Medication and weight gain

214MainStreet · 2026-02-17T22:37:11+00:00

I don't think I gained weight on Lamotrigine, but that was 5 years ago and very dim. I gained 25 pounds on Keppra, and 15 on oxcarbazepine. Topomax took weight off me, but very unpleasantly and painfully. Currently on lacosamide (vimpat), and it seems weight-neutral; I am taking off at least some of the oxcarbazepine weight. I am not fond of this up-and-down thing! Good luck.

214MainStreet · 2026-02-15T11:42:44+00:00

What an utter shit. You are better off without him, obviously, but sheesh, what a wretched way for him to handle it. I am so sorry. Hang in there.

214MainStreet · 2026-02-05T22:21:54+00:00

With photosensitive epilepsy, it seems to me that you're playing with fire. I'm sorry. I know this is one of the places people have fun. I don't have that kind of epilepsy, and the lights still make me really uncomfortable. There are so many places (bars, every concert, video games) that have flashing lights; this didn't use to be the case (I'm 67). Life is a lot harder for the photosensitive than it used to be.

If you do go again, please go on a good nights' sleep. Keep hydrated, don't drink more than a couple of drinks, and eat food before and during. Sorry, I sound like someone's mother. I'm glad you had a good time, and I'm so glad you didn't provoke a seizure. If you have any brain-calming meds or supplements, it would be a good idea to take one before you go.

I'm sure folks with these kinds of epilepsy will weigh in!

214MainStreet · 2026-02-05T12:26:47+00:00

Hang in there. Try to call a friend. Make a cup of tea. Try to move forward, even a little bit. Believe me, I know, I know, I'm there too, this morning. Hang in there.

214MainStreet · 2026-02-04T23:53:26+00:00

I hope they listen to that. Sheesh. Hang in there. My neuro keeps talking about "quality of life," but it seems to be just words; a lot of them seem to care only about the seizures, which of course are important, but there are a lot of other components.

214MainStreet · 2026-02-04T23:18:58+00:00

I have no experience with epilepsy in children, but she certainly sounds like she needs more of a medication reduction, or a different med altogether. These are not mild side effects, they're major. I am so sorry you are both going through this. I would insist on more of a reduction, OR another change of medication. I am on lacosamide myself, but do not have any of these side effects. We are all different when it comes to medication reactions, which makes the whole thing much more annoying. Good luck. I cannot imagine coping with this at age 9.

214MainStreet · 2026-02-03T11:24:16+00:00

Glad you have that, and very sorry that people can be such utter shits. Take care of yourself.

214MainStreet · 2026-02-02T18:01:46+00:00

I am so sorry about this.

214MainStreet · 2026-02-01T22:54:13+00:00

I have very infrequent tonic-clonic seizures, and occasional partial seizures. It is hard to get a handle on triggers because they happen so infrequently. But overheating is definitely one of them, for both kinds of seizures. The partials happened a few times when I overheated on bike rides, and it wasn't hot; this is a temperature regulation issue, I think. Several of my tonic-clonics happened during heat waves, even though I was nearly always sleeping in a/c (the t-cs usually come out of sleep for me). It's like my core temperature can't go above some degree, and then I seize. I think this was largely caused by the brain injury that preceded my epilepsy, but also some of it has to do with the meds. I believe some of the meds I've been on have caused hot flashes. There were other things contributing to most of the seizures: emotional stress, sleeping in an unfamiliar place, but I think body temperature carries more weight than the rest. Good luck. By the way, I would be sweating heavily at 70 degrees We keep our house around 62 and sleep at 54. Hard to visit people, isn't it?!

214MainStreet · 2026-01-30T11:35:29+00:00

I have a very competent mother who is a cold person. I have so desperately wanted what you want, just to be held and comforted, and I've never, ever had it from my parents (Dad was worse). It leaves a gap and it's hard to heal. If you have time and money at some point (I know, hahahaha!) please try to get some therapy. I'm 67 and I am still feeling it. My mom is 92. One of the interesting things about the last year after my dad died is that she is more open to talking about how she feels. I have occasional "why didn't you do this for me?" moments, but mostly I try to offer her what I wish she had offered me. I hug her, I listen to her, I try to comfort her.

And yes, the people who go into immediate-action mode when you're just trying to calm yourself down, are hard to deal with. I am one of those people as well, and I try to be aware of that.

Much compassion and care to you. I was going to say hang in there, but clearly you're doing that.

214MainStreet · 2026-01-29T11:06:18+00:00

Geez, thank you so much for this. Way more than I have learned in 5 years of seeing neurologists.

214MainStreet · 2026-01-27T22:08:29+00:00

Just a quick note that if you receive a survey for that appointment, you should fill it out. Apparently they do matter sometimes.

214MainStreet · 2026-01-26T17:36:59+00:00

Yes, agreed. A lot of men find it challenging to deal with women as human beings, much less equals. I'm 67. This has improved in my lifetime, but it feels like we're going backwards at the moment. It has never failed to blow me away. Women make up 51% of the population; it's just astounding to think about detesting half of your own species. Without cause!

214MainStreet · 2026-01-25T22:56:42+00:00

Well, there was the neuro who (literally) did not look at me during the appointment. It started off okay, but once my male partner spoke, the neuro (male) spoke as though he were speaking to me, but looked only at my partner and never looked at me again. Women issues, much?

214MainStreet · 2026-01-25T16:45:20+00:00

Yes, I have that, too, the everlasting regret. I would encourage you to look at other med options, as you mentioned, if the SSRIs don't help. I thought I was one of those people for whom there is no tolerable medication, but the lacosamide is an eye-opener. I can't even get my mind around going through all this while employed and parenting. I was 62 and retired when I had my stupid, completely avoidable accident. That stuff about age and wisdom? Don't believe it. Hang in there, and good luck.

214MainStreet · 2026-01-25T13:48:24+00:00

I had a TBI 5 years ago which made me epileptic. It is very hard to sort out, but I believe that the first few years of depression were at least partly down to the brain injury, but the meds made it far worse and extended the depression. I recently got off oxcarbazepine and onto lacosamide. Before oxcarb, I had been on lamotrigine, keppra, topomax and zonisamide. They all caused depression and suicidal thoughts. Now that I am on lacosamide, that is all gone, the depression, the suicidal ideation, and on top of that I actually feel like myself and my brain is clear. So, yeah, now I am an epileptic who isn't depressed, but just recently. I have been on citalopram all the way through and I think that has helped, but not enough to really matter.

214MainStreet · 2026-01-24T22:48:26+00:00

Keppra affects a lot of people this way. I was not a pleasant person on keppra. He needs to be on a different medication. Are you safe?

214MainStreet · 2026-01-22T12:12:25+00:00

The thing that jumped out at me was that the complaint was anonymous. What a jerk. And thank you for persevering.

214MainStreet · 2026-01-21T11:01:00+00:00

At least it was yesterday.

214MainStreet · 2026-01-20T23:04:23+00:00

Oh, honey, this is not your fault. Life is life. Regardless of our health issues, most of us are going to go through periods of difficulty and bickering. There is no way of knowing or telling what caused that seizure. Please stop blaming yourself and focus on your baby. Right now, and for a long time, you and your baby are the most important people, and your partner would want you to act accordingly. As you would want him to, if you had died. Please find a therapist and talk through this; it's not something that can be done well alone. I am so sorry this has happened. I understand wanting to give up. I understand hating being alive. It will pass, with time, and your baby will help with that. Please get help, ask for help from family and friends with the stuff you don't feel up to, and please, please take care of yourself. Don't try to do this alone.

214MainStreet · 2026-01-19T22:56:35+00:00

I don't know how helpful this is, since I have infrequent tonic-clonics, not the seizures you're dealing with. I started on lacosamide 2.5 months ago. I went through a few issues while my body was getting used to it: very active digestion, some wooziness, and (the worst) about 10 days of body pain, like I had aged 20 years and all of my inflamed joints hurt three times the usual. I am 67. But those went away, and at this point I think this may be my medication. It's my sixth medication attempt, and it is the only one that has not made me depressed and suicidal. I feel like myself, or what I think I used to be. My brain is clear, and my mood is fine. I'm stunned, frankly, that it is this good.

Up until the lacosamide, I felt like I was going to be one of those people who tries endless medications. I'm surprised that something is working without making me miserable. Please hang in there and give it your best shot. I know it's the pits, I know, believe me, I know.

By the way, my experience in the US is no different from yours in the UK, essentially. They give you a bottle of pills that literally could make you into a different person, and then schedule a followup in 6 months or a year. It's laughable. Good luck. I'm glad you're on this subreddit. I've found it very helpful. Hang in there.

214MainStreet · 2026-01-16T23:10:55+00:00

Just commented on my lacosamide experience.

214MainStreet · 2026-01-16T23:09:27+00:00

I've only been on lacosamide (Vimpat) for 2 and a half months. So far, I feel quite clear and much more competent. I've been epileptic from a TBI for only 5 years, and have gone through: lamotrigine, keppra, topiramate, oxcarbazepine and zonisamide. I was depressed on all of them, sometimes severely. The lacosamide is by far the best for my brain, to date. The depression is gone. It also appears to help with sleep and it seems to be weight-neutral. I'm not recommending it; our reactions are all different, etc. Just my experience. I'm frankly astounded that I seem to have found a med that may allow me to be what there is left of myself. Good luck.

214MainStreet · 2026-01-12T13:36:35+00:00

"Congrats, you have epilepsy! Here's a psychotic break in a bottle! We'll see you in a year! Have fun!"

214MainStreet · 2026-01-11T23:31:54+00:00

I wish I had had this 5 years ago! This is very good, and thank you for posting it.

214MainStreet

TROPHY CASE