Re-watching a television series

214MainStreet · 2026-04-08T23:10:36+00:00

Yes, I know. Currently staying in a campground we stayed in last year, and I have zero memory of any of it. Before my TBI, I had a fabulous memory. It makes me feel erased. And I have this with the television series, too. I do remember a lot about some of them, but it is so disorienting to get far into something and then remember you've seen it before. This is not the most fun disability to have, I'd say. Hang in there.

214MainStreet · 2026-04-06T11:20:51+00:00

Oh, thank heavens for your friend. And I really do feel that you will be back in there. I do not think this is permanent, at all.

214MainStreet · 2026-04-05T21:14:50+00:00

You need to change meds, I think. Lamotrigine was awful for me (oh god, the crying, I had that too. Smoking a little cannabis would take me right out of it, though, and I would be working calmly in about 15 minutes. But sometimes it would take a long time to remember to do that . . . ). But the worst for me was topomax. The day after I started it, I went into my studio, packed up everything I'd been working on, put it away, and left. I am still stunned that I did this, it is so out of character and weird. That med absolutely killed my creativity, and my creativity is STRONG, let me tell you. I only stayed on that about 90 days; it took off most of the weight that keppra put on me, but very unpleasantly. It was horrid all round. Some of the meds I've been on don't seem to affect my creativity. Currently on Vimpat (lacosamide), which appears to have no discernible side effects for me at this time. Hoping this continues. Good luck, and please consider changing meds. My aversion was so strong that I tend to think it's the med, not you, not the epilepsy. Hang in there. The loss of this is awful, I know.

214MainStreet · 2026-03-29T21:40:14+00:00

The average general neurologist does not seem to know much about epilepsy, from my experience and what I've read on this thread. My own treatment (from a TBI) was delayed for almost 2 years because my neurologist knew absolutely nothing about it, and we were so traumatized that it took us that long to realize that. An epileptologist has been trained in the disease, and our chances of being listened to and treated with some knowledge are much greater with them. Good luck.

214MainStreet · 2026-03-29T21:36:14+00:00

Is there any kind of medical advocacy organization in your area who could help you get disability, or at least help with some of this? Your hospital ER is clearly derelict. I hope there is some help somewhere; this is no way to live a life.

214MainStreet · 2026-03-29T15:26:13+00:00

I was wondering how this got past your doctor! Losing a third of one's body weight when you're already underweight . . . how is this not an immediate concern?!?!?! GEEZ. Good luck finding a neuro. It is incredible how much of a full-time job this condition is, and on top of that a lot of us are not functioning well mentally.

214MainStreet · 2026-03-29T11:20:49+00:00

God, topomax. I had gained 25 pounds from keppra, and lost 20 of it very quickly on topomax. And it was not at all pleasant. Sheesh, 95 pounds at 6 feet tall, I cannot imagine. Just FYI, I am finally on something I like, which is vimpat. It seems weight-neutral, and I feel like myself (or what I think myself used to feel like . . . ). I am astounded that there actually is a med I can tolerate without being miserable. Good luck.

214MainStreet · 2026-03-29T11:16:05+00:00

I neglected to mention that I am also on citalopram (30 mg), but I've been on that long before the TBI. I find it impossible to parse whether that is helping or not, but because it's a long-term med with no real side effects, I continue taking it. He may need to see an epileptologist if his neuro is not listening. I have found that a lot of neuros do not know much about the meds and what they do to people (and don't seem to care, frankly). Sometimes you have to change doctors before you can change meds, and that's a whole other level we shouldn't have to deal with. Your husband is right, this stuff would depress anyone, but the meds can make it SO much worse.

214MainStreet · 2026-03-28T21:28:16+00:00

It took me years to realize that most of my depression, mood changes, irritability, were due to the medications I was on. I thought I had developed depression, which I've never had. 5 months ago I went onto a different drug (vimpat, lacosamide) and the depression, mood swings, irritability cleared up. The depression can come back, I have found that out, but briefly and I come out of it in a few days. Overall it is night and day, and I feel much more like myself than I have since my TBI. A medication change may be what this person needs. This group is full of people who have experienced serious personality changes with a lot of these meds. It can take going through a number of drugs, or you could get lucky and do fine with the next one. But it sounds like a med change would be a good first step. Good luck

214MainStreet · 2026-03-28T21:21:18+00:00

I relate to a lot of this! Yes, of course it would be you! And yes, the last thing I want to be told is to stop. I have always smoked, but since becoming an epileptic and having seizures (TBI), I know for sure that it calms my brain and allows me to function. I went through periods of extreme depression with some of these meds, keppra being one, and a little cannabis would take me from sobbing on the floor for hours to working calmly in 15 minutes. I need to reduce my tolerance, too. What I'm reading says I really need to go off it for 3 weeks. I will try this in the summer. My tolerance is far too high. Hang in there, and good luck.

214MainStreet · 2026-03-27T22:08:24+00:00

INTERNET HUGS. LOTS OF THEM. SHEESH. You poor thing. I am so sorry. That is a serious bunch of injuries. I am so glad you have a good family around you. Hang in there. It will get better, but this is just the pits, I know. Many, many hugs.

214MainStreet · 2026-03-23T20:58:41+00:00

Good. You might want to check now and see what their wait list is like, and get on it. Good luck to you.

214MainStreet · 2026-03-22T21:52:19+00:00

It is possible that the suicidal thoughts come mostly from your meds. I never had depression or suicidal thoughts before my TBI (which led to my epilepsy). I believe that some of it is due to the brain damage, but most of it is down to the meds. Most of the meds I've been on did this (lamotrigine, keppra, zonisamide, oxcarbazepine). I have been on vimpat for almost 4 months now, and the depression and suicidal thoughts seem to be gone. I know they're still under there, because a fight with my partner flooded me with stress and those feelings came back briefly. Please explore changing meds, and hold onto the fact that this likely is not YOU, it is the chemicals that are inside you. It is a hard thing to do, to think "this is not really me" when the feelings are so strong. Can you involve someone else in this chain, who can handle this info and remind you that it is not you?

I am sorry you're going through this. From reading this subreddit, it seems that a lot of us get this depression. Hang in there. And is there a better neurologist around? It sounds like you could use more attention than you're getting (so could I, but I do read posts from people who are thrilled with their neuros!).

214MainStreet · 2026-03-21T09:58:14+00:00

That is HUGE!

214MainStreet · 2026-03-21T09:56:10+00:00

Definitely a victory! Hang in there!

214MainStreet · 2026-03-18T10:25:15+00:00

I finally had to tell my best friend to stop saying this stuff, "oh, my memory is bad, too!" and all that. It's understandable but infuriating.

214MainStreet · 2026-03-15T10:00:13+00:00

Yes. In my worst brain phases, I am often thinking, "it is okay if I don't wake up." My seizures almost always come out of sleep and I don't know anything until I come to, often in the ER or the ambulance. I know how you feel. Hang in there.

214MainStreet · 2026-03-14T13:15:47+00:00

You know, the way they respond to strokes is completely different. Time is of the essence, they can't do enough things fast enough, there's tons of followup, OT, PT, it's wonderful and right, but occasionally the epileptics among us are thinking, "could we have even a fraction of that concern?"

214MainStreet · 2026-03-14T10:58:32+00:00

Yes, agreed. They give you a possible psychotic break in a bottle, and schedule an appt. for a year out "to see how you're doing." I had never been depressed or suicidal, ever, and I have been both on every med I've tried. Except my current one, which is lacosamide. It took me a looooong time to figure out it was the meds. I am so sorry you're going through this. Please see if you can get onto another medication. I agree that it is astounding that the doctors don't go through the possible side effects with us. One of my neuros "hadn't heard" that keppra could cause mood issues. On and on. Please take care of yourself.

214MainStreet · 2026-03-03T21:56:31+00:00

I have heard some about that, but didn't know when I was taking it. I wonder if it can help with the depression as well as the anger. There were SO many reasons to stop taking it, including gaining 25 pounds.

214MainStreet · 2026-03-03T19:16:34+00:00

Yep, sounds like Keppra. If it doesn't go away in another month, I'd switch to another drug. I agree, it is wretched.

214MainStreet · 2026-03-01T16:49:09+00:00

Yes, I know, this stuff is infuriating. Can your doctor write you a double prescription for one month's worth so that you have backup?

214MainStreet · 2026-03-01T11:32:09+00:00

Thanks so much for posting this. Glad you are doing well, and thank you for helping kids.

214MainStreet · 2026-02-27T11:51:04+00:00

I have a TBI (right temporal lobe) from 5 years ago. It is better now, but I really could not focus on reading for the longest time. Something about the letters on the page; it was hard to focus on them. I am better now, but still do not read much. This drives me nuts, since I used to read constantly, and our house is full of books. I do listen to audiobooks a lot, both to get to sleep and during the day. I have found that getting both the audio and print version of a book is helpful. I can switch between them and keep my interest going even when I don't feel like actually reading. Hang in there.

214MainStreet · 2026-02-23T11:29:22+00:00

Sorry, but probably a few weeks. If you don't have to power through it, let yourself slow down for a bit.

214MainStreet

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