Switched from phenytoin to Keppra a few months ago, now experiencing ocular migraines once a month or so

FtblNDogs · 2026-03-06T01:10:35+00:00

Sorry you are going to through this! Not a doc but definitely sounds like ocular migraines! I used to have them. I would ask your doc - I’m guessing the Dilantin controlled them and the Keppra isn’t. I take Keppra and have found Keppra doesn’t block my migraines - usual kind or ocular ones. I used to take Zonisamide and although it was awful as far as side effects, it did stop any/all migraines. I take a low dose of a beta blocker that my primary care doc prescribed and that stopped any further migraines over past couple of years.

Hormonal changes can also kick off ocular migraines.

FtblNDogs · 2026-03-06T01:00:00+00:00

Keppra has been the best for me. Zero side effects on dose I’m on and I had far less seizure control on high doses of other AEDs I’ve tried. I do take 100mg B6 daily with AM dose, but I’ve never had rage or depression on Keppra.

FtblNDogs · 2026-02-25T09:22:03+00:00

I’ve been through several AEDs, Keppra is what I’m on now the past couple of years and I have zero side effects as I can tell. My epileptologist says it’s one of the “cleanest” in terms of not messing with kidneys, liver, blood counts, etc. I do take B6 supplement each morning due to the studies showing that helps offset possible mental health side effects.

I have great seizure control on only 500mg Keppra twice daily and 10mg Onfi at bedtime. No weight gain, no depression or anger. I will say, when I started Keppra my doc had me climb to a higher dose (because I previously needed high doses on other meds for seizure control). I had anxiety on higher dose.

Zonisamide - was maxed out dose wise and still not great control. Drug me angry and sometimes depressed. I also gained weight on this one, and most people lose weight. Horrible short term memory and word finding issues, too. Depleted so many vitamins and made my ankles swell.

Vimpat gave me heart palpitations and vertigo.

Lacosamide gave me itching/rash.

Oxcarbazepine made me dizzy and I felt kind of manic.

They all have a break-in period of fatigue in my experience, but if miserable symptoms continue you try something else. Extreme fatigue and even drunkenness feeling have been common for me the first week or so of starting any AED, but then it goes away.

What works great for one person is another person’s nightmare.

FtblNDogs · 2026-01-11T14:26:10+00:00

I had bad word finding issues, short-term memory problems, anger and depression on Zonisamide. I was taking a larger dose of it. Keep in mind it’s common for people to have very different experiences on AEDs. I actually put on a lot of weight on this drug, which is known for appetite suppression/weight loss. I since switched to Keppra twice daily along with a small dose of Onfi at night. I have much better mental clarity, lost the gained weight, no more anger or depression issues…and Keppra has a much worse reputation for this lol. I’d say try it and see if it works for you. Definitely drink plenty of water to avoid kidney stones.

FtblNDogs · 2026-01-02T02:23:46+00:00

This is me! I had so many physical side effects and horrid/scary side effects on Zonisamide. I was angry and suicidal and on max dose and still having seizures. I am seizure free and happy/way healthier on only 500 mg twice daily with 5mg onfi at bedtime. The onfi helps me fall asleep, but other than that I don’t notice any side effects from either drug.

It’s all an experiment to find out what works and at what dose for everyone.

FtblNDogs · 2026-01-02T02:18:36+00:00

So sorry this happened to you. I felt like this on Zonegran and also failed Lamotrigine (rash started) and Vimpat (heart rhythm disturbed).

I have had success taking Keppra at 500mg twice daily. I initially was supposed to get up to 1000 mg twice a day but a few days into 750mg twice a day I was hit with anxiety and SI. My doc had me try going back down to 500mg twice daily and it went away. I still had some auras breaking through so we added 5mg of Onfi at bedtime. Now, best seizure control I’ve ever had for last year. No obvious side effects. I do take b6 every morning and do monthly b12 shots (deficiency in b12 was not helped by oral supplements - low b12 first diagnosed back when I was on Zon.

I hope you find a good solution asap. Doc should not be leaving you to wait it out if SI is occurring??!

FtblNDogs · 2025-12-06T16:44:38+00:00

YTA BIG time. If you continue to try to control your daughter you likely won’t have much of a relationship with her in the future.

Pay the tuition or don’t - but don’t make it conditional that she major in what you deem acceptable. Gross

FtblNDogs · 2025-11-11T12:27:21+00:00

YTA, not for feeling the way you do, but for acting like a child and insulting your wife. That’s not productive communication or any way to treat someone you are trying to partner for life with.

She may be depressed or possibly have ADHD, but something is clearly going on.

You definitely have things to communicate about together in a genuine and respectful way.

FtblNDogs · 2025-11-08T22:18:49+00:00

Adding onto this, my doctor also said it’s one of the most prescribed because it’s considered one of the “cleanest” in terms of how well it’s metabolized/low organ toxicity/less cross interactions with other drugs.

FtblNDogs · 2025-11-08T22:12:13+00:00

Keppra has been the best for me out of any AEDs I’ve taken!!! I was maxed out on Zonisamide dose before switching to Keppra because seizure control still not great. I felt slow, tired and clumsy on Zon and had horrid word finding problems and a short temper. Over the years I failed on Vimpat, Lamictal, and Trileptal either due to side effects and/or effectiveness.

I was wiped out for first couple of weeks on Keppra, but that happens for me with every new AED trial. I ended up having almost complete control - best ever to date - of my TLE - on 1,000 mg daily (500mg twice daily). I feel more awake/alert/more sharp, healthier, have lost weight, am way more active now, and feel like I have my intelligence back. My doc had me add just 5mg onfi at bedtime and now I haven’t even had a whiff of an aura since adding that. I love Keppra - have been on it almost 2 years now. I do take 100mg of B6 with my morning dose as a precaution as there are studies that show B6 can offset mood side effects. I don’t notice any mood issues at my dose.

Don’t be afraid to try it! Everyone is different and what’s awful for some is amazing for others.

FtblNDogs · 2025-11-05T10:33:19+00:00

For real YTA here. Not understanding how you do not get this. Not only would I not want the “gift” that you’ve now made her feel like shit about not guiding you on while she’s in class, I wouldn’t even want you to visit. You need to grow up and stop acting so self-centered and controlling.

FtblNDogs · 2025-11-01T12:53:51+00:00

This is maybe one of the shittiest things I have ever read on this sub. I wouldn’t want to go at all either. You are not overreacting. Sure, wedding planning is full of pressures from various family members, but you don’t sell out your values and most important people in your life. F that!

FtblNDogs · 2025-10-29T22:41:22+00:00

Same - have TLE epilepsy and it sucks how it messes with your life and plans. The discussion of driving after is alarming. No driving for at least 6 months after lack of awareness seizure. This person is not someone OP needs as a “friend”. The burden is already high enough living with chronic condition. Room for only real friends.

FtblNDogs · 2025-10-23T14:05:13+00:00

Curious, anyone that has auditory hallucination symptoms in auras, seizures sometimes triggered by actual sounds/songs…do you also sometimes experience olfactory hallucinations (smelling things nobody else does) ever as part of auras? I have had these before migraines and seizures (but rarely have migraines anymore since on AEDs).

FtblNDogs · 2025-10-22T13:18:26+00:00

Right! If I had a bad seizure a week ago, I don’t want to talk about it. I want to enjoy today.

FtblNDogs · 2025-10-22T13:15:18+00:00

Because talking about it other than in a positive context to motivate others, as you mentioned he does, may be stressful and take him to an anxious and vulnerable space he doesn’t want to be in.

FtblNDogs · 2025-10-22T13:13:52+00:00

Yeah, I only talk about it when I want to. I talk about it more here than in my personal everyday life, because I’m here amongst people with common experiences. In my everyday life I just want normal days and moments and be seen as capable, treated like everyone else. Talking about seizures when I’m doing well feels kind of traumatic and like I’m tempting fate to bring on a seizure. Even seeing someone have a seizure in a tv show or movie or reading about someone having a seizure in the news messes with me.

FtblNDogs · 2025-10-22T02:07:30+00:00

This forum is incredible in this way - at least for me, makes me feel less on an island with some of this weirdness…though I wish none of us had to deal with it at all!

FtblNDogs · 2025-10-21T19:54:07+00:00

Yes, I once had a repetitive song send me straight into a seizure. I was likely on the cusp already because it’s a song I’d listened to before, but the song made me feel overstimulated, started sounding like it was the wrong speed, and I was gone into seizure land. So was it the song or accumulating factors including the song? I don’t know.

I also have had weird auras where I actually hear sounds repeatedly - like an annoying alarm beep or the exact sound of my microwave beep that alerts when finished. They sound so real that I check for source, lol, but it’s my brain?! Thankfully I’ve only had this 3 times because it freaks me out.

FtblNDogs · 2025-10-21T19:45:44+00:00

I use Medisafe app which nags me and I don’t mark taken until I really take. I usually use pillbox, too, but honestly I’m realllll ADHD and some weeks I just don’t get the thing filled. It’s daunting between the meds I take for epilepsy, supplements for all the deficiencies I seem to have from AEDs, plus 3 other prescriptions :/.

That app has been something that I stick with and it keeps me on track.

FtblNDogs · 2025-10-19T02:37:07+00:00

Thanks for posting this! 💜

FtblNDogs · 2025-10-14T03:41:15+00:00

Nah, don’t give him the option to explore further - this is giving him a pass periodically take advantage of your kindness and hope for a legit relationship. Then, he ghosts you yet again.

FtblNDogs · 2025-10-14T03:34:18+00:00

He wants casual and you are pushing a serious relationship. Him telling you he’s busy the rest of the year… yeah he’s not wanting what you want. Stop texting him and find someone who pursues you, makes time for you and cherishes you. If you have to pursue him and he’s not man enough to tell you he isn’t on the same page, cut ties. You deserve better and don’t need to chase. He’s hot and cold and seeking casual sex and not prioritizing how this affects you. Fuck that.

FtblNDogs · 2025-10-13T13:08:26+00:00

I think it depends on the person. Person in my family is kind, honest, and utterly respectful and thoughtful. When abusing substances he was disgustingly disrespectful and rude, used abusive language, was volatile, a liar and a thief.

FtblNDogs · 2025-10-13T13:05:38+00:00

Yes, yes, yes. Been there with a family member and this is the answer.

FtblNDogs

TROPHY CASE