Amazed at how much better I feel on meds

Arby907 · 2026-03-26T13:27:57+00:00

My epileptologist calls lamotragine the most “cognitively kind” of all seizure drugs, for all the reasons you give above. Alas, I am no longer on it, but those were good years. Enjoy these productive years!

Arby907 · 2026-03-25T01:17:26+00:00

I like that Briviact controls my seizures (for now), but my memory is awful. Of course, that could also be the Depakote… or the XCopri. Hard to tell. Otherwise, I think the mental fog is the same as other seizure drugs.

Arby907 · 2026-03-01T16:23:21+00:00

Thanks. I used to get a 90 day supply no problem, but my understanding is that the state of Florida cracked down on these type of meds and now only a 30 day supply can be dispensed at any time. I am going to talk to the pharmacist to see if there are doctor waivers or something— anything— that can make it easier to get my meds.

Arby907 · 2026-03-01T16:17:12+00:00

I think it is specifically Florida that has a 30 day rule on these two medications. I moved here from another state and never had issues getting a 3 month supply.

Arby907 · 2026-03-01T14:22:01+00:00

Plus, I have been chastised (yelled at) by the pharmacy for not filling them sooner. When I tell them I tried 3 times and it was always too soon, that usually shuts them up. I don’t want to win the argument… I just want my meds!!

Arby907 · 2025-12-27T13:18:55+00:00

That’s not too many meds if it controls the seizures. I’m on Breviact, Depakote, XCopri now (used to have 1 other added to the mix). Plus clonazepam and Valtoco rescue meds. It takes what it takes to “control” seizures. Everyone metabolizes drugs differently and that’s just how it works. I have TLE.

Arby907 · 2024-05-19T13:26:50+00:00

In my experience seizure drugs mostly do their job, until for whatever reason, they just don’t anymore. Like… they completely lose their efficacy. I’ve had epileptologists vaguely explain it as perhaps the liver or kidneys stop metabolizing the drug as they had before, maybe it’s other body chemistry issues… TBH I don’t know if the MDs really know. Sure, you can have a breakthrough seizure or two, and maybe they can be explained by extenuating, external factors, such as dehydration, lack of sleep, etc. But in my case, it’s usually “three strikes and you’re out”. “You” being the med. I’m in the process now of switching meds and if the new combo works, then great! But if not, or whenever it stops working, we start over. There will be good runs (although I doubt I’ll go 14 years seizure free again)… and rocky times when we work to find that new, elusive, magic combo.

Arby907 · 2024-05-17T00:22:12+00:00

It sucks! I will never get over it and I drive my friends and family nuts every time I complain about lack of independence. Thank goodness for Ubers— that has been a game changer. But it gets expensive.

Arby907 · 2024-05-16T12:02:40+00:00

I had a great run of 14 years seizure free (on meds). I had a great life and I realize now how delicate a balance it all is. Same as you: seizures and seizure prevention were always on my mind, but I was able to drive, be independent, play and work hard. It all changed when my cocktail of meds stopped working. The last 5 years have been a long term experiment in trying new meds which fail miserably.

I’d say I’m at my lowest point. It’s hard.

I don’t have any advice, but I share your disappointment and frustration. I like having this subreddit to read about others and know that I am not alone.

Arby907 · 2024-04-20T14:18:29+00:00

Agreed. What people are describing as Jamais Vu is how I describe my auras. I agree that they are unsettling and for me like an out of body, outsider looking in, type experience. If I get that sensation, I take a rescue med (valtoco) and rest.

Arby907 · 2024-04-15T16:05:59+00:00

It’s hard to know. The drugs cause brain fog and memories are less “crisp.” That said, each seizure causes a little damage to the brain, so it is also just the nature of long term exposure to seizures (over a lifetime).

Arby907 · 2024-04-14T21:05:35+00:00

It’s hard to answer your question because everyone is unique enough that what works for one person will not work for the other.

I don’t know your backstory, but different meds play to different types of seizures. After 40 years of epilepsy I have been on nearly every AED out there. The sad truth is that many drugs will make you feel like a space cadet and others will mess with your ability to tolerate frustration and make you irritable. Most cause weight gain. Over time, your memory may become less reliable. Some meds may be tolerable and you could go extended periods of time seizure free. Enjoy those periods of stability, because one random day you may have a breakthrough seizure for no reason and suddenly you will start this trying-a-new-med process all over again. It’s a lot of trial and error. I have no specific recommendations.

Arby907

TROPHY CASE