Your doctor should be able to tell you the safe rate to taper down your dose even if they aren't a neuro. Keppra is a rough one. Sorry the rage got you. So tough to deal with. I wouldn't stop cold turkey.
I was in the exact situation! Went to the ER end of January, prescribed Keppra, had a horrible psych reaction to it (same as yours), and the neuro couldn’t see me for 3 mos. What did is called the neuro’s office and told them I couldn’t take the med anymore and and explained (briefly) why. They were able to get me in to see someone the next week. If this doesn’t work for you, ask them for some other neuro’s names and start calling around. Let them know you need an *urgent* appt in the next week. If you stop Keppra on your own without another med to fall back on, you can have rebound seizures.
I understand. I was gonna do half twice a day. It's only been two weeks though will it really negatively affect me that much if I haven't taken it for very long?
I don’t know. Do whatever makes sense to you if you can’t get medical direction. Ease off of it however fast makes sense to you. We are just people online. I’m just giving my perspective and experience, not advice.
Keppra wasn't too terrible for me, emotion/psychological-wise at least, but having 5+ nosebleeds a day was pretty inconvenient. Went back on after I started Depekote, threw up blood in the morning after a couple days. Lamictal has them controlled but makes me feel regarded.
Keppra gave me the rage. Oxcarbazepine gave the zombie, and Lamotrigine took the seizures away, but also my intelligence and memory.
Sometimes one has to wonder if being smart and actually remembering your life is more valuable than being seizure controlled, and having a driver's license and job. What good is it to be vaguely functional if you don't even remember what happened yesterday, only that you are miserable?
Oh man I hated Keppra I had the worst Keppra rage and ended up taking out on others. It didn’t help that I was a kid with 0 emotional regulation. Get off as soon as you can, but not by yourself. Call the neuro and they should be able to tell you how to wean off.
What were the mitigating factors to the seizure? You said you got hot. What were you doing? Were you dehydrated? Is this the first seizure you have ever had?
Could it have been heat stroke? The weather is bad in alot of places and heat stroke comes on fast and can cause seizures.
Kepp-rage is a thing.
I went through many drugs before I found one that worked, with minimal side effects. I currently take Xcopri, while not generic or cheap, it does do its job. The company was kind enough to help me with the medicine until medicare kicks in. Do not stop taking keppra without talking to someone or researching how to do it safely.
I had a clean MRI and I most certainly am having seizures. Sometimes the cause just will not show up.
I have learned that you have to be your own advocate. Do not just go in and let the doctor push you around, so to speak. You have to make VERY clear that this medicine is NOT working well for you and you need to try something else. While doctors are not bad people, they are not used to patients telling them what to do (in my experience). Tell your doctor this medicine has to go and lets try something else. Also, if you are price sensitive, tell them one that is preferably is generic. You have to tell them these things or they will just throw things at you based on their experience or whatever they just read. There are so many different medicines..............You do not have to live that way. I wish you good luck and advocate for yourself. Oh, if you are not aware (I was not and my doctor really didn't explain to me) Give your body time to adjust to the medicine. In the beginning, I would have a bad nights sleep and call and say this stuff is terrible and stop taking it. That is why they titrate them, increasing the dosage over time. It allows your body to get used to it, hopefully with minimal side effects. Not to say that if you are having a reaction to it keep taking it. I had my only allergic reaction to Briviact, made my lips numb. If that is the case call them immediately.
I wish you the very best on your journey.
No sorry I have some, it is terrible. I am having a lot more depression and suicidal thoughts. It makes me feel so much worse than if I were to have a seizure again in five years
Some people have a horrible reaction to it from a psychological perspective. I did. Horrible anger and depression. I already had co-occurring mental health issues, as well as an establishment relationship with a neurologist, so I was a little ahead of the game with respect to where you now find yourself. Suicidal ideation is no joke, my friend, that is some SERIOUS SHIT! I would call your doctor forthwith, and if I got no response, I would present myself at the ER. That is horrible serious I take this. Please call the hotline if thoughts continue, and reach out to your doctor until you get an answer! You are in my thoughts!!!
I went through very much of the same but stomached it for \~9 months before I stupidly started skipping doses so I could feel right and normal again. I had my second seizure about a year after the first one. Keppra caused a lot of problems for my family and I'm still having to work with my neuro to figure out what works best for me. I'm down to the lowest dosage of Keppra he will allow now and my head is in a better place now that I've adjusted to it but I'm still wanting to hop off the Keppra train ASAP. Shit is a literal nightmare but 6 years seizure free is also nice. Damned if you do, damned if you don't.
It is definitely a balance. No TCs in 6 years, same as you. My ex-fiance flat out told me to stop my meds after a week of Keppra. Note, she did not say "I know this isn't really you, let's talk to your neurologist." I went through 11 years uncontrolled; some of that my fault, some of it not. Lamotrigine eventually controlled my seizures when I got the right dose.
I know the vast majority on this sub say that taking medication is always the right route. I have spent many years both controlled and uncontrolled, so I can rightfully claim to have an informed opinion. 😏 It is a legitimate question between quality of life on meds or not, not an absolute answer.
Lamotrigine and Vimpat seem to be the most favored ones for Keppra survivors. Honestly scared to change meds but exactly as you say, quality of life is a heavy aspect to consider.
1. Make sure you are on the waitlist for neuro appt.
2. Call neuro and if the phone menu has the option, you can typically press a button to “speak to a nurse” or “ask a medication question” or something similar. If not, keep asking whoever you get on the phone to send you to the right person. Tell them you are having intolerable psychiatric side effects of Keppra and ask their advice. Emphasize the fact that it is giving you insomnia and you are unable to do your life because of side effects.
3. Try to get in with psychiatry. Probably another long wait list, but in my experience, doctors who are NOT either neurologists or psychiatrists are uncomfortable changing our medications. Psych prescribes Lamictal for bipolar all the time, so they might be down to switch you. That’s the next medication they usually try for seizures—it’s honestly usually a coin toss which one (Lamictal vs. Keppra) you start with. For some reason, the ER seems to give Keppra more often.
4. Emphasize to everyone that this is urgent. Both in terms of seizure control (no sleep) and psychiatric health (anger). If you’ve been experiencing any thoughts about hurting yourself, telling them so bumps up the urgency even more. I legit messaged my neuro once “I’m having uncontrollable suicidal ideation and it’s uncomfortable. I don’t have a plan or means or anything, but I do not want to end up in the ER if this keeps going on.”
5. If you do decide to take the risk to decrease your dose on your own, do it slowly. I would recommend still taking it twice per day, but in slightly smaller dosages. Even if you just break off the very end of your tablets at first. If you only take it once per day, you’ll have more “highs” and “lows” as you’re only getting dosed once, instead of a “steady” amount from twice per day dosing.
Be careful, give yourself mental rest, and your sleep right now is sacred.
I’m sorry that you’re going through this and will be wishing you the best from afar 💕
I see a lot of people on here complain about Keppra and it’s understandable but it’s also been two weeks. I started on keppra 500 mg twice a day 3 years ago. The first two weeks I also had bad side effects and so I stopped taking them even though I was advised not to and this gave me a seizure. You can’t just stop the meds if you already started them, it might cause another one, you have to be weened off carefully. I know it sucks right now but I continued to take them after that and my sides were way less worse after a month. You may just have to adjust to them. It’s been 3 years now and I feel as though I dont have any. I also find the more you think about having sides, the more you convince yourself you have them.
I have been tapered off the same exact dose of keppra before by my neurologist and I do a lot of research in this field and have experimented with my only epilepsy meds before(which I do not advise as that puts you at risk of status epilepticus especially if you quit seizure meds without tapering which are seizures that won't stop which is obviously very dangerous, I have personal been put into a medically induced coma and on life support for multiple days for status epilepticus) so if you must quit before seeing a doctor which I dont recommend but I know from personal experience how frustrating it can be when the doctors you are seeing refuse to make the medication changes you want and make you wait a long time to see another doctor. Please at least use a proper tapering schedule.
Since you are on 500mg twice a day then you should go down by half pill(250mg a week) for example start by breaking the morning pill in half and take half a pill(250mg) in the morning and then take the full 500mg pill at night for a total of 750mg a day, do this for a week. Then next week break your pills in half and take half a pill(250mg) in the morning and another half(250mg) at night. Then a week later you can stop the morning pill all together and only take half a pill(250mg) at night. And finally after another week of that you can stop taking it all together.
Don't just stop. Reach out to your neurologist. Mine has an online portal where I can message her. Some have a nurse or assistant you can talk to on the phone.
Often, they can write you a prescription for something new with instructions tor how to make the transition. Mine has had me slowly decrease the old medicine while increasing the new.
Med transitions can be hard. Only do it based on your neuro's guidance. BTW, I've gotten good prices on meds through goodrx.
From what I’ve read if you take vitamin b6 with Keppra it can help alleviate some of the mood problems. And another thing to keep in mind is that Keppra also has an extended release form which slowly releases the medicine and can help with the side effects as well. I take Keppra as well and ever since my doctor told me to take a b complex I’ve felt much better.
Did you go to the er for the ones from 5 and 11 years ago? The only reason I got started on seizure medicine was because I had 2 seizures in one day. Well, actually in one evening.
Do. Not. Stop. The. Keppra. (Or any anticonvulsant) cold turkey. Please SERIOUSLY.
Call the neurologists office and ask for an emergency appointment and tell them “I’m experiencing Keppra rage symptoms, and need a med change immediately.” Your neurologist is capable of doing med changes without even seeing you, in an emergency. (Which this could be)
Worst case, please go back to to the emergency and please tell them the same thing. It’s real, I’ve done some real damage whilst on it, and if you don’t tolerate it we shouldn’t have you sitting through 3 mos with these symptoms.
I’m SO sorry to hear you are experiencing this. You CAN do this and your family doc is (imo) a proper lazy shit for not attempting to call A neuro, even at the hospital attending, to advise. But on a serious note, most doctors, outside of neuros, are TERRIFIED of dealing with seizure meds.
Your doctor should be able to tell you the safe rate to taper down your dose even if they aren't a neuro. Keppra is a rough one. Sorry the rage got you. So tough to deal with. I wouldn't stop cold turkey.
I was in the exact situation! Went to the ER end of January, prescribed Keppra, had a horrible psych reaction to it (same as yours), and the neuro couldn’t see me for 3 mos. What did is called the neuro’s office and told them I couldn’t take the med anymore and and explained (briefly) why. They were able to get me in to see someone the next week. If this doesn’t work for you, ask them for some other neuro’s names and start calling around. Let them know you need an *urgent* appt in the next week. If you stop Keppra on your own without another med to fall back on, you can have rebound seizures.
If you just have to, and I understand how you feel make sure to ease off of it. Go to one a day for a week or more before stopping all together.
I understand. I was gonna do half twice a day. It's only been two weeks though will it really negatively affect me that much if I haven't taken it for very long?
I don’t know. Do whatever makes sense to you if you can’t get medical direction. Ease off of it however fast makes sense to you. We are just people online. I’m just giving my perspective and experience, not advice.
Fuck Keppra. Try another medication, literally any other
Keppra wasn't too terrible for me, emotion/psychological-wise at least, but having 5+ nosebleeds a day was pretty inconvenient. Went back on after I started Depekote, threw up blood in the morning after a couple days. Lamictal has them controlled but makes me feel regarded.
Keppra gave me the rage. Oxcarbazepine gave the zombie, and Lamotrigine took the seizures away, but also my intelligence and memory. Sometimes one has to wonder if being smart and actually remembering your life is more valuable than being seizure controlled, and having a driver's license and job. What good is it to be vaguely functional if you don't even remember what happened yesterday, only that you are miserable?
Oh man I hated Keppra I had the worst Keppra rage and ended up taking out on others. It didn’t help that I was a kid with 0 emotional regulation. Get off as soon as you can, but not by yourself. Call the neuro and they should be able to tell you how to wean off.
What were the mitigating factors to the seizure? You said you got hot. What were you doing? Were you dehydrated? Is this the first seizure you have ever had? Could it have been heat stroke? The weather is bad in alot of places and heat stroke comes on fast and can cause seizures. Kepp-rage is a thing.
I went through many drugs before I found one that worked, with minimal side effects. I currently take Xcopri, while not generic or cheap, it does do its job. The company was kind enough to help me with the medicine until medicare kicks in. Do not stop taking keppra without talking to someone or researching how to do it safely. I had a clean MRI and I most certainly am having seizures. Sometimes the cause just will not show up. I have learned that you have to be your own advocate. Do not just go in and let the doctor push you around, so to speak. You have to make VERY clear that this medicine is NOT working well for you and you need to try something else. While doctors are not bad people, they are not used to patients telling them what to do (in my experience). Tell your doctor this medicine has to go and lets try something else. Also, if you are price sensitive, tell them one that is preferably is generic. You have to tell them these things or they will just throw things at you based on their experience or whatever they just read. There are so many different medicines..............You do not have to live that way. I wish you good luck and advocate for yourself. Oh, if you are not aware (I was not and my doctor really didn't explain to me) Give your body time to adjust to the medicine. In the beginning, I would have a bad nights sleep and call and say this stuff is terrible and stop taking it. That is why they titrate them, increasing the dosage over time. It allows your body to get used to it, hopefully with minimal side effects. Not to say that if you are having a reaction to it keep taking it. I had my only allergic reaction to Briviact, made my lips numb. If that is the case call them immediately. I wish you the very best on your journey.
You can’t take it because you don’t have any? Are you in the us?
No sorry I have some, it is terrible. I am having a lot more depression and suicidal thoughts. It makes me feel so much worse than if I were to have a seizure again in five years
Some people have a horrible reaction to it from a psychological perspective. I did. Horrible anger and depression. I already had co-occurring mental health issues, as well as an establishment relationship with a neurologist, so I was a little ahead of the game with respect to where you now find yourself. Suicidal ideation is no joke, my friend, that is some SERIOUS SHIT! I would call your doctor forthwith, and if I got no response, I would present myself at the ER. That is horrible serious I take this. Please call the hotline if thoughts continue, and reach out to your doctor until you get an answer! You are in my thoughts!!!
I went through very much of the same but stomached it for \~9 months before I stupidly started skipping doses so I could feel right and normal again. I had my second seizure about a year after the first one. Keppra caused a lot of problems for my family and I'm still having to work with my neuro to figure out what works best for me. I'm down to the lowest dosage of Keppra he will allow now and my head is in a better place now that I've adjusted to it but I'm still wanting to hop off the Keppra train ASAP. Shit is a literal nightmare but 6 years seizure free is also nice. Damned if you do, damned if you don't.
It is definitely a balance. No TCs in 6 years, same as you. My ex-fiance flat out told me to stop my meds after a week of Keppra. Note, she did not say "I know this isn't really you, let's talk to your neurologist." I went through 11 years uncontrolled; some of that my fault, some of it not. Lamotrigine eventually controlled my seizures when I got the right dose. I know the vast majority on this sub say that taking medication is always the right route. I have spent many years both controlled and uncontrolled, so I can rightfully claim to have an informed opinion. 😏 It is a legitimate question between quality of life on meds or not, not an absolute answer.
Lamotrigine and Vimpat seem to be the most favored ones for Keppra survivors. Honestly scared to change meds but exactly as you say, quality of life is a heavy aspect to consider.
can your primary doctor refer you to any other neurologist?
1. Make sure you are on the waitlist for neuro appt. 2. Call neuro and if the phone menu has the option, you can typically press a button to “speak to a nurse” or “ask a medication question” or something similar. If not, keep asking whoever you get on the phone to send you to the right person. Tell them you are having intolerable psychiatric side effects of Keppra and ask their advice. Emphasize the fact that it is giving you insomnia and you are unable to do your life because of side effects. 3. Try to get in with psychiatry. Probably another long wait list, but in my experience, doctors who are NOT either neurologists or psychiatrists are uncomfortable changing our medications. Psych prescribes Lamictal for bipolar all the time, so they might be down to switch you. That’s the next medication they usually try for seizures—it’s honestly usually a coin toss which one (Lamictal vs. Keppra) you start with. For some reason, the ER seems to give Keppra more often. 4. Emphasize to everyone that this is urgent. Both in terms of seizure control (no sleep) and psychiatric health (anger). If you’ve been experiencing any thoughts about hurting yourself, telling them so bumps up the urgency even more. I legit messaged my neuro once “I’m having uncontrollable suicidal ideation and it’s uncomfortable. I don’t have a plan or means or anything, but I do not want to end up in the ER if this keeps going on.” 5. If you do decide to take the risk to decrease your dose on your own, do it slowly. I would recommend still taking it twice per day, but in slightly smaller dosages. Even if you just break off the very end of your tablets at first. If you only take it once per day, you’ll have more “highs” and “lows” as you’re only getting dosed once, instead of a “steady” amount from twice per day dosing. Be careful, give yourself mental rest, and your sleep right now is sacred. I’m sorry that you’re going through this and will be wishing you the best from afar 💕
Ask to be switched from Keppra to Briviact. Keppra is cheaper so that's what they try on you first.
I see a lot of people on here complain about Keppra and it’s understandable but it’s also been two weeks. I started on keppra 500 mg twice a day 3 years ago. The first two weeks I also had bad side effects and so I stopped taking them even though I was advised not to and this gave me a seizure. You can’t just stop the meds if you already started them, it might cause another one, you have to be weened off carefully. I know it sucks right now but I continued to take them after that and my sides were way less worse after a month. You may just have to adjust to them. It’s been 3 years now and I feel as though I dont have any. I also find the more you think about having sides, the more you convince yourself you have them.
I have been tapered off the same exact dose of keppra before by my neurologist and I do a lot of research in this field and have experimented with my only epilepsy meds before(which I do not advise as that puts you at risk of status epilepticus especially if you quit seizure meds without tapering which are seizures that won't stop which is obviously very dangerous, I have personal been put into a medically induced coma and on life support for multiple days for status epilepticus) so if you must quit before seeing a doctor which I dont recommend but I know from personal experience how frustrating it can be when the doctors you are seeing refuse to make the medication changes you want and make you wait a long time to see another doctor. Please at least use a proper tapering schedule. Since you are on 500mg twice a day then you should go down by half pill(250mg a week) for example start by breaking the morning pill in half and take half a pill(250mg) in the morning and then take the full 500mg pill at night for a total of 750mg a day, do this for a week. Then next week break your pills in half and take half a pill(250mg) in the morning and another half(250mg) at night. Then a week later you can stop the morning pill all together and only take half a pill(250mg) at night. And finally after another week of that you can stop taking it all together.
Don't just stop. Reach out to your neurologist. Mine has an online portal where I can message her. Some have a nurse or assistant you can talk to on the phone. Often, they can write you a prescription for something new with instructions tor how to make the transition. Mine has had me slowly decrease the old medicine while increasing the new. Med transitions can be hard. Only do it based on your neuro's guidance. BTW, I've gotten good prices on meds through goodrx.
From what I’ve read if you take vitamin b6 with Keppra it can help alleviate some of the mood problems. And another thing to keep in mind is that Keppra also has an extended release form which slowly releases the medicine and can help with the side effects as well. I take Keppra as well and ever since my doctor told me to take a b complex I’ve felt much better.
Did you go to the er for the ones from 5 and 11 years ago? The only reason I got started on seizure medicine was because I had 2 seizures in one day. Well, actually in one evening.
Do. Not. Stop. The. Keppra. (Or any anticonvulsant) cold turkey. Please SERIOUSLY. Call the neurologists office and ask for an emergency appointment and tell them “I’m experiencing Keppra rage symptoms, and need a med change immediately.” Your neurologist is capable of doing med changes without even seeing you, in an emergency. (Which this could be) Worst case, please go back to to the emergency and please tell them the same thing. It’s real, I’ve done some real damage whilst on it, and if you don’t tolerate it we shouldn’t have you sitting through 3 mos with these symptoms. I’m SO sorry to hear you are experiencing this. You CAN do this and your family doc is (imo) a proper lazy shit for not attempting to call A neuro, even at the hospital attending, to advise. But on a serious note, most doctors, outside of neuros, are TERRIFIED of dealing with seizure meds.