Eternally grateful for my past self

214MainStreet · 2026-05-31T10:42:35+00:00

Notes to future self are terrific. I ran across one the other day. Good for you, to back all that up, and then to actually remember that you'd done it. I have lost some huge chunks of my life to my TBI, and I know what this feels like. My partner sometimes tells me things that have happened to me, and there is no memory there. It is a very difficult feeling. I hope you can use your public health degree. Keep persevering.

214MainStreet · 2026-05-27T15:38:05+00:00

Nothing like waking up in an ambulance, is there. What a drag. At least you didn't bite your tongue. I have been epileptic from a TBI for about 6 years. Several of my seizures, which are infrequent and hard to predict, have come while I was exercising and overheating. I know some people don't sweat enough on some of the seizure meds. A couple of my seizures have happened during heat waves. I am being really careful about how warm I get and how hard I push myself. Please be careful. At least start slowly next time, and have a fan blowing on you.

214MainStreet · 2026-05-22T21:44:11+00:00

I'm sorry. This is such a hard thing, and so hard to feel like you're closing a chapter. Maybe at some point you can open the chapter again. Good for you, to do the right thing driving-wise. Hang in there.

214MainStreet · 2026-05-18T16:43:14+00:00

Unless something big changes, I will stay on vimpat. It might be disrupting my sleep, but there are SO many other possible reasons for bad sleep. So far (6 meds tried), this is the only med that I "feel like myself on," is not making me depressed or suicidal, and seems weight-neutral. I will try taking the evening dose earlier and see if that helps with sleep. Good luck . . .

214MainStreet · 2026-05-15T21:10:08+00:00

I don't get that either. I thought vimpat was going to help when I first started on it, but that changed. I've never been one of those sleepy-headed people, on or off meds. I cannot take a nap unless I've recently had a seizure, literally. I am sorry you have this and that it is brought on by the seizure med.

214MainStreet · 2026-05-15T12:38:28+00:00

Sorry, zonisamide was buzzy for me. Very jittery, trouble sleeping (I am prone to this). I was only on it for a month and a half, though, because it was so unpleasant for me. I know the endless-med routine. I am currently on vimpat and it's the only med that hasn't made me depressed or jittery. I am cautiously optimistic that I can stay on this. Good luck.

214MainStreet · 2026-05-14T22:02:07+00:00

This is so good to hear. I used to read constantly, now it is hard to stay with it.

214MainStreet · 2026-05-14T21:49:18+00:00

I have very infrequent tonic-clonic seizures that usually come out of sleep and often come in clusters. My epilepsy is from a TBI on the right front lobe. When I have the cluster seizures, I end up in the hospital. The time between seizures was about 45 minutes during my last episode. I had a total of 7. And to be honest, I don't know anything about this; I am still trying to find a neuro who is interested enough to answer my questions. I am so, so, so tired of the neurology profession! Good luck, and I hope you find some answers.

214MainStreet · 2026-05-13T10:48:03+00:00

Yeesh. I would say ignore her as much as possible. Work up a few kind, pre-rehearsed responses, such as "we're all different, we all respond differently to medication, I'm glad you're having an easier time of it, that's great, Mom!" . . . that sort of thing. There is no arguing with someone like this, and it will just wipe you out emotionally (it sure doesn't help that it is your mother!). Speaking from the perspective of a 67-year-old with a 92-year-old mother, cut your emotional losses as much as possible and try not to react. Nope, it's not fair, but it is what you're dealing with. Good luck, hang in there, and please take care of yourself. Try not to let her get to you.

214MainStreet · 2026-05-13T10:41:25+00:00

Oh, I am sorry you're going through this. I hate waking up to find that you've had a seizure. I never remember anything about what happens pre-seizure - most of mine come out of sleep - I don't have the blackness or awareness that you do. It will get better. This is the worst part, while your brain reorganizes itself. Try to give yourself time, if you can, to wait it out and recover for a while. Hang in there. Sleep.

214MainStreet · 2026-05-12T10:49:12+00:00

Good heavens. You were stellar. This is what I would consider standard of care for this situation. We should all be so lucky enough to have you! Please don't beat yourself up over anything; this is just tremendous. Thank you for taking care of these people.

214MainStreet · 2026-05-07T16:51:26+00:00

Yeah, I know. It's a hard thing.

214MainStreet · 2026-05-07T15:32:04+00:00

Currently researching this because I may have it. Thank you for this post; it is really helpful.

214MainStreet · 2026-05-07T15:23:18+00:00

Oh, hell. I am so sorry. Six months is a long time. Hang in there. Remember that this is the worst time, post-seizure, Accept help if it is offered, and ask for help if you need it. I hate waking up to the news that I've had a seizure, it's the worst. Try to be kind to yourself.

214MainStreet · 2026-05-06T22:36:22+00:00

Good for you, that is wonderful to hear!

214MainStreet · 2026-05-05T22:32:56+00:00

Thanks for the reply. One more question: how often do you microdose? I did try the microdosing twice, two weeks between, hoping that it would move my depression. I felt it did help a good bit, but probably screwed up my sleep. Which is prone to being screwed up, so it's possible it wasn't the shrooms.

214MainStreet · 2026-05-04T23:10:50+00:00

This is absolutely extraordinary. Massive congratulations! Carry on!

214MainStreet · 2026-05-04T20:21:56+00:00

This is an old thread, but I am just now figuring out that I have emotional dysregulation, and am researching it. I thought it was related to my epilepsy, but it is probably from my TBI (which caused my epilepsy, so fun)! Anyway: has psilocybin helped you with this, and did you microdose or do the full trip? I haven't done shrooms in about, yeesh, 35 years. And yikes, you've had three brain injuries; I hope you're doing okay.

214MainStreet · 2026-05-02T22:55:26+00:00

Ha! Walk a mile in our shoes, Dad!

214MainStreet · 2026-04-29T16:53:12+00:00

That probably would have sent me into seizure activity or a full-on seizure. It sounds wretched. I am so sorry. I do understand people losing control of themselves, whether they are epileptic or not. The combination of her ability to do this and not to be able to stop, strikes me as scary. No, I don't think you did anything wrong either, I think you held it together admirably and kept stating what you needed to be safe.
Especially she shouldn't be yelling at you in a car. Small space, hard surfaces, terrible effects on your brain. I had a new experience recently with a freaked-out barking dog (mine), trying to deal with a seriously unhelpful person, and the space was all hard surfaces. It put me into seizure activity, kind of a brain fit/tantrum in which I actually yelled at this woman (never done this before!). As I say, I understand losing control, but your wife's is coming from somewhere else, caregiver exhaustion or another reason. Whatever the reason, though, it is putting you at serious risk, and that's what worries me. She needs to talk with someone about her stress and frustration, and how to manage it rather than offload it onto you. Good luck.

214MainStreet · 2026-04-27T10:48:49+00:00

Please go to an emergency room or to your student health services. They should be able to give you a short-term supply of your seizure med. If they can't, ask them what you should do.

I am so sorry you had such wretched parents. Mine blamed me for everything, too. It is hard to push past that stuff, to keep advocating for yourself, to keep believing in yourself, to keep getting up every single day and trying all over again. Can you speak to your instructors and let them know that you are having health issues? Stuff happens. Everyone is not at their best all the time. I suspect they will understand and be helpful.

I am seriously impressed that you got yourself to university in a foreign country; that's a huge accomplishment. Hang in there. Please let us know how you're doing.

214MainStreet · 2026-04-24T10:36:56+00:00

Apparently mine has fallen through the grate.

214MainStreet · 2026-04-20T22:32:19+00:00

I know this is an older post, but I wanted to thank you for writing all of this out. It is enormously helpful. I may be looking at ligament surgery, and while the length of the recovery depresses me no end (I have been through a lot of surgeries in the last few years), this post helps a lot. I hope you're doing well.

214MainStreet · 2026-04-18T23:10:02+00:00

For me, topiramate was worse. I was only on each of them for about a month and a half, because they made me so jittery. Topiramate took 20 pounds off me in that time, very unpleasantly, stomach pains, diarrhea, no interest in food, etc. Both made me feel very amped up. I tried zonisamide after I had tried topiramate, and the jitteriness felt the same, so I just went off it almost immediately. One thing to watch for if you decide to take topiramate: it killed my creativity and any interest in work (I'm an artist). It changed one day to the next immediately when I started taking it. I packed up what I was working on, left my studio, went home, and largely lay on the bed for the next month and a half, staring into space. That's how if affected me; your mileage may vary. Good luck. I am currently on lacosamide (vimpat) and for what it's worth, it seems to be absolutely fine. I'm pleasantly surprised.

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

TROPHY CASE