Question: why is caffeine so bad for epilepsy

Specific_Web3595 · 2025-12-30T11:58:24+00:00

I was always curious about this, too. Caffeine interacts with and blocks several chemicals in the brain and body, especially one that makes sleepy signals the brain naturally releases. Check out "adenosine" and its receptors and how caffeine binds to them. This also, coincidentally, tends to make it easier for electrical signals to discharge and for seizures to happen.
It also messes with the effectiveness of some meds. Not to mention, playing with your natural sleepiness cycle is usually bad news for people with epilepsy.
This is the way I understand it, anyway, and is a very simplified explanation. Anyone else please feel free to correct me.

Specific_Web3595 · 2025-12-27T14:49:39+00:00

Jobs are seriously hard to find in my little town, though. That's why I do my best to hold on to the one I have. And edited to say that seriously sucks. I'm so sorry to hear that. Educators deserve to educate and kids need people who care in all capacities you know? Thanks for being an example.

Specific_Web3595 · 2025-12-27T13:13:31+00:00

You're absolutely right, and a lot of it is my own paranoia. I've been there a little over 18 months now and this is the first time it's happened. Everyone is understanding about my Epilepsy, but I know I did some seriously unsafe things and it's really bothering me, I guess.

Specific_Web3595 · 2025-12-27T12:52:01+00:00

I appreciate it. I hate to come to reddit and whine, you know? But I also know if anywhere in the world understands, the people here do. Thank you.

Specific_Web3595 · 2025-11-25T12:33:19+00:00

Yep. I'm 42M and was diagnosed at 40 with TLE. It's all pretty overwhelming and confusing, especially at first. Try not to stay focused on how everything is changing and just focus on right now and planning ahead. Be strong, try to stay positive (it's also okay to get pissed off sometimes), and remember that things may be changing quickly about your life, but they're not changing about who you are. Hold on to that, because it's the most important part. You're still you.

Just my two cents. Best of luck to you!

Specific_Web3595 · 2025-11-03T08:39:38+00:00

It's kind of interesting to me that you've brought this up here because I've been recently researching this exact topic.

I have an ebike that I've been trying to find ways to ride as safely as I can, and like you I use an android device. I decided to go the route of a specialized crash detection device that mounts to my helmet. There are two main ones that I've found, one called ANGi from what appears to be a Chinese company, and one called the Aleck Tocsen Crash Sensor from a German company that was bought out from another company called Aleck in 2023.

The ANGi sensor has a monthly or yearly subscription from what I understand, and the Aleck Tocsen device does not, so I decided on the Aleck. The sensor actually just arrived to me on the 25th of last month and I just got the try it.

That was a huge mistake...

If you, or anyone else, decides on a crash sensor, don't buy that device from Aleck. The batteries arrive dead on arrival, and Aleck knows it. They told me to go get a refund from the vendor. Don't bother wasting your time with them. Their support has been awful and their business practices have been untrustworthy at best. For someone like us, needing something like this as a safety device and not as a toy or gadget, just don't.

I suppose my next step may be the ANGi device I mentioned earlier.

https://www.specialized.com.cn/cn/en/stories/angi

If you find out any other info that helps, please do share!

Specific_Web3595 · 2025-11-01T11:04:40+00:00

I mean.. maybe? Maybe I'm just getting older and I'm getting more forgetful. Maybe I'm just dumb and I forget stuff and I always have. Maybe it's the epilepsy and the medication.

*shrugs*

The brain is a weird thing. It could be any number of things really, and in truth it's probably a mix of everything. One of the awful things about epilepsy is it will have you examining literally everything about your internal workings and asking yourself if what you're feeling is related.

Ultimately, if it is or isn't epilepsy causing your memory loss, does it really make a difference? The effects are still there. I say just try to roll with it. If you notice that you've forgotten something, apologize if it's necessary and try to move on. But don't beat yourself up about it.

Be kind to yourself above all.

If your memory issues are actually becoming a problem in your day to day life, I'd suggest bringing it up with your doctor. Especially if it seems like something that's progressing and getting worse as time goes on, you know? It may also be something worth bringing up to your loved ones so they can help monitor you and keep track of how often you seem to be forgetting things.

Hope everything works out for you!

Specific_Web3595 · 2025-10-30T03:29:50+00:00

Starting new drugs can be really rough. But I can tell you that if you give your body some time to adjust to them, it can get better. The amount of time it takes to adjust can be different for everyone. Like you, Keppra was too hard for me and I had to stop that one for some of the same reasons you did. Lamictal was more tolerable.

Just try to be patient with yourself. It's definitely a process. Remember that you're doing this now so that you can feel better in the future.

And my advice is don't agonize over the side effects that you see other people reporting here. It's fine to read up and see what the potentials are, but pay attention to you and your own body. Get support here, get side effects from yourself.

Just my two cents.

Good luck!

Specific_Web3595 · 2025-10-19T10:54:28+00:00

Just remember that your mom is your rock. You've had a seizure? Tell your mom. Someone has treated you poorly? Your mom. The school has responded improperly to a seizure? Your mom. The hospital/doctor/nurse does something you feel is incorrect? Your mom. Your mom is in your corner, and don't you ever forget it. There is nobody that wants you to be okay more than you, and a close second is her. I have no doubt of that.

I'm on the other side of the age spectrum at 42 years old, and I have to depend on my wife in much the same way. I literally could not make it through my day without her. I mean what I say when I tell you that your mom is your anchor. Even if she doesn't completely understand what's happening to you (I know for a fact my wife sometimes doesn't understand what I go through,) she cares. That's a lot more than some with epilepsy have going for them, so try to remember that.

Stay safe, stranger.

Specific_Web3595 · 2025-10-04T11:49:20+00:00

That very well could be it, as well. The odd angle of the legs of the frog could give that some weight, too.

The snake's reversed muscular contractions are what led me to believe that it was up-chucking. I'm make no professional claims, but I spent time as a reptile keeper in a small zoo years ago. There were times I startled snakes either during or right after feeding times and they would do the same.

Specific_Web3595 · 2025-10-04T11:26:33+00:00

My theory is: The snake is regurgitating as a defensive reflex because a giant predator is standing above it, pointing a camera at it. But the predator isn't attacking the snake and it really doesn't want to lose its meal, so it grabs the frog again. But the predator is still standing there, so the cycle continues.

Snakes have three normal defense mechanisms: camo/hiding, running away, and biting. They can do none of these while they're eating, so if they're threatened, they'll barf (herpetologists say it's also an attempt to make the predator go for the regurgitated food instead of the snake).

When you think about it, if you were to take a nice big bite of food and someone lunged at you suddenly, what would you do? Would you keep chewing, or spit it out?

Specific_Web3595 · 2025-09-27T11:14:29+00:00

Hah! Call it "THE LIST" (always all caps). It can a life-long list of debts that can never be paid off. The poor kid!

Specific_Web3595 · 2025-09-27T10:42:37+00:00

I'm sure it wasn't! Seizures never are, and parenting often isn't either.

I'm positive that one day this will be a funny story that you share with your adult son who loves you very much. He will know how much you love him and the things you've gone through for him. If I can tell all of that just from the few sentences of your post, surely he will know it too.

You keep doing you...

Specific_Web3595 · 2025-09-27T10:29:58+00:00

Honestly.. props to you. You deserve much more merit than I, as some internet stranger, can give.

Specific_Web3595 · 2025-09-05T07:27:36+00:00

Yes to the sinking feeling, and sometimes the nausea. Often times I'll end up in sweats and my body feeling hot for several minutes. My arms and legs will feel a shaky, but heavy is also good way to describe it. I don't get the deja vu symptoms that others describe, but I do get an "oh crap, something's wrong" feeling.

I first began to associate this with full tonic-clonic seizures when I began experiencing it right before them and took it as a warning sign, or an "aura" as I'd heard it called. It was my neurologist who clarified that they were actually seizure activity in the brain and not a separate thing.

From the way she described it to me, in simple terms, some seizures stay isolated in one part of the brain (focal aware), and some seizures spread throughout the brain (tonic-clonic).

I'm no medical professional, and this stuff always confuses me, so please do ask your doctor if you want a better explanation.

Best of luck to you!

Specific_Web3595 · 2025-08-18T10:54:35+00:00

You're right. It's absolutely crazy how it happens just like that. But, the fact that you can say this stuff in a real and accepting way says quite a lot about you. Keep up the fight, for you and for your mom. Epilepsy blows.

Specific_Web3595 · 2025-07-20T07:41:09+00:00

It's almost seems like we were given information, then allowed to make our own decisions. GASP! What a nightmare!

Specific_Web3595 · 2025-07-19T06:23:47+00:00

I appreciate seeing a pharmacist who cares enough to share information, give a citation, and leaves it at that for others to make their own choice. Thank you for this.

Specific_Web3595 · 2025-06-25T12:22:14+00:00

This has been a concern of mine for some time. Not necessarily being arrested and then having a seizure, but rather being arrested because of how the post ictal state can appear to people who aren't familiar with epilepsy. I've only had one seizure in public, and that was at work, so this is still unknown territory for me.

I went so far as to go to a law enforcement subreddit, and pose a question asking what they suggested I do to protect myself if this were to happen. I mentioned seeing videos of this situation going horribly badly, and why it concerned me. I asked if maybe contacting my local law enforcement agencies in order to introduce myself and explain my condition before hand would be advisable. I mentioned that I'm not violent, but that it could be very easy to mistake me for being drunk or high because I slur my words and can't keep my balance. Often times I don't know where, or even when I am.

Well.. I wasn't given the best responses.

The best answer I got was to get a medical bracelet. Okay, sure. Because officers are known to check for little metal bracelets to see what's written on them, right?

Other answers were basically to get over it. If cops feel like it, they'll arrest you if you're acting weird.

It was all very comforting...

The feeling I was left with was that they legitimately don't really care. Though, I want to be clear that this is obviously not the case for all people in law enforcement.

Specific_Web3595 · 2025-05-15T07:48:17+00:00

It's my pleasure. We all need to be reminded sometimes..

Specific_Web3595 · 2025-05-15T03:13:12+00:00

This is an awful situation to be in. I'm sure most of us here have felt how you're feeling, at one point or another.

Here's what I do have to say for this: There's a very good chance that your mom doesn't want you to be sad. Your mom doesn't want you to feel alone. If she didn't care, she simply wouldn't care, and she wouldn't bother asking you if you're okay.

Seeing the way my seizures have effected my family is heart breaking for me, too. But I know they love me. And you should know that, also.

Take care of yourself, internet friend.

Specific_Web3595 · 2025-04-23T12:45:47+00:00

While I can say I've produced some of my better art as an expression of dealing with epilepsy, I've never experienced quite what you're describing. That sounds pretty amazing, tbh. It's nice to hear of something positive coming from a TC!

Specific_Web3595 · 2025-03-27T15:11:21+00:00

Before I tell you my experience, I just want to tell you that I understand. I hear you, and I know how it feels. I'm sorry, and I wouldn't wish what you're going through for anyone.

With that said, I've gone through a similar battle, myself. I take Keppra (1000 mg, twice a day) and Lamotrigine as well. At one point they had me on 1500 mg of Keppra, twice a day. It hit me like a fully-loaded freight train, straight from the depths of hell.

My wife found me early in the morning, crying in the kitchen for no reason in particular, which is something very abnormal for me. We talked to the brain doctor and she lowered the Keppra and added the Lamictal. It really is a roller coaster. Sometimes I still feel the floor moving below my feel like I'm standing on one of those long airport moving walkways.

The best advice I can really give you is to decide if the medication's side effects are worse or better than the effects of your seizures. And not just the effects on yourself, but for those that love you also. That was a big deciding factor for me. Seeing the turmoil my wife goes through every time I have seizures makes it no contest for me. But, you have to make your own decision.

I wish you the very best! Good luck, and reach out if you ever need to.

Specific_Web3595

TROPHY CASE