All Shook Up_My Epilepsy Journey

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All Shook Up_My Epilepsy Journey

Hi there! I'm Andrea White, and this page is about my experience with adult onset epilepsy.

I started having seizures out of nowhere in August of 2019 when I was 40yrs old, and this is about how I've handled doctors, medications, side effects, etc...

30/08/2025

How long do your focal aware seizures usually last in total? Mine are around 15 minutes including aura, “full on seizure” (for about 2 minutes), and postictal. Hope you all stay well and seizure free!💜💜

This is a focal aware seizure I had that stems from a lesion on my occipital lobe. Unfortunately my epilepsy has been deemed inoperable, and controllable by ...

22/01/2025

Does anyone else struggle identifying what type of seizure they just had? I think this is my first “focal impaired awareness” seizure, because watching the video back, I only saw the spasms / convulsions affecting one side of my body. Whereas with my tonic clonics both sides of my body spasmed ( and je**ed, and I groaned, and all that fun stuff). It would be easier if my body would just stick to one…or none!!!🤪💜

This seizure threw all kinds of new curve balls at me, ones I hope I never have to deal with again! ...

09/01/2025

Anyone else get frustrated when their “seizure free streak” gets broken? Mine lasted a whole 3 months. 😕💜

Had a nice run of 3 months seizure free, but got woken up in the middle of the night with a different kind of seizure that was rare for me.

26/08/2024

Has anyone had any luck with medical ma*****na and their epilepsy seizures? I’m just starting my journey myself, and am skeptical, but hopeful. If you want to see what it’s been like for me so far, you can check out my video down below. 💜💜💜

In this video, I talk about all I went through to get approved for this medicine and what it’s been like this past month taking it. I also open up my first r...

09/07/2024

Anyone else have seizures that start off with an aura that includes a flashing light in your vision? Here’s a video of me describing mine in great detail, just to see if anyone can relate. 😊💜

This seizure from my epilepsy started in my occipital lobe and is a focal aware one. I throw up some descriptions as I go through it to try and explain what ...

21/06/2024

Does anyone else have an app similar to this that makes it easier to talk to your doctor about visits, medication changes, or just questions in general? In this quick video I show what I’m able to do and see with my app that lets me communicate with my epileptologist. Even better is I don’t get charged for an office visit when using this lol!

Showing you the ins and outs of how easy this app makes it to communicate with my epileptologist who is 2.5 hours away.

09/03/2024

How many medications / dosage changes have you been through to get your epilepsy under control? If it even is under control? In this video, I show a small sampling of the different meds and changes my doctor and I have tried, just to show there is no quick and easy fix, for some people that have been asking. Although I sure wish there was!!! 💜💜💜

Just a small sampling of some of the seizures and medications I’ve tried to control my epilepsy over the past 5 years. My doctor has said we have about run o...

07/02/2024

What do you call a tonic clonic where you don’t lose consciousness? This seizure started out as a focal aware, but towards the end, it had alot of the makings of a tonic clonic. All my muscles stiffened, then full muscle spasms / jerking, I stopped breathing, face turned purple, yet stayed conscious and aware the whole time.

I’m sure theres a name for it, and I’m not unique in this, but it was definitely rare for me lol!

Had my usual focal aware seizure, and some unexpected tonic clonic like symptoms near the end, while staying aware the whole time. This is very rare for me.

09/01/2024

Word to the wise, don’t be silly like me and forget to look at the possible side effects on a new medication. You might just end up with one of the “serious” ones and have a heck of a time getting rid of it! Anyone else make this mistake?💜💜💜

Serious allergic reaction to epilepsy/ seizure medication Xcopri causes doctor to seek additional help fast!Music: WanderMusician:

28/12/2023

Has anyone else had a focal aware seizure turn into a tonic clonic one, or are they usually just going straight into tonic clonic? Here in this video I show all 4 phases of my seizure, especially when it switches from focal aware to tonic, (and believe me I was surprised when I came out of it that that had happened!!) Let me know if you can relate and hope we can all be seize free soon!💜💜💜

Full video of my grand mal / tonic clonic seizure with all 4 phases, and descriptions of each. (aura, tonic, clonic, postictal)

18/12/2023

Anyone else running out of medications to try and having to start considering VNS or brain surgery? I really thought I at least had my tonic clonics under control. ☹️💜💜💜

Thought I had my tonic clonics under control, but this one I had on 12-18-23 proved otherwise.Let me know if you like to see the full 12 minute video that in...

11/12/2023

Just thought I’d share how my epilepsy medication was causing my sudden depression, and I was completely unaware. Luckily I finally mentioned it to my doctor, and she recognized it immediately. So check out my video below if you would like to hear how I went through that spiral, and came out the other end. Hopefully this might help someone else realize they might just be having side effects that can be quickly resolved, and you just need to communicate with your doctor. Hope we all can get and stay seizure free!!💜💜💜

After months of a slow mental decline, I finally detail what I thought what was happening, only to have my doctor figure it out in seconds.

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