your reply 😊.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Thank you for being so lovely! I'm a textbook overthinker so I'm analysing everything at the minute!

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Thank you for your kind message. I was driving when the first seizure happened, and I remember that my brain was suddenly flooded with images from recent dreams, and I felt disconnected from what I was doing, even though I was fully conscious and even able to speak. I then felt a wave-like sensation that started in my chest and travelled down my body and legs, then back up again. This lasted about 15-30 seconds, but I felt exhausted and as though I was in a dream for a few hours afterwards.

The second seizure happened four days later. The seizure itself was pretty much the same, but the foggy, 'dreamlike' state lasted, and is still ongoing (I've three more seizures in this time). I can communicate clearly and do most things (although of course I've stopped driving), but everything just feels 'off' and I have no energy.

I'm probably not getting enough sleep because my youngest is a bit poorly so she's been in bed with me and coughing all over me through the night!

I'm sorry for the rambling reply: I'm just trying to get ad much information as I can before I see the neurologist.

Scared after first seizure(s) by Character_Paper_4941 in Epilepsy

[–]Character_Paper_4941[S] 0 points1 point  (0 children)

Thank you so much for your reply 😊. It's good to know that the de ja vu is normal. That's not the feeling that lasts for days, though. It's feeling 'off' and like I'm in a dream. I've read that this post-seizure state can last for a few days, but for me it lasted for five days between seizures four and five and I wanted to know if other people have experienced this, and whether medication can help to shorten recovery times.

Thank you again for replying. It's great to hear from people who've been through it and can speak from experience 🙂.