Years ago, my neurologist and my primary physician took me off of my seizure medications because the side effects were worse than my seizures. My neurologist told me that there are patients that the side effects are worse than their seizures and he just dismissed me. I have always been and still am sensitive to medications. I can take something for just a few days and then it's like it has built up in me and then I start having side effects like I'm overdosed. When I leave it off, the side effects wear off. Because of this, I still don't take seizure medications. I have some family members who think they know better about my health than I do. They are trying to get me to go back to the doctor. When I try to explain, they come back with that was decades ago and they won't leave me alone. Well, I have been reading on these forums about how people are reacting to today's drugs and it isn't encouraging at all. What are the side effects from today's medications. They think that today's medications are improved from side effects but from I've been reading, it doesn't sound like it to me. Some are tiredness and sleepiness. What am I missing? I know there's more but I can't think of them now.
What are the side effects taking today's seizure medications?
- Thread starter KathyJJ
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MountainMama
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I am also very sensitive to medications and have a history of adverse drug reactions. When I started Vimpat I was very nervous because the side effect list was...terrifying. Suicidal ideation, increased depression/anxiety, fatigue, blurry vision, lack of coordination, etc. But I randomly started having seizure clusters that left me unable to do anything but sleep.
I am really happy to report that I have had almost no side effects and feel much MUCH better than before I started taking it. Surprisingly it totally eliminated my depression/anxiety/suicidal thoughts as well as my compulsive behavior and intrusive trauma flashbacks. I also lost some weight (about 12 pounds). It did make my migraines much worse, but that is resolving now (with the addition of verapamil) and I had some hair loss for the first two months but that has also resolved now. The only other side effect I can think of is that I mix up words when I speak now. For example I often say apartment when I mean appointment. That sort of thing.
Over all, I do feel much better than I did before, and my husband says I'm like a whole different person. Much happier, much less weighed down with irrational fears.
I can't speak for any other medications, or for anyone else's experience, but mine has been really positive so far which is so very unlike me. Ha! Normally I'm the person who gets the worst side effects.
I am really happy to report that I have had almost no side effects and feel much MUCH better than before I started taking it. Surprisingly it totally eliminated my depression/anxiety/suicidal thoughts as well as my compulsive behavior and intrusive trauma flashbacks. I also lost some weight (about 12 pounds). It did make my migraines much worse, but that is resolving now (with the addition of verapamil) and I had some hair loss for the first two months but that has also resolved now. The only other side effect I can think of is that I mix up words when I speak now. For example I often say apartment when I mean appointment. That sort of thing.
Over all, I do feel much better than I did before, and my husband says I'm like a whole different person. Much happier, much less weighed down with irrational fears.
I can't speak for any other medications, or for anyone else's experience, but mine has been really positive so far which is so very unlike me. Ha! Normally I'm the person who gets the worst side effects.
Loopy Lou
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It's a tricky question to answer because everyone reacts so differently.
Common side effects from most E medications include sleepiness/insomnia, dizziness and nausea, and a lot of side effects can wear off or become less noticeable after it has been in your system for a while.
I can only use my own experiences here, and i'm sure other people will add theirs.
For example, i'm on a medication called Topamax (topiramate). Whenever i started it or when i increase in dosage, i get side effects such as taste disturbances, tingling fingers and toes, fuzzy head and and extreme sleepiness, but these ease off after a couple of weeks to something more manageable.
I've had awful side effects from some medications where others have tolerated them very well (for example MountainMama seems to do well on Vimpat, and i attempted suicide on it), and conversely i get barely any side effects from Keppra, whereas mood disturbances and sleepiness are big ones for other people who take it.
Guess what i'm saying is the only way you can find out is by trying different medications and seeing which ones work best for your seizure control, and with the least side effects.
Finding the right balance between quality of life and seizure control is probably one of the biggest hurdles, as i'm finding out also lol.
Common side effects from most E medications include sleepiness/insomnia, dizziness and nausea, and a lot of side effects can wear off or become less noticeable after it has been in your system for a while.
I can only use my own experiences here, and i'm sure other people will add theirs.
For example, i'm on a medication called Topamax (topiramate). Whenever i started it or when i increase in dosage, i get side effects such as taste disturbances, tingling fingers and toes, fuzzy head and and extreme sleepiness, but these ease off after a couple of weeks to something more manageable.
I've had awful side effects from some medications where others have tolerated them very well (for example MountainMama seems to do well on Vimpat, and i attempted suicide on it), and conversely i get barely any side effects from Keppra, whereas mood disturbances and sleepiness are big ones for other people who take it.
Guess what i'm saying is the only way you can find out is by trying different medications and seeing which ones work best for your seizure control, and with the least side effects.
Finding the right balance between quality of life and seizure control is probably one of the biggest hurdles, as i'm finding out also lol.
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Hi KathyJJ,
I've had many different side effects from seizure meds. The worst thing that happened was when I was put on Neurontin it caused me to have absence status seizures where I would be out of it from 30 min. to 2-3 hrs. my Dr. took me off of that after a month. As others have mention I get tired, poor balance, short term memory isn't as good and sometimes I've gotten very moody especially when I was taking keppra.
My neuro did a DNA test on me and drew a few tubes of blood and took a Q-tip and got some salvia from the side of my mouth. All of that was sent to the lab and the lab tech could see the amount of enzymes in my liver and my body chemistry, then my Dr. was able to see I was drug resistant to all seizure meds out on the market now and I was put on CBD (med. marijuana) in most cases Drs. will be able to match a persons enzymes and body chemistry to the best seizure med with the least side effect. I wish you the best of luck and May God Bless You!
Sue
I've had many different side effects from seizure meds. The worst thing that happened was when I was put on Neurontin it caused me to have absence status seizures where I would be out of it from 30 min. to 2-3 hrs. my Dr. took me off of that after a month. As others have mention I get tired, poor balance, short term memory isn't as good and sometimes I've gotten very moody especially when I was taking keppra.
My neuro did a DNA test on me and drew a few tubes of blood and took a Q-tip and got some salvia from the side of my mouth. All of that was sent to the lab and the lab tech could see the amount of enzymes in my liver and my body chemistry, then my Dr. was able to see I was drug resistant to all seizure meds out on the market now and I was put on CBD (med. marijuana) in most cases Drs. will be able to match a persons enzymes and body chemistry to the best seizure med with the least side effect. I wish you the best of luck and May God Bless You!
Sue
I agree that AEDs are different for everyone. I've been on nearly every one out there, & joke about feeling like a lab rat.
I've taken: Tegretol, Phenobarbital, Primidone, Mysoline, Dilantin, Neurontin, Keppra, Depakote, Topamax, Vimpat, & Lamictil. I'm on Vimpat and Topamax now.
Tegretol caused an extreme allergic reaction--rash, high fever, & hair loss. Keppra caused such severe cramps that I was doubled over in pain. My neuron recently wanted to add Lamictil due to breakthrough Complex Partials, but I felt a rash like the one from Tegretol starting on my upper back. Dilantin was stopped due to its long term effects on ones bones. I was taken off of others due to ineffectiveness.
I've taken: Tegretol, Phenobarbital, Primidone, Mysoline, Dilantin, Neurontin, Keppra, Depakote, Topamax, Vimpat, & Lamictil. I'm on Vimpat and Topamax now.
Tegretol caused an extreme allergic reaction--rash, high fever, & hair loss. Keppra caused such severe cramps that I was doubled over in pain. My neuron recently wanted to add Lamictil due to breakthrough Complex Partials, but I felt a rash like the one from Tegretol starting on my upper back. Dilantin was stopped due to its long term effects on ones bones. I was taken off of others due to ineffectiveness.
N Sperlo
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We all react differently to medications. Some medications I've had bad reactions to, and others no reaction to. I do take a medication daily that effects my life, but it is the exchange I make for a "normal" lifestyle.
I would encourage you to work with a doctor and try different drugs that may help. Worst case scenario, none work, but you just may find what you need.
I would encourage you to work with a doctor and try different drugs that may help. Worst case scenario, none work, but you just may find what you need.
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All medications do have side effects. Some folks respond differently to different meds. I've tried 12 meds and some made me nearly catatonic, and some made me severely depressed. Topamax caused anorexia for me and Felbatol made my migraines severe. BTW, Felbatol isn't used much anymore because of the side effects. So you aren't missing anything. It also depends on the type of seizures one is experiencing as to what type of med(s) the dr. prescribes. I had CP seizures with secondary Tonic/Clonic before the VNS. Now I just have CPs, so I take much less meds. Different strokes for different folks.
Topamax is known for causing word-loss & short-term memory issues--so its nicknamed "Dopamax". Phenobarbital & Dilantin both supposedly cause drowsiness, but I didn't have any such issues. My neurologist switched me from the Dilantin to Vimpat not only due to breakthrough complex partials but also the possibility of osteoporosis.
If I could take other medications today without having awful side effects, I wouldn't be so cautious about trying it again. But even today, I can not take the normal dosage of anything that I've tried. I've cut them in half, skipped days, etc. but nothing helps except leaving them off. I can't work out a method that helps whatever I'm taking it for. If I can't take nothing else without getting overdosed, I can't see how seizure medications would be any different. If anything, they could be worse because they should be stronger. As I told one family member, these seizures are just occasionally and the side effects are 24/7. At least I feel better without medications! These family members don't know my body and how medications effect it so they need to mind their own business. Thanks everyone for your responses!
I know what you mean. Sometimes the side effects get so annoying that I tell people I'd rather put up with the seizures than the side effects.
I look at pre-AED photos of myself, it hurts when I see what my hair was like. I once had hair so thick that I couldn't gather it into a single ponytail holder. Thanks to a reaction to Tegretol, I lost 85% of it. Now I have lost most of what little was left due to Topamax.
The memory & "word-loss" issues, are most troublesome. I hate it when I'm talking, know what I want to say, but can't say it. I can actually "see" what I need to say in mind, literally written on paper, but my brain & mouth can't connect.
I look at pre-AED photos of myself, it hurts when I see what my hair was like. I once had hair so thick that I couldn't gather it into a single ponytail holder. Thanks to a reaction to Tegretol, I lost 85% of it. Now I have lost most of what little was left due to Topamax.
The memory & "word-loss" issues, are most troublesome. I hate it when I'm talking, know what I want to say, but can't say it. I can actually "see" what I need to say in mind, literally written on paper, but my brain & mouth can't connect.
I've told some that too but some of them do not believe me. They just believe what they want to believe. Do you have people like that? It makes me mad when they think they know more about how my body reacts to medications than I do. I hope you don't have anyone like that to you.
I do know people like that. I have actually had some people (family members) say that controlling seizures is partly up to the patient--as if I have an on/off switch for them. I can't control my seizures! I've even had cases when complex partial seizures occurred 2 or 3 hours after I my medications.
I think ultimately just you got decide people on forum choose do one thing or other and comparing difference and what to expect.I think on forum people been aware of styles of putting argument up for long time and aware of what's rhetorical and that not always right.You need join in regularly bc I always learn something.
We can give opinion advice tell you what questions to ask the tools to help but only you know
We can give opinion advice tell you what questions to ask the tools to help but only you know
your the one in charge. Dont forget that
Every time i make a medication change, to lower a dose......or get off of a drug......I typically have a seizure.
Than i get everyone (including neuro, GP, family) telling me what i need to do or how i need to avoid this in the future.
I wana tell them to F off. You dont go through this type of stuff. Its not you the the ER bed, lay off.
Ive taken-
Tegretol, Keppra, Depakote, Topamax, Vimpat, Zonisimade, lamictal.
Currently on Vimpat and tegertrol, Klonapin and have a VNS implant. plus CBD mj
Every time i make a medication change, to lower a dose......or get off of a drug......I typically have a seizure.
Than i get everyone (including neuro, GP, family) telling me what i need to do or how i need to avoid this in the future.
I wana tell them to F off. You dont go through this type of stuff. Its not you the the ER bed, lay off.
Ive taken-
Tegretol, Keppra, Depakote, Topamax, Vimpat, Zonisimade, lamictal.
Currently on Vimpat and tegertrol, Klonapin and have a VNS implant. plus CBD mj
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When I was first diagnosed with epilepsy I was also like a lab rat. If you can name the medicine I was probably on it at one time or another at some dosage. It took awhile to figure out what meds worked best because they either didn't work or the side effects were too bad. I don't think I could type long enough to tell you about all the side effects I've had through the meds through the years.
Everyone reacts differently to meds. Just because someone has a certain side effect doesn't mean everyone else is going to have it too. I've read the side effects of the meds I'm on can cause and they are horrible. A few times one side effect is seizures and this is for a med that's trying to control them!
Depending on how bad the side effect is of a med I was on my dr will either take me off of it right away or lower the dosage. If the lower dosage doesn't work with the side effects he'll take me off of it too.
When my neuro found some meds that were working I was on pretty high dosages of them so my neuro suggested getting a VSN. Once I got that I was able to get off of some of them and the dosages greatly reduced of the others. In general my neuro always tries to reduce the dosages of my meds or get me off of them as often as he can. He never likes me on high dosages.
I'm currently on Depakote, Tegretol, Keppra and Lamictal along with the VSN. Really the only side effects I notice I have from these are drowsiness and Kepprage form the Keppra. I get double vision at times but I don't know if that's due to a med or if it's epilepsy. I also have very bad memory and word loss but I don't know if that is caused by a med or having epilepsy either because I've had that right from the start, before I was on any meds.
If you want you could go to your drs and discuss meds. There might be a new one out there that they could suggest. It's your decision to try it or not and see how it works for you. In general it's always your decision to take any meds.
Everyone reacts differently to meds. Just because someone has a certain side effect doesn't mean everyone else is going to have it too. I've read the side effects of the meds I'm on can cause and they are horrible. A few times one side effect is seizures and this is for a med that's trying to control them!
Depending on how bad the side effect is of a med I was on my dr will either take me off of it right away or lower the dosage. If the lower dosage doesn't work with the side effects he'll take me off of it too.
When my neuro found some meds that were working I was on pretty high dosages of them so my neuro suggested getting a VSN. Once I got that I was able to get off of some of them and the dosages greatly reduced of the others. In general my neuro always tries to reduce the dosages of my meds or get me off of them as often as he can. He never likes me on high dosages.
I'm currently on Depakote, Tegretol, Keppra and Lamictal along with the VSN. Really the only side effects I notice I have from these are drowsiness and Kepprage form the Keppra. I get double vision at times but I don't know if that's due to a med or if it's epilepsy. I also have very bad memory and word loss but I don't know if that is caused by a med or having epilepsy either because I've had that right from the start, before I was on any meds.
If you want you could go to your drs and discuss meds. There might be a new one out there that they could suggest. It's your decision to try it or not and see how it works for you. In general it's always your decision to take any meds.