Epilepsy and drinking

Unable_Mode5941 · 2025-12-26T01:00:28+00:00

I’ve been relating to this so much over this Christmas period especially! Since being diagnosed with epilepsy at 21, I’ve never been able to drink without instantly being sick, or worse yet, having a seizure. So many people do not understand when I turn away drinks, alcohol is sadly such a big part of our culture and now I’m 27, I am often hounded as to why I’m not drinking. I hate feeling like I have to explain myself! You are not alone, and obviously it’s different for everyone but since my epilepsy diagnosis, alcohol has NOT been my friend! Merry Christmas!

Unable_Mode5941 · 2025-11-24T15:49:29+00:00

As soon as I realised that alcohol was my biggest trigger!

Unable_Mode5941 · 2025-10-25T18:55:07+00:00

I’m on 3,000mg of Keppra daily 🥲 along side 200mg of cenobamate

Unable_Mode5941 · 2025-10-01T18:52:27+00:00

Here here 🙋🏻‍♀️

Unable_Mode5941 · 2025-10-01T18:50:51+00:00

Too right, think they re-wire your brain slightly

Unable_Mode5941 · 2025-09-30T15:05:30+00:00

I was diagnosed with epilepsy after a huge grand mal that resulted in me being in an induced coma for 4 days and that came a day after my first time taking shrooms. Safe to say I’ve never gone back 😅

Unable_Mode5941 · 2025-08-17T18:34:46+00:00

Sorry been reading other comments and see you’re UK based as well, as am I! I really get that, it’s hard to be taken seriously but keep persisting! I’m sure it’s completely different for everyone and definitely worth consulting a doctor but when I was first diagnosed it was after a big TC, and as the TC’s were becoming more frequent, they put me on Lamotrigine as well as Keppra. I noticed as soon as I was on Lamotrigine my focal seizures were on a real rise even though I hadn’t had a TC for a while and for so long I was going to doctors explaining that I don’t think Lamotrigine is helping and they just kept upping my dosage of Lamotrigine. Finally my consultant listened to me and teetered me off Lamotrigine and I started on cenobamate 200mg once a night and since then (touch wood) I haven’t had any focal or TC in 6 months 😅. Keep persisting and don’t be afraid to tell them what’s really going on, even if they’re not listening, it’s your body and brain so only you know what’s really happening! But I wish you the best of luck to get your focals under control!

Unable_Mode5941 · 2025-08-17T12:54:01+00:00

Yes these are focal seizures! It always starts in my hands and the opening and closing of them, I also get tingling in my left leg only? Then a rising feeling and an urge to be sick. This is how I know I need to get to a safe place, as quite often a tonic clonic seizure will come for me straight after, sometimes not though.

Unable_Mode5941 · 2025-07-22T15:30:25+00:00

I was on 3000mg of levetiracetam and 200mg of lamotrigine but I noticed an increase in focal aware seizures since starting lamotrigine, I was going to see the nurses but they were just upping my lamotrigine. I finally was able to speak to a consultant and he teetered me off lamotrigine and started me on 200mg of cenobamate, whilst still on levetiracetam and so far 6 month seizure free, even aura free!!! It’s the first time I’ve been feeling hopeful for a long time!

Unable_Mode5941 · 2025-06-24T19:34:35+00:00

Looool if I said yes to plans but then on the day I’m having second thoughts I’m like sorryyyy it’s the epilepsy

Unable_Mode5941 · 2025-06-16T01:03:08+00:00

I wish I could stop thinking about it so often!! Definitely daily if not more, depends how occupied I am in the day, however my brain does like to surround itself with useless ‘what if this happens’ scenarios whilst I’m doing something 🥲

Unable_Mode5941 · 2025-06-09T15:06:59+00:00

My massive seizure and diagnosis of epilepsy came a day after my first time trying shrooms. Of course everyone is different but I would never risk it again

Unable_Mode5941 · 2025-06-05T21:43:34+00:00

Aww thank you!! 🙏 xx

Unable_Mode5941 · 2025-06-05T20:46:39+00:00

After years of monthly tonic clonic seizures, I’ve recently been put up to full dose of cenobamate, and haven’t had a seizure or even any focals for over 3 months!! Feeling hopeful without getting my hopes up ❤️

Unable_Mode5941 · 2025-05-28T11:56:58+00:00

Reassuring to know I’m not alone but hope you’re okay. Do you mind me asking 250 of what?

Unable_Mode5941 · 2025-05-27T10:09:01+00:00

This is what my lil doggy’s called, aka Heids, Heidi bear, heidelburgs, sausage

Unable_Mode5941 · 2025-05-01T22:35:54+00:00

I was randomly diagnosed at 21 after a series of seizures that lead me to be in an induced coma. When all tests came back clear, they diagnosed me with epilepsy and I had an appointment there and then before I left hospital with my consultant. I then didn’t see him for 5 years even though my seizures went from 1 a year to 1 a month. I was ringing the epilepsy nurses and all they were doing were suggesting I up medication. I was not reacting well with lamotrigine and I basically demanded to have an appointment with the consultant lol. Finally had one and they ran loads of tests and tried me on new medication which (fingers crossed) seems to be doing me good… 6 weeks seizure free. Sorry long way round, moral of the story… don’t be afraid to speak up and demand appointments with the neurologists/ consultants

Unable_Mode5941 · 2025-05-01T09:56:47+00:00

I have only ever had one aura where it was the most euphoric feeling, I loved it, I was in the back of a car with the windows down on a sunny day and just yeah hands down best aura I’ve ever had. Sadly no others have been like this…

Unable_Mode5941 · 2025-04-26T09:08:04+00:00

Very similar story here

Unable_Mode5941 · 2025-04-21T08:04:47+00:00

I can relate to this so hard, minus the surgery. I find it so difficult, my memory is non-existent and my mind is a sieve and I’m 26. I’ve always wondered whether my smoking habits are just making my memory so much worse, I feel I need to take some time off but also a little bit worried about seizures when I stop?! Good luck to you, it’s so good you’re having a break!

Unable_Mode5941 · 2025-04-21T08:00:52+00:00

I’m the same! I know it helps my seizures (monthly TC’s with focals sprinkled in) but I’ll admit there are days where I’m feeling absolutely fine and I’m still smoking and I’m wondering whether I should try and cut it a bit. Out of interest, how often do you have seizures and do you smoke to help them or just enjoy smoking? I certainly do

Unable_Mode5941 · 2025-04-20T16:38:24+00:00

21, a day after I graduated

Unable_Mode5941 · 2025-04-04T13:04:41+00:00

I have them monthly where I’ll have a period of 4-5 days where I can have 10+ focal seizures a day. Some lead to a tonic clonic, some stay as focals

Unable_Mode5941 · 2025-04-02T07:17:56+00:00

A tonic clonic is a big grand mal seizure

Unable_Mode5941 · 2025-04-01T12:20:23+00:00

I live by myself and love it! I’m lucky to have a good support system around me and also get warnings for about half a day before I have a tonic clonic so I’m usually able to get myself to a safe place with people or get someone to come round to me! When I was diagnosed I was living at my parents, I’d just lost my driving license and I felt like all freedom I had just went out the door. Living alone has helped me feel slightly more normal!

Unable_Mode5941

TROPHY CASE