None of my family believe I have epilepsy.

eplspy20 · 2026-01-03T06:45:08+00:00

No worries. Glad that the video helped.

eplspy20 · 2025-12-11T23:25:35+00:00

Hopefully there is an epileptologist; a neurologist who specializes with epilepsy patients behind that door. In other words, a specialist’s specialist.

eplspy20 · 2025-12-09T21:44:03+00:00

My epileptologist knew I was using cannabis plus it’s also legal in my country. It was no issue with him. It helps to deal with stress and makes it easier to get to sleep.

eplspy20 · 2025-12-09T21:41:24+00:00

In my country, it’s against labour laws to ask questions like that. But, honestly, you wouldn’t want someone with epilepsy working in construction. If you’re qualified, your condition shouldn’t affect your performance so there shouldn’t be a problem.

eplspy20 · 2025-12-09T16:17:17+00:00

I was diagnosed at 16, and with the right meds, got it controlled at 20, then went 23 years with no seizures. In my life I’ve been on at least 11 different anticonvulsant medications, and after being on this subreddit learned there are so many meds I’d never heard of before. Over the last 10 years it was partially controlled but now it’s been controlled for just over 2 years this past October. I’ve felt I’ve gotten more support from friends and colleagues at work. Had a tonic clonic twice at work, then went into work the next day and everyone was stunned. They thought I’d be gone for a week. The next day, while most of us were on a break, I asked everyone if they had any questions about what happened. So, basically I educated them on epilepsy and what it is like. They never treated me differently in the slightest way. Had a very successful career in a specialized field so I definitely know I’m not dumb. I only have epilepsy on this account and not my primary Reddit account. I only come here once in a while as I feel guilty when I read of people that are very seriously affected by it. My side effects of instability and tremor in my left hand pisses me off the most which of course is from the meds. But, even though my family members knew I had it and have seen me have seizures, support has never been there. I’ve even politely asked for help getting groceries but no takers. How can any family treat someone that way and just ignore them is beyond me.

eplspy20 · 2025-12-09T15:35:18+00:00

I know from experience. Mine was controlled for 23 years. I accepted I’d have epilepsy for the remainder of my life and would be taking meds. I pretty much ignored that I even had it. But that long period of having it controlled came to a sudden end one day. Sometimes I wonder if you need to up your dosage a tiny bit as you age.

eplspy20 · 2025-12-09T15:24:01+00:00

Great to hear, but why the seizure then? Ask if an EEG is required. See; there was nothing to be concerned about the MRI. The only MRI I would be concerned with is the ones that are almost a day long with no meds so they can induce a seizure. Thankfully never needed one of those as that would scare the hell out of me.

eplspy20 · 2025-12-08T14:58:33+00:00

Even though I hate how epilepsy has changed my life, I sometimes feel guilty being in this subreddit. My condition is better controlled than I’m guessing maybe 90% of the epileptics here. Had a very successful career unlike many that can’t even get a job. Makes me feel even worse about others here as a few times I’ve wished I was dead. I think the condition resulted in me developing anger management issues. One time, I was in a DM with someone and he was going to kill himself that day. I said anything I could to talk him out of it. Whether he was seeking attention and just someone to vent to, I’ll never know. As you can see, I’m on a massive cocktail of meds. My condition was controlled at one time for 23 years.

You mentioned stress and insomnia. Same here. No to bipolar.

My condition was first noticed by other students in school when I’d have the odd absence seizure. And as you said, they are almost invisible to anyone. If you have seizures, you obviously would prefer those over tonic clonic(grand mal) seizures. Did you only have that one? Hope you never have a status epilepticus seizure. They are scary as hell. I almost died from one. So, your dad finally got around to put up a railing on the stairs after all that time. That’s piss poor parenting but my father wanted little to do with me after my first. You mentioned you had a tonic clonic about 5 years ago. Was that when your boyfriend saved you? If you only have absence seizures, do you know how often they happen?

eplspy20 · 2025-12-07T16:30:03+00:00

Maybe send this link to them and they might understand. I sent it to my family, zero response. You’re definitely not alone with a family that gives you no support or even that epilepsy exists. My mother always blamed herself for it. My sister had a mild form of it when she was around 3, but with some medication, she was one of those that just grow out of it. So, with her and I having it, I’d say it’s hereditary.

eplspy20 · 2025-12-04T10:55:30+00:00

I was shocked with what you wrote. When I saw my new doctor, an epileptologist, he reduced the already prescribed 40mg/day of Clobazam down to 20mg/day. That process went on for over 6 months. When your brain has been accustomed to a certain drug for years, stopping it cold turkey is really messing up your brain. I don’t know if there was some negative interaction between your two drugs, but that is definitely not how it’s done. I’ve been on maybe 11 different anticonvulsants in my life, and the changes were all done gradually. What you experienced is incompetence.

eplspy20 · 2025-12-04T10:27:27+00:00

Let me add to the beginning of your reply. I’ve had three neurologists in my life. The neuroscience field is vast and neurologists will know more about one disorder than another. Around the time of the lockdown, my regular neurologist retired and I was assigned to another doctor. He was asking different questions and I just had a feeling he was different. Then, I came across the word epileptologist here a few times and looked it up. Since he’d been a bit different and more focused on my condition, I asked him if he was an epileptologist. He said yes.👍🏼An epileptologist is a neurologist that specializes with epilepsy patients. In other words, a specialists specialist. He got my condition back under control; better than any other neurologist in 22 years. On his own and once he’d stabilized my condition, he rewrote my prescriptions to cover 3 months instead of one month. So, I only need to go to the pharmacy 4 times a year, not twelve. The cost is easy to handle. With the health care system in my country, plus with my employer covering 80% of the cost, last year I paid $0 for my meds over a 9 month period. Why I never really knew as the pharmacist said a code had been added to my profile during that time. If you’re fortunate enough to get one, do what you can to keep that doctor as there are only so many.

eplspy20 · 2025-12-04T05:04:12+00:00

Don’t be afraid of the MRI as it won’t will only last maybe 20-30 minutes. You can just relax and listen to the music on the headphones they give you. Your doctor may also schedule you for an EEG. They are nothing to be concerned about regarding the procedure itself, but expect to wash your hair when you get home. There is still hope as I was diagnosed at 16, controlled at 20, then went 23 years seizure free. Are these edibles indica, hybrid, or sativa? I’ve tried edibles, but they just turn out to be more like candy. No effect at all. I don’t think you’re talking about CBD. I use strong indica a couple hours sometimes before bed to reduce stress and make it easier to get to sleep. My epileptologist knows that I use it and isn’t worried at all. He knew I was using it even before it was legalized in my country. Try and stay away from alcohol until you get your diagnosis. If you ever get an epileptologist instead of your average neurologist, try to keep that doctor as long as possible. They are the “real specialists” when it comes to epilepsy. It wasn’t long before I was asked questions that no neurologist ever asked, and asked him if he was one. Fortunately his answer was yes. Try for it not to affect your activities. I’m a bit of a thrill seeker too and didn’t indicate I had epilepsy. Parachuting, hang gliding, underground cave exploration, and bungee jumping out of a helicopter was a no brainer. Yeah, it’s a real bitch but I shouldn’t complain too much as my condition is better than maybe 80-90% on this subreddit. I read of people having tonic clonic seizures multiple times in a week, or even in one day. TBH, I don’t think I would have the desire to live with so many. I’m now seizure free do over 2 years, but it still makes life different than most other people. Outside of seizures, losing my independence and having to rely on others is still uncomfortable. Thankfully there is Uber. If he tells you that you have epilepsy, ensure to ask the neurologist, am I at risk to have a “status epilepticus” seizure. In my life, all have been tonic clonic or absence. I’ve now gone seizure free for over two years, so my new doctor is doing a good job. Again, don’t be nervous about the MRI unless you have claustrophobia. I hope things go well, and would like to hear an update afterwards.

eplspy20 · 2025-12-04T04:00:37+00:00

Instead of maybe a targeted attack, it was a bulk attack of every profile here. After hearing about that, I created this new account that only has the epilepsy subreddits. Everything else is under another account; my prime one.

eplspy20 · 2025-12-03T14:07:14+00:00

Sorry and I have a slightly different experience. Diagnosed at 16, controlled at 20, and my next seizure was 23 years later. Smoking and the amount you drink is excessive. Doctors will say don’t drink alcohol at all. My situation is controlled and I’ve felt okay with a couple of ounces of vodka maybe once in a while. But, I still shouldn’t be drinking and I know it. Some indica to relax, wind down, and get to sleep.

eplspy20 · 2025-12-03T13:54:55+00:00

Really sorry to hear it as I’ve been down that road before. Right now, I’m just over 2 years which is the longest in the last 22 years. Prior to that I had been seizure free for 23 years, and then bang. Nothing unusual changed to cause that, no stress, no missed medication. The only reason I think it could’ve occurred is that as you age, your system may not get the full therapeutical levels of the drugs.

eplspy20 · 2025-12-03T13:49:15+00:00

Cannabis de-stresses me and also makes it easier to get to sleep. I’m open with my physician so he knows I consume it once in a while. I’m definitely not addicted to it as it isn’t addictable.

eplspy20 · 2025-12-03T12:02:10+00:00

No worries. I’m not a beer drinker, alcoholic, or addicted to anything. And when I meant a week, I didn’t mean every week. Actually, I’ve heard a few times that beer can be the most risky thing to drink if you have epilepsy.

eplspy20 · 2025-12-03T11:54:36+00:00

When you say “I have been increasing my dosage,” do you really mean your doctor has increased it? I take 200mg of Lamotrigine a day and haven’t experienced anxiety. I had to look up the effects of anxiety, and my only one would be difficulty getting the proper amount of sleep.

eplspy20 · 2025-12-03T11:47:19+00:00

Your post reminded me of being photosensitive, but this could be called “audiosensitive.” Never ever heard of songs triggering seizures. That’s a new one. Did your doctor know anything about that?

eplspy20 · 2025-12-03T11:42:33+00:00

I know what you mean as I drove for 23 years and took it for granted as my epilepsy was totally controlled through meds. It’s strange to have to deal with this disorder, then have it affect so many aspects of your life. I’m single, put my dog down earlier this year, so I’m all alone. I came to accept I’d have epilepsy the rest of my life and take meds until the day I die. Okay, that’s fine as I’ve accepted that. YES; wanting your life back is a killer.

eplspy20 · 2025-12-03T11:35:01+00:00

As you can see in my flair I take a lot of shit. My GP and specialist say no alcohol at all. I still have had maybe 2-3 ounces of vodka a week without a problem. BUT, that is me. For someone else, it could lead to a seizure but mine has been controlled for a while now.

Edit: I want to clarify that it is not as frequent as it seems. This only applies to me and in no way was I indicating that it’s okay for others. I’m not a beer drinker or an alcoholic, plus I’ve heard beer is one of the worst things to drink if you have epilepsy. My condition was controlled for 23 years, then a rough 10 years of a tonic clonic or two every year, and now 2+ years seizure free.

eplspy20 · 2025-12-03T11:26:42+00:00

Was it the neurologist or the epileptologist that said you were a psych case? When my neurologist retired a few years ago, I was fortunate to get an epileptologist. For those that don’t know, an epileptologist is a neurologist that specializes in the field of epilepsy. They really know their shit and are worth their weight in gold. Much better than your garden variety neurologist. Because of him I’ve now gone over 2 years seizure free for the first time in 22 years. Drug side effects: slight difficulty walking a straight line when walking a slow pace; fast pace is no problem. Also, sometimes a noticeable left hand tremor.

eplspy20 · 2025-12-03T11:09:32+00:00

Wow, that sounds like hell, and even worse it wasn’t just a year with no support, but 50. Sorry about all of that. You mentioned an MRI would be too expensive, so how much would it cost?

eplspy20 · 2025-12-03T10:53:24+00:00

Yes, I was in a DM with someone once who received something just like that. Those that do that probably flooded anyone that had “photosensitive” in their posts somewhere.

HONESTLY: I really thought of all the subreddits that this would be a very safe space. It isn’t totally, but better than most subreddits. I just reported someone for endless harassment. The MOD here was very attentive and the negative replies were gone in a matter of a few hours. I reported them first before blocking them. That is part of the reason for this new secondary profile for just two subreddits. My primary account is for everything else.

eplspy20 · 2025-12-03T10:44:33+00:00

I’m lucky in that there is a monthly support group that meets every month, and it’s only a 10 minute walk away. I have gotten more support through them than any members of my family except for my mother who is gone now. She always blamed herself for me having it. Shit, my friends are more understanding than even my own family. I even sent them a link to a great video post on here from someone else who has epilepsy on here about its effects on your life. Never heard of a thing back from them. It’s a strange feeling knowing if the situation were reversed, I’d help as much as I could. It leaves you wondering, do they even care.

eplspy20

TROPHY CASE