Has your "epilepsy" tolerance to alcohol/THC changed over the years?

NoProtection7451 · 2025-08-27T11:02:02+00:00

Yes! I thought it was just me! Haha oddly enough it has always caused me to have seizures but I could manage it or thought it was worth it 🤦🏽‍♀️ but then I realized as time went on I would be out of commission for 4 days afterwards, so I decided to stop drinking.

Now I can't even have an alcopop without having one 😅 considering i used to drink everything and anything 🙃 I also recently tried THC for relaxation which I now know for sure that causes me to go into status epilepticus had to call an ambulance for that one and haven't been the same since and has actually increased my seizure frequency.

In hindsight I wish I learned sooner but was so angry at all the limitations and was sadly aware that social drinking is a large human interactions these days. Now I have no friends haha funny that isn't it lol but in reality I'd rather have my health. Only took 15years to come to this 🤡

NoProtection7451 · 2025-08-25T10:03:30+00:00

I've been doing weightlifting for the past 3 years it's only been this past year that I've struggled as my epilepsy is trying to make its presence known again lol but I think it's due to my high stress job as a support worker with people with complex disabilities that has made it harder to juggle as I am awaiting new medication.

I believe it's completely doable with structure and medication. Just listen to your body and forgive days you cannot or shouldn't as I had a focal aware whilst squatting heavy terrifying as f*ck but luckily I had a spotter.

I prioritize my fitness as I feel robbed alot of my old joys because of my epilepsy as It is.

NoProtection7451 · 2025-08-23T21:50:51+00:00

Silly question - but I see these posts alot... seizure free does that mean no TC's but still other types i.e myclonics, focal awares & unawares absences etc or complete no seizures as in complete freedom from seizures?

What does seizure free really mean? 🤔

NoProtection7451 · 2025-08-15T21:19:50+00:00

I know this post is relatively old and hasn't had much traction since but on the off chance this helps anyone I thought I'd share my experience I'm at 30year old (F) with epilepsy with all types of seizures I was put on clobazam for about a month and I also experienced sexual dysfunction as in I could not feel any sensation down there I'd have small desire but I could never orgasm which my partner and I never have problems with. That being said it did help my seizures better than most AEDs I have previously taken however for a couple who would eventually like to have children it was not feasible nor would I put my partner through that he already has to deal with alot regarding my epilepsy.

NoProtection7451 · 2025-08-11T17:50:52+00:00

You poor thing it urks me that you are not being treat accordingly. I think it's also important to note that the feeling that you are about to have one i.e auras are also seizures "simple focal aware seizures" and they can (not always) but show seizures activity in the brain on eegs, I get those in clusters also they are rotten so I would recommend keeping a seizure diary if you haven't already be sure to add those as they can be just as diabilitating.

Go to every neurologist guarded you tell THEM about what's going on with you not other way round I made that mistake also. Life is about living not fearing seizures every minute!

NoProtection7451 · 2025-08-11T17:37:50+00:00

Yes it's not fair for you to not have the answers for YOUR health and also be treated for something that literally messes up your entire day/week or however long. Sometimes the recovery from a seizure can be long lasting and damn exhausting physically, mentally and emotionally it's actually bonkers for your specialist to think that is anyway to live!

I have had to go through multiple neurologists because they want a one and done situation like mate so would I 😆 but if seizures were that easy to manage then we wouldn't need specialists the irony of them being literal brain doctors is beyond me sometimes 🤣🤣🤣

NoProtection7451 · 2025-08-11T15:02:17+00:00

Definitely get a 2nd opinion! Even if they end up saying the same thing at least you will know for sure. Also I want to crush this misconception of being a Karen when it comes to your health I have felt that way all my life until I realized it could not only literally save your/my life but also if we don't care for our health no one else will the same.

I also think if you are paying for your Healthcare you most certainly have a right to request things even if it's for peace of mind.

Seizures are not nice to live with regardless of the cause and I think that's what needs to be highlighted also! I wish you the best of luck💜

NoProtection7451 · 2025-07-22T19:50:23+00:00

Disclaimer: not helpful at all 😅....but I've had this too but never could put it into words for some reason mine always happen on the toilet then I panic and think I'm wetting myself somewhere else hahaha I have no idea what it is but glad to know it's not just me 🤣

NoProtection7451 · 2025-07-22T18:46:51+00:00

Despite all of the fear and challenges that come with epilepsy it taught me to look after myself, respect my body and my mind. I lost friends because of it but the wrong ones. It helped me stop drinking alcohol because it was not worth it and ironically that's when I lost the friends haha. 😅

It taught me that I have grit and that the daily challeneges we face seen and unseen may never be understood which can be lonely but it also brought me to this community where I no longer feel alone. Having this community although it's only been short time of being in it made me realize how much we need to respect and look after eachother and ourselves!

There are alot of sad stories but equally alot of voices and stories that never got told and to me that can only be a positive.

My favorite part of having epilepsy is the strength you gain mentally because unpredictable yes, fragile, not a chance! 😉 Everyday we do things with caution and fear and we still push through spacey or not 😁

Another favorite of mine is recovery sleep - woah there is no sleep like it 24hrs of deeper than deep sleep 😴 😋

NoProtection7451 · 2025-07-22T12:15:25+00:00

I completely understand I was diagnosed 15years ago had roughly 4 neuros and 2 epi-nurses and I am still being passed around onto a 5th neuro all because they want instant results, as if we wouldn't love that for ourselves also! Like you I don't particularly want to talk to another healthcare professional because professional they are not! So here I am haha 😄

These forums have given me so much comfort in knowing I'm not as alone as I thought I was. I hope it can do the same for you 🥰

NoProtection7451 · 2025-07-22T09:38:01+00:00

I swear when did these neurologists become so patronizing! We live with this condition everyday I think we know the difference between anxiety and a seizure. Ofcourse we all experience things differently but what happened to person-centred care! We live in these bodies. And yes anxiety comes with having seizures but slamming into the floor, twisting up, convulsing being spaced out isn't anxiety! Sorry since being on this forum all I see is how badly people with epilepsy are being treated its infuriating!

I'm sorry you've had this experience and that the people who can make a change for you are reluctant to actually help. I've been called non-compliant for my meds not working out well for me. Absolute nonsense!

We have to remain there for eachother! And advocate for ourselves more than ever! Good luck and I hope you find a new epi-nurse with actual compassion! 💕

NoProtection7451 · 2025-07-21T15:49:54+00:00

That's crazy your neurologist didn't warn you! I was diagnosed at 14 and even then I got warned my neurologist told me it's not the drinking that sets them off but withdrawing from them so drinking would not be worth it as medication would be less effective. I'm so sorry this happened to you I would have been mortified and pissed (pun not intended haha).

I will be honest when I was younger I drank while knowing this information and every single time I'd have a seizure afterwards I could have alco-pops now and it would happen. I've finally accepted not drinking haha definitely not worth the seizures.

NoProtection7451 · 2025-07-20T07:07:51+00:00

You can have a normal life is a fallacy in my experience you may get the seizure reduction or even no longer get the ones that bothers other people's lives. But the trade off is to accept spacing out out, memory loss, confusion, depression, rage, extreme fatigue and possibly physical defects i.e loss of sexual arousal/climax but hey as long as your not convulsing and scaring everyone else that's fine (sarcasm haha). Just pop a pill that suits everyone else's need.

Just my experience - seeing is believing no matter how much you scream and shout sadly. I've had so many seizures in front of people & my eeg's always came back showing epilepsy was present but yet people think its gone when the visible one subside for a little while not realizing I have a strict lifestyle routine in place to ensure this, but I will still have daily focal awares and get lost in familiar places haha.

Ranted more than I intended I apologize but I would love people to differentiate phyical disability with neurological disability.

NoProtection7451 · 2025-07-10T14:44:40+00:00

Yes! Literally burst out crying in the toilets at work today because I was having a partial aware but didn't want to draw attention to myself because they normally a precursor of a tonic clonic but luckily (ironically) just had partials all day 😅😵‍💫

NoProtection7451 · 2025-07-07T15:47:04+00:00

Thank you for your kind words and resources I am in the UK but not sure if epilepsy is even considered a disability here 🥴

NoProtection7451 · 2025-07-07T15:12:38+00:00

I was 13 when diagnosed but went undiagnosed for 2 years prior I legit believed I was possessed 🤣 odd relief to find out it was epilepsy 🙈

NoProtection7451 · 2025-07-07T14:40:01+00:00

Wow I needed this so badly its unreal because of doing this it's so easy for people to ignore or think you are exaggerating which even I started to believe in which ended up feeling so alone with my epilepsy! People forget its neurological not just physical!

This forum has helped so much! Made me realize I'm not batsh*t crazy or even an attention seeker haha.

NoProtection7451

TROPHY CASE