My Epilepsy Story // Tonic-clonic seizures

Hiya!
I’m Ellie and this channel follows me on my journey through life, navigating chronic illness and disability in a world that wasn’t designed for us.This is my Epilepsy story from my first seizure up until now. I hope it helps someone out there.
Some links that you may find useful:
www.epilepsysociety.org.uk/
www.youngepilepsy.org.uk/
www.epilepsy.org.uk/
Instagram: @Small_and_strong

[@Hoocheleven]

Dad comment: To Mums, Dads, family and close friends. Learn first aid!! Epilepsy can be harder on you than the person having the seizure. A lot of the time, for Ellie it was like going to sleep. It's YOU who had the real drama of it, and trust me it's stressful. The next day she would often be bright and breezy, wondering what all the fuss was about; when you've spent the night watching the heart monitor and listening to every breath!! Next day she was at Uni, I was completely mentally and physically washed out! P.S. Ellie sounds like she partied and drank alot. She really didn't; it only took a very small amount of alcohol and a couple of late nights to giver her a seizure. At least that's what she told ME at the time!

[@Cubi__]

What a great dad love you bro

[@jamiepeters7818]

Thank God she had you by her side to help her. You are right it is worse on the person watching. My 13 year old can vouch on that and so can my husband. 😢

[@jamiepeters7818]

Thank you so much for sharing your story. Im over in the US. Its amazing how many different types of seizures people can have. 3 months post having my baby 13 years ago, I had 2 tonic clonic seizures within the month due to mal nourishment and chronic fatigue. I wasn't eating enough and breast feeding and definetley not sleeping because i was the one always waking up with my baby. I decided to start eating everything because I was so scared of having a seizure again. I gained weight but no seizures! My mom-n-law was there the first time and thought I was gonna die, my husband was there for the second one. It is so scary for me because I dont have signs of aura. So this was 13 years ago. My daughter was diagnosed with absence seizures when she was 6 years old. Her doc says she can out grow them and I hope she does, but to know I couldve passed this to her is devestating to me. Luckily she has never had a grand mal. Then this last year 2024, I had a seizure with my poor daughter there who is 13 years now. I have no signs I am going to have one. Then a few months later I had another one. Both times I had been stressed yes and maybe not enough sleep but also for both seizures the night before I had margaritas with tequila obviously. The first time I wasnt on medication because I didn't know I had Epilepsy. After that though I went to see a neurologist and was put on Keppra and couldn't drive 3 months which was hard being a stay at home mom. The second one my hubby and I went to the same restaurant same margarita and the next day we left at 4am to go fishing and the lake is an hour away, 15 minutes before arriving to the lake I had a seizure in the truck and it took me 3 hours to realize what had happened. I decided to also make a change. More sleep, less sugar, delegate chores and errands to reduce stress and no alcohol at all. I've been seizure free after making these changes and making sure to take keppra and hope to never have a tonic clonic again. Fingers crossed. I am glad you are seizure free and hope you live a long happy life. Thanks again for sharing. Its nice to have a community that understands what we go through because those around us dont. My daughter has some PTSD because of what she witnessed with me which makes me so sad but I have her in therapy. But she also thought her mommy was gonna die. Thats probably the worst part. I'm in tears now because I dont want to die from this brain disorder. There is nothing more scary than not knowing when a next one can happen. No triggers. Im just being as careful as I can. 😢

[@MartySalo]

Thank you for sharing. I worry about Senator Mitch McConnell over here in the United States, I think there may be some absence seizures going on. I am a traumatic Brain Injury Survivor, only one tonic clonic seizure at the scene of the accident. 40 + years later, I avoid alcohol, and pretty much sleep alot most nights. Bruxism, teetch grinding was something. I sleep with two night guards. Oh well. Also have many dental crowns. Over in the US, we don't have universal healthcare, so I am lucky to have done as well as I have. It sounds as if you are also very fortunate to have the support network around you. Best of luck.

[@ALACGltd]

Thank you for sharing. I have cerebral palsy and have had seizures. You’re very easy to understand. Wishing you well

[@AlfLuck99]

In the same boat:) 22 year old and never had a history of it and bam out of the blue! :/ Tonic-Clonics scary sight for my family. Lets fight this chronic illness

[@Rebecca-sx5vg]

Thanks for sharing. Good job taking ownership of your life. I’ve had epilepsy since childhood and it’s only gotten more challenging as an adult… work stress is my #1 trigger. College was easy compared to being an adult with actual responsibility. I get lots of sleep, moderate exercise, practice vagus breathing, no alcohol, I work remotely, I don’t drive, but I still have break through seizures every few months. It’s really tough! And it makes relationships VERY difficult (I am divorced; my ex partner was not a compassionate caregiver so it was a very stressful relationship). I don’t have kids either, but I always wanted to be a mom. It really impacts everything in life:( just stay strong and take care of yourself.

[@jomackenzie104]

So pleased to hear you're now seizure free, that rocks! Stand Strong Small Warrior 💪💜

[@SmallandStrong66]

Thank you so much!

[@emilyjames3110]

@@SmallandStrong66 so in-depth in advice for like friends who suffer

[@ElinorBrown]

Wow !! I definitely learned a lot about seizures and epilepsy !! I’m so glad you are managing to control your lifestyle to drastically reduce your seizures. I didn’t realise seizures could be affected by alcohol and exhaustion !! This was a great video !! I’m subscribing can’t wait to see the next one !! 💕💕

[@SmallandStrong66]

That’s one of the crazy things! Seizures can be triggered in all sorts of ways! Thank you for the support hun 💕

[@brianschroeter2105]

I didn't take it seriously at first and wasn't taking My medication but I learned the hard way

[@Cubi__]

The quality of this vid is insane u should become famous for sureee

[@ALACGltd]

Laughed so hard when you said tequila. I knew. Hahahaha bless you

[@summerparrismusic2132]

Love this, you go girl👏🏽 you also look beaut

[@SmallandStrong66]

Thanks sumss xx

[@jamienevill1768]

Thank you for sharing this. I hope you're still seizure free. I have a slight time advantage over you in the fact that I had my first seizure a few weeks after my 49th birthday. It happened totally out of the blue in the early hours whilst I was working on my night shift as a machine operator. Because I had several in succession, I ended up in hospital. Epilepsy was confirmed five months later after more seizures (although tests showed nothing unusual, which can happen). Thanks to various medications, which are also to treat other neurological 'malfunctions', I have been seizure free for just over three and a half years. Take care 👍 ☺ 💜

[@SmallandStrong66]

Hello, yes I am still seizure free thankfully. I am currently controlled by medication

[@jamienevill1768]

@@SmallandStrong66 that's good to hear. Take care 👍 ☺ 💜

[@user-bv1ec5qr3m]

I’m so pleased ur doing well, I’m 18 as well, spent my birthday in kings college hospital

[@Smitho94]

I was diagnosed when I was 16 (10ish years ago). I’ve never really spoken to people about it, what it was like being diagnosed etc, or even looked up other peoples experiences until now. Thanks for sharing yours. Also sounds like we had a similar university experience lol!

[@SmallandStrong66]

Thank you, comments like this are why I'm so open about my journey

[@AIZHALEEPERFECT]

God bless you beautiful 💜💜💜

[@katieannamcconnell5365]

Thank you for sharing! Could you do an “about my seizures” video? What they look like/ what causes them/ what it feels like for you etc? X

[@SmallandStrong66]

Might have to do this video idea with my dad!

[@brianschroeter2105]

What I hate about about having seizures is not remembering anything at all that I did and constantly having pain in My gut where I am left bent over and also pain in my chest area, can't move certain parts of my body and a real headache I've also bitten my bottom lip and the edge of both sides of My tongue and I sleep for long periods.i have also been diagnosed as having epilepsy last year by my neurologist and this is year 8 and I'm 49 now soon to be 50

[@shannongreenwell1278]

I have Epilepsy and I have GTC’s ( Generalized Tonic Clonic) and my doctor had to add another medication to my first one because I had three seizures at my work last year. Flashing lights are my triggers and other things, if I get sick and I throw up too much I have them.

[@brianschroeter2105]

I don't party or smoke weed now I never was a drinker and I only smoked weed and I've stopped for about 3years now,I don't know what caused me to have seizures because before the age of 42 I never knew what was a seizure.i used to work on a garbage truck and it first happened on my way to work and I woke up 3 days later.

[@joanne0862]

I've had it since I was 6 years old and I'm 28 now

[@KCsBabies]

You have some really good friends 💝💐

[@SmallandStrong66]

You’re not wrong!

[@brianschroeter2105]

I have no real support,I haven't worked in the amount of time I started to have seizures and I'm left having to be asking for food/help and I feel like I'm begging and less than a man because I know that is not me.

[@drishtivashist7339]

It's actually terrifying, how similar our situation is . The worst part for me is my memory 😔 and as a student really effects me

[@SmallandStrong66]

Memory is one of those things that you have to find your way around. Some things I’ve figured out and some I haven’t

[@LittleCutieABDL]

Curious to know did they base the diagnosis on just presentation alone or did the EEG show any abnormalities? I’m on a similar boat; hope you are doing well my friend

[@SmallandStrong66]

yes, my diagnosis is based on the amount of seizures that I had. The EEG didn't show anything as being wrong and I know lots of other people with epilepsy in the same situation!

[@LittleCutieABDL]

@@SmallandStrong66 Thank you

[@DiariesofaDisabledmom]

I have epilepsy but I've had it my whole life. Been trying to find more ppl to watch and hear their stories. Does ur dad edit the vids cuz the comments in the video are killing me lol my short term memory is shot.

[@SmallandStrong66]

No I edit the videos he just does his comments 😂

[@FullTimePatient37]

I'm sorry...I know how you feel ❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹

[@SmallandStrong66]

Thank you x

[@sweet_sparkle12]

Hey!! Pls tell me how r u now sezuire free?

[@SmallandStrong66]

I am on medication twice a day that controls my seizures

[@bhawanakandpal7693]

Try breathing techniques it really helpful ✊stay safe

[@SmallandStrong66]

I'll give it a go, Thank you!

[@robertdeffenbaugh9004]

I don’t understand why you said you are grateful you don’t have Photosensitive Epilepsy when Photosensitive Epilepsy isn’t so bad because I had my Seizure Tumor removed when I was 8.

[@SmallandStrong66]

Because personally my epilepsy cannot be ‘cured’ as I don’t have a tumour and my job involves a lot of lights and lighting effects so I would have to re-train in something else