abbiesepilepsy

abbiesepilepsy My name is Abbie, and I have Epilepsy. This is my journey 💜

Anyone else had an injury after a seizure that lasts “forever”? I still don’t have full function of my right arm after 2...
25/02/2026

Anyone else had an injury after a seizure that lasts “forever”? I still don’t have full function of my right arm after 2 months, and 3 professionals think I’ve torn my rotator cuff. Off to get an xray. Hoping that’s it. Maybe a steroid injection. Now I’m rambling. Ok bye 💪🏽

Well it’s nice to post a different selfie to the last one!I’ve had another really tough week, but it’s also been good. I...
05/02/2026

Well it’s nice to post a different selfie to the last one!

I’ve had another really tough week, but it’s also been good. I’ve done really well at work and got some really cool projects that I get to lead.

I’ve joined several epilepsy support communities on Facebook and WhatsApp over the past month ish and speaking to all these people has really put my mind at ease. We all understand each other! It’s amazing! Aside from the incredible friends I’ve made in the last six years on this account, it’s so great to e-meet new people and hear other stories. There’s no better feeling than when someone understands exactly what you’re going through, even when you can’t explain yourself properly.

WE’VE ALL GOT THIS!!! 👊🏼💜

One month seizure free.I never thought I’d have to start my clock again, but here we are. I also hate when people take p...
26/01/2026

One month seizure free.
I never thought I’d have to start my clock again, but here we are. I also hate when people take pictures of themselves crying but this is an honest profile, not an influencer platform.
Mentally, I’ve had a really s**tty month. I’m confused, I’m overwhelmed, I’m scared, I’m in pain, I’m exhausted. EXHAUSTED. It’s like my body has forgotten how to recover and heal. I’m barely sleeping - I always make sure that I go to bed at a decent hour allowing me to get at least 7 hours sleep, but I’m lucky if I get 5. Even when I work from home, meaning I can get an extra hour, I still can’t sleep. I’ve tried cbd gummies but they don’t work. My arm is still in pain from the seizures and it took me 3 weeks to ask for help. My new physio thinks I’ve torn my rotator cuff and my pt thinks I could have a hairline fracture somewhere in between my shoulder and my elbow. Also another reason I’m not sleeping. I’m trying SO hard to put on my brave mask but I’m just not over the fact I’ve had to start again. I have an amazing supportive husband who cares and loves me beyond anything I could ever dream of, incredible parents, and some great friends who check in regularly. So why do I feel so meh?

The year I (legally) married my man 🤍 the support you’ve given me, especially this horrific past week, is unmatched. Mor...
01/01/2026

The year I (legally) married my man 🤍 the support you’ve given me, especially this horrific past week, is unmatched. More than I could ask for from a husband. May our journey only be smooth, and I hope we can get my medications right before we start our married life. I love you to the moon and back 🤍 you ask all the right questions and make me feel so safe. 2️⃣0️⃣2️⃣6️⃣ will do wonders for us - mentally, physically, medically, romantically, and just all over greatness. Wouldn’t change you for the world!

I was preparing to post something about being seizure free for six years in January.Today, I had my first seizure since ...
26/12/2025

I was preparing to post something about being seizure free for six years in January.

Today, I had my first seizure since 6/1/2020. My husband had never seen a seizure before. He called both of my parents, who spent hours with me making sure I was ok. I’d recently gradually stopped taking my Briviact under the supervision of my neurologist but now I’ve started taking it again.

I’m GUTTED. I was doing so well. I feel like I’ve failed. I’ve obviously bashed and bruised myself, but I’ve also broken my front tooth!! Really attractive. Looks like I’ll have an expensive dental bill soon. It’s really attractive. Guy found the piece that broke off. It’s on our kitchen table.

I seriously need some support and comfort from community right now. How do you cope? How do you accept what’s just happened? How do you start again?

Hiiiiiii has anyone experienced Briviact Rage? Like Keppra, but Briv. Ya know?
02/10/2025

Hiiiiiii has anyone experienced Briviact Rage? Like Keppra, but Briv. Ya know?

4 years
05/01/2024

4 years

So I’ve been through a lot this year. I was diagnosed with obstructive sleep apnea, had my Briviact reduced by 25%, star...
14/12/2023

So I’ve been through a lot this year. I was diagnosed with obstructive sleep apnea, had my Briviact reduced by 25%, started a weight loss journey and have lost 12kg so far, flew to Barcelona to see Springsteen, discovered a horrendous fear of flying and claustrophobia, got into a relationship that I feel so lucky to be in, had some great moments with my grandparents, had some friendships that went sour, went abroad more than once, turned 30, AND my country went to war - we’re on day 69 and I had to fly back to the UK and have moved in with my boyfriend for the first time at my mum’s house x

The stresses I have felt this year have been astronomical, but the support I have had from my loved ones has outweighed it hugely. The biggest success for me? I went to see my neurologist at Queen Square Institute of Neurology for the first time since my last seizure almost four years ago, and we had some amazing conversations. We discussed my medication, my anger issues, my cycle, my pregnancy concerns (not preg, making that clear), and what my path looks like for the future. We decided to reduce my Briviact AGAIN - drop 50mg in the mornings and another 50mg in the evenings in one month if I am feeling good, and coming off clobazam completely due to increased risks with pregnancy and just general “I want to take as few meds as possible”. I am over the MOON. I still need to see an endocrinologist, which I was expecting and totally fine with, but what I heard last night was more than I hoped.

2024, I am so ready for the challenges you will throw at me. I am expecting a lot of personal growth, both mentally and physically, with a support system around me that I could only dream of. My friends who have been here for me this year through everything, I love you with all my heart and soul and you are my chosen family. To the people I am now distanced from, I truly wish you the best; seasons and reasons and all that s**t.

I’ve only learnt in the past couple of years *how to say no* because I’m putting myself first instead of my social life....
08/08/2023

I’ve only learnt in the past couple of years *how to say no* because I’m putting myself first instead of my social life. One thing I know we ALL find extremely difficult is opening up to people about our struggles, our confusion, and our pain.

Yesterday, I met someone for the first time (in person, can you believe it?!) who has a recent epilepsy diagnosis. You have NO idea how incredible it was to be able to story share face to face and not just through a screen. We ended up sitting together for around 2.5 hours and I can safely and honestly say that we could have sat there all day.

This is what can happen if we ask for help and put our egos aside. Don’t get me wrong, I know it’s extremely hard doing so. All it takes is one text or call. Just one! You’ll feel like a whole new person, trust me 🤍



📷

Hi today I’m 3.5 years seizure free 🥹💜 all your support since I’ve started this account has been extremely meaningful, a...
05/07/2023

Hi today I’m 3.5 years seizure free 🥹💜 all your support since I’ve started this account has been extremely meaningful, and I hope I’m helping you in the same way you’ve all helped me ###

Throwback to when my   got reduced   💜
26/03/2023

Throwback to when my got reduced 💜

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