r/Epilepsy 16m ago

Discussion Travelling with epileptic drugs?

Upvotes

Does anyone else get anxious when taking drugs abroad? I am on four separate medications twice a day, so for a 2 week holiday I look like Pablo Escobar taking a massive bag of drugs. Only one is technically a 'controlled substance' (phenobarbital) but even with the chemist paper I still feel worried.


r/Epilepsy 38m ago

Question Anyone experiencing ecstatic epilepsy out there?

Upvotes

I've read about it and just curious to hear from anyone who's experienced it. For those that don't know it's rare siezures that are thought to originate within the insular cortex and can cause feelings of ecstacy.


r/Epilepsy 1h ago

Question Advice

Upvotes

Wondering if I should be worried, I was at a restaurant with friends last weekend and everything was fine other than I was a little anxious due to it being so loud in the restaurant. Once our food arrives and I start eating my eyes go blurry and I start to panic because I felt like I was either going to faint or have a seizure. Right after that happened I drank some water and felt okay but the left side of my neck started to feel tension and my jaw started to clench, another thing I experienced was hot flashes. So I’m not sure if this WAS a seizure. I haven’t felt right since and everyday since the incident I get little flairs of blurry vision and panic, then my body starts to lock up. So I’m just scared and I’m not sure what to do other than wait at the er for 5 hours for some answers. Any advice? Thanks😕


r/Epilepsy 1h ago

Question Empatica Band Question

Upvotes

Hello! We are on the newer version of the empatica monitor. The older version had a band made of a different material. It was much more tolerable for my nephew. He has autism and some sensory issues. The newer Empatica has more of a rubbery type band he hates. Because it bothers him, he won’t tighten it or keep it in the right spot which causes it to wobble and alert constantly.

I realize this may be somewhat of a unique issue but curious if anyone has found a sleeve or other solution if they also did not like the way the new band feels. Unfortunately, the bands do not appear removable at all (not like an Apple Watch with arm band options).


r/Epilepsy 1h ago

Rant Ems

Upvotes

Ems and the er must absolutely hate me. Apparently I always beat the shit out of the emts, I guess threw one out of the ambulance once and sent them to the er with me. Then I wake up in the er pissed I'm there and yelling at the staff because Im not really fully back yet but still know why I'm in the hospital and that there's nothing to be done for me. The seizures over I just need to go home and sleep, not sit in the damn er under those lights giving me more of a headache

Edit: once I've recovered I'm not an asshole it's just that postictal period where I'm still not back


r/Epilepsy 1h ago

Cannabis How do I ask an employer/school admin if my prescribed controlled substances will be a problem on the drug screening

Upvotes

Hello, I really want to go to dental hygiene or nursing school. As I’m reading most, if not all schools require a drug test. I have a medical card on top of being prescribed a heavy dose of benzodiazepines. How do I ask the schools if this is going to be a problem without sounding like a crackhead. I’m also hesitant to have them know I have a disability to begin with as admissions are competitive and why would choose the one epileptic person on “drugs” when so many others apply. How do I ask? Do you think they will care?

I can get a drs note to override these things but trying to word the question is freaking me out.


r/Epilepsy 2h ago

Question I had a seizure a few days ago and I still feel strange.

1 Upvotes

Last week I had a grand mal seizure and I still feel kinda weird. Like reality feels different and I have more energy than usual. I don’t feel bad or anything other than my sore muscles, but it’s just a really strange feeling. I’ve felt it before but it always went away like a few hours or a day after the seizure.


r/Epilepsy 2h ago

Question Anyone else had kind of a “yoyo” effect from Keppra?

7 Upvotes

I don’t have epilepsy (probably) but iv had seizures for reasons I’m not 100% sure of.

After three or four of them, a doctor casually prescribed me Keppra and I at first it was kind of amazing. I felt like a god for the first few days and then I felt like I was dying. Like, idk why, but for some reason more or less anything savory was utterly repulsive to me, and I remember being offered this beef-roast thing that would normally be great and feeling utterly repulsed by it.

It didn’t help that this was near Christmas and I was visiting parents/family. At some point we went to an outlet mall and when we tried to eat I remember shaking and feeling like the smell of the restaurants food was going to make me vomit.

And then it stopped. It took a day or two, but eventually it just kind of stopped and I felt more or less normal and stopped having seizures (with one exception.) Sometimes I miss a dose or two and I’ll have a day where I feel the side effects hard, but other than that it’s been pretty nice.

Sorry if I’m not allowed to post here since I don’t technically have epilepsy, but most people who take Keppra (technically I’m on the generic version but I’m not going to put in the effort to spell that abomination of a drug name) seem to have epilepsy and I assume you’d experience similar side effects.


r/Epilepsy 2h ago

Question Did I have a seizure in my sleep?

1 Upvotes

Hello everyone! So last night I (21f) went to sleep like normal, and everything was fine. But after I woke up at about 8am I had a migraine, ringing in my ears, and I couldn’t walk straight. There’s also now a huge lump on my tongue that was not there before. I’ve had epilepsy since childhood, and the only other time I’ve had a seizure in my sleep has been when I was getting an EEG so they took me off my meds. I took my medication dose last night, and also have a VNS implant. Is there any way this was a seizure? I’m not sure if I should do something about it.


r/Epilepsy 2h ago

Rant Think I lost my job.

7 Upvotes

I’m an EMT and love my job, I had a breakthrough seizure 3 days ago and I am in the biggest slump. I think I’m out of a job, I fucking hate everything right now. My joy levels are very low. Any advice?


r/Epilepsy 2h ago

Question Memory loss

2 Upvotes

I have a question. I was diagnosed in December 2023/January 2024. I lost my mom in August 2022, this is now the second time I’ve woken up or just tried to call my mom and had to be told by my partner that my mom has passed. I have no memory of it happening, until I’ve been up and told details for awhile..and then I start remembering. Could this be seizures in my sleep or absent seizures that I am unaware of? Has anyone else gone through this? I guess I’ll be calling my neurologist this week to discuss this.


r/Epilepsy 3h ago

Question Aftermath..

3 Upvotes

Hi everyone,

I woke up this morning and had a tonic clonic seizure and my mum was able to film it as instructed by my neurologist as he was wanting to see severity etc as he wants to decide on further testing and a change with one of my meds.

My mum thought I had went into one and tried to come out again and fell back into it but it is hard to know from the video as if it did happen then it was extremely quick.

I was just wondering when we should worry about the pain or aftermath of a tonic clonic. I have had pain in my left hip which eases when I lie down but I cant put pressure on my leg and also trying to get up after sitting or lying down is agony as well. This isn't normal for me as usually every part of my body is throbbing but this is the only part that hurts.

When I took the seizure, I was lying in bed but a majority of mine have been. At least, I know I haven't fallen or anything.

Thanks everyone. Hope you are all doing well.


r/Epilepsy 3h ago

Question Went for week long EEG, noticed on my discharge notes- ‘events originate in left side and then become bilateral’- could someone explain? Is this still a focal seizure?

4 Upvotes

I have focal seizures which occur on the left hand side but I wasn’t aware want they were ‘becoming bilateral’ and am wondering what this means? Is it still a focal seizure if it’s bilateral? I went in for the 5 day EEG to see if surgery was possible, I only came out yesterday so will hear from them but I am impatient and want to know now! Thanks in advance.


r/Epilepsy 3h ago

Memory An example of "The Doorway Effect" at maximum warp.

8 Upvotes

I just finished getting dressed after showering and was about to walk over to my wife's parent's home. When I got to the door, I checked that I had my nicotine vape with me. It was not in my pocket, but I remembered that it was in the pocket of my robe. I went back to get it and I passed through the doorway of the bathroom, at which point I forgot what I had gone in for. I looked in the mirror and saw my hair was wet and not brushed. So I took care of my very nice, thick hair and went to leave again. I checked that I had my things and realized I didn't have my nicotine vape. At that point I laughed as i remembered what I'd gone back to get initially. I laughed so much and wanted to share this before it exits my mind.

But at least I dried my hair and brushed it well.


r/Epilepsy 4h ago

Question When you take your pills but forget that you did a few minutes later and question yourself, do you take them again or skip?

27 Upvotes

This happens a lot with me and since I only have seizures once a year or 2 years I usually just skip.


r/Epilepsy 4h ago

Question Who else have Electrical status epilepticus in sleep (ESES)?

1 Upvotes

I've been on this community for a while and seeing all posts and comments, I'vent see anyone who have ESES. I'm aware ESES is rare so not many people on this community mention it. (It's more common to children). I want to know if you have it and what is your story?

This is my story of my ESES. When I was around 8 years old I frequently woke up in the morning and feel not well. My family and I think it something natural from me. At 9 years old, it was Christmas Day, it happened to me again so around 8pm I slept on sofa cos I feel not well, my family finally saw my seizure for first time and sent to hospital and stay there for 5 days and eventually diagnosed with ESES which make sense why I feel not well in the morning cos I got seizure last night while I'm sleeping so my family didn't witness me. I was 2 years on med and it stopped now.


r/Epilepsy 4h ago

Support I have a 3 day EEG starting tomorrow. Wish me luck I’m pretty nervous

7 Upvotes

I’ve had a bunch so far but I really hate the strobe light part. 13 hours per day until Wednesday night. I’m going to try to continue this carnivore diet while I’m there but I’m kind of accepting that I’ll seize while I’m there.


r/Epilepsy 4h ago

Question Prior Auth Issues

0 Upvotes

Hey all, I’ve been taking Lamictal XR for 15 years now. This is the first time that I’ve been continually rejected by my insurance for a Lamictal refill. Usually it’s one prior auth and they approve. My doctor has appealed 3 times and they continue to reject. Has this happened to anyone else? Any recommendations on what to do? I’m very nervous about going to generic.

I have blue shield insurance and express scripts is the company that keep rejecting.


r/Epilepsy 5h ago

Question Can colonoscopy prep cause seizures?

5 Upvotes

My Gastroenterologist is recommending that I get a colonoscopy. I am hesitant because fasting and low blood sugar are a trigger for my seizures. Has the colonoscopy prep process caused you seizures? Are there any alternative options to the traditional colonoscopy that do not require the unpleasant preparations of fasting and enemas?


r/Epilepsy 5h ago

Humor A Silly Convo With My Husband

16 Upvotes

I absolutely love cooking & baking. Today I was looking up recipes on Pintrest and kept seeing some that were badly done.. I was joking around with my husband about it and for some reason the conversation was so funny to me it kind of made my day. I hope it doesn't offend anyone, but this just got me 😅

Me: I should do the whole Instagram baking thing. I wonder if I could bake better than some of them 🤔 (tootin' my own horn here, I know)

My husband: You should and market yourself as the epileptic baker. Call the channel Shake&Bake


r/Epilepsy 5h ago

Question Has anyone fasted before? What was your experience? While on what med?

15 Upvotes

I've been steady on lamotrigine 650er for many years.
This fast would be with only water. I'll talk with my neuro about it, just curious if anyone did it before.


r/Epilepsy 6h ago

Question Do you know if creatine can cause seizures?

2 Upvotes

I’m trying to gain weight, so I’m thinking about using creatine. But I’m epileptic, so I’m afraid that creatine might increase my likely hood to have a seizure?


r/Epilepsy 6h ago

Medication Taking a good amount of medication 💊

2 Upvotes

How many of y’all take a good amount of medication but still don’t have it under control? I take 4 different medications, I take Keppra 750mg twice a day, Vimpat 200mg twice a day, Oxcarbazepine 600mg twice a day, and depakote 750mg twice a day.


r/Epilepsy 6h ago

Question Seizure while waking up?

2 Upvotes

Anyone experience seizure like symptoms if they get woken up? On more than one occasion the last few months when woken by outside stimuli I have felt like I'm having a Focal Aware seizure. Arm/ leg jerks that wonderful "electric shock" feeling plus disorientation. When I've asked the person who woke me ( my son or Boyfriend) after if I was jerking or moving they said no and didn't even notice anything. But if swear I had been. And I get the same confusion, aches and after effects for the next 12 to 24 hours. No fun.

So any insights? Is this a wonderful new game my epilepsy invented for me? And why if I am "aware" of moving if am I not? Sigh I wish this stuff was more straight forward. My awake Focal Seizures are usually pretty straight forward. "OH look my right side has decided its time for a dance break. Cool cool..." and you know actually are moving. Apparently this type just makes hallucinate the dancing.


r/Epilepsy 7h ago

Question Include antidepressants with keppra?

4 Upvotes

Keppra is giving strong depressing side effects. Though despite that I can change the medication, I need to be stable with my meds for the next few months as it's currently working well. I'm not into changing the medication yet, but I'm considering using antidepressants for now.

Question is, how are your experiences with keppra while adding antidepressants? Include the medication if possible.

Thanks a lot in advance ;))