I'm new and a little freaked about this whole business. I guess I have had seizures (simple partial) ever since I was a kid, and never knew what they were. I am now 56 years old and diagnosted with epilepsy. My doctor and I are trying to find the right medicine for me. My biggest problem is sleep, or should I say lack of. I have children and grandchildren and we get together about once a month to celebrate birthdays or just hang out. I have a problem with the fact that my meds don't allow me to drink. So I won't take them if I am going to be drinking. Can I ask what anyone thinks about this? And what kinds of meds is everyone on? How long until you found the right one? How long until the seizures stop? I guess I could live with them but my fear is if I don't get them under control now they might get worse and more frequet. What kind of seizures do you guys have? I have a million questions and no one I know has epilepsy to ask. Thank you.
Hello
- Thread starter cnsgrammy
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Hi cnsgrammy, welcome to CWE!
You've come to the right place -- CWE members have plenty of info and advice to offer, and a wealth of experience to share.
If you are on seizure meds, it's a bad idea to stop taking them just for the occasions when you want to have a few drinks. It's important to stay at a consistent dosage, otherwise your body can't adjust and respond properly. Constantly going on and off meds, or doing so too quickly can actually cause seizures.
That said, the guidelines for drinking have some flexibility based on your metabolism, dose, etc. In general, AEDs and alcohol enhance one another in terms of the sedating effect, so if you're particularly sensitive, then play it safe and don't mix the two. In my case, I'm able to have a few glasses of wine or a cocktail, or a couple of beers, and it doesn't phase me.
I'm on Lamictal, by the way. It's the third med I've tried. They all worked for seizure control, but the side effects were dealbreakers for the other two. My seizures are tonic-clonics (grand mals).
I'd like to give you some concrete answers for your own future with epilepsy, but honestly everyone's experience is different. Some people get control right away, some never get control. Some folks need one med, some need several. A med will have nasty side effects for one person, and be smooth sailing for the next. I hope you are able to find a successful treatment soon. And sleep well too!
Best,
Nakamova
You've come to the right place -- CWE members have plenty of info and advice to offer, and a wealth of experience to share.
If you are on seizure meds, it's a bad idea to stop taking them just for the occasions when you want to have a few drinks. It's important to stay at a consistent dosage, otherwise your body can't adjust and respond properly. Constantly going on and off meds, or doing so too quickly can actually cause seizures.
That said, the guidelines for drinking have some flexibility based on your metabolism, dose, etc. In general, AEDs and alcohol enhance one another in terms of the sedating effect, so if you're particularly sensitive, then play it safe and don't mix the two. In my case, I'm able to have a few glasses of wine or a cocktail, or a couple of beers, and it doesn't phase me.
I'm on Lamictal, by the way. It's the third med I've tried. They all worked for seizure control, but the side effects were dealbreakers for the other two. My seizures are tonic-clonics (grand mals).
I'd like to give you some concrete answers for your own future with epilepsy, but honestly everyone's experience is different. Some people get control right away, some never get control. Some folks need one med, some need several. A med will have nasty side effects for one person, and be smooth sailing for the next. I hope you are able to find a successful treatment soon. And sleep well too!
Best,
Nakamova
huskymom
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Hello and welcome :hello:
I have not tried to mix the two. I am on 3 different anti seizure meds, so I just don't want to take the chance. I am also super sensitive to the effects of alcohol, so it is probably best. I know a lot of the other members have no problems with it. Hope you find what works for you!
I have not tried to mix the two. I am on 3 different anti seizure meds, so I just don't want to take the chance. I am also super sensitive to the effects of alcohol, so it is probably best. I know a lot of the other members have no problems with it. Hope you find what works for you!
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Hi cnsgrammy,
I've had epilepsy for over 30 years and experienced CP and TC seizures. I've tried 11 drugs, had a lobectomy, to no avail, and now have the VNS and take two anti-seizure meds. I still have an occasional CP seizure. On rare occasion do I drink alcohol. As Nakamova said, it is not a good idea to abruptly stop taking the seizure meds. Believe me, doing so can make the seizures worse.
I've had epilepsy for over 30 years and experienced CP and TC seizures. I've tried 11 drugs, had a lobectomy, to no avail, and now have the VNS and take two anti-seizure meds. I still have an occasional CP seizure. On rare occasion do I drink alcohol. As Nakamova said, it is not a good idea to abruptly stop taking the seizure meds. Believe me, doing so can make the seizures worse.
Thank you
Thank you for responding. I am on the 2nd med now. The first one was Zonisamide. It didn't help me sleep much & I had horrible thoughts while trying to sleep so Trazadem was added. Thoughts went away. Sleep, a tad better, seizures were the same. I must clarify. I don't even feel like I should be categorized this way because my "seizures" are just feelings of movement. Once in a while, I will feel like I am going to fall. I don't get them everyday and I sometimes, go for long periods without any. Then when I get them, I'll get several a day, maybe, that last for only seconds. I don't want to seem like a titty-baby, but this went on for years with no answers. When I was finally diagnosted with Simple Partial Seizures and he gave me a pamphlet about them. He handed me one about Epilepsy and I told him That he gave me the wrong one. He told me I could research on the internet but only on the sites in the pamphlet and when I did I found some interesting things. I've had different types of seizures since I was a kid! The kind where things felt like they were farther away then they were and I used to see a carousel in my bedroom in the middle of the night. I thought I was dreaming. Sorry, I got so wordy. I'm new at the whole thing.
Thank you for responding. I am on the 2nd med now. The first one was Zonisamide. It didn't help me sleep much & I had horrible thoughts while trying to sleep so Trazadem was added. Thoughts went away. Sleep, a tad better, seizures were the same. I must clarify. I don't even feel like I should be categorized this way because my "seizures" are just feelings of movement. Once in a while, I will feel like I am going to fall. I don't get them everyday and I sometimes, go for long periods without any. Then when I get them, I'll get several a day, maybe, that last for only seconds. I don't want to seem like a titty-baby, but this went on for years with no answers. When I was finally diagnosted with Simple Partial Seizures and he gave me a pamphlet about them. He handed me one about Epilepsy and I told him That he gave me the wrong one. He told me I could research on the internet but only on the sites in the pamphlet and when I did I found some interesting things. I've had different types of seizures since I was a kid! The kind where things felt like they were farther away then they were and I used to see a carousel in my bedroom in the middle of the night. I thought I was dreaming. Sorry, I got so wordy. I'm new at the whole thing.
Endless
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Hi, cnsgrammy,
I just popped in to say welcome to the forum!
Your questions:
I have a problem with the fact that my meds don't allow me to drink. So I won't take them if I am going to be drinking. Can I ask what anyone thinks about this?
I can't drink either. So I don't. Period.
And what kinds of meds is everyone on? How long until you found the right one?
Lamictal. This is my fifth drug, and I think its finally the right one.
It's different for everybody. Some peoples stop right away. Some people's meds are adjusted for awile until the seizures are under control, and have adjustments every so often. Some peoples are never controlled. Thats called intractible epilepsy. And as for getting worse, I've heard it takes repeated seizures over a very long period of time, or a major seizure (like a huge tc or status epilepticus) before their are permanent chanes in the brain. That said, I think I've been having seizures since teens, and my seizures escallated significantly over the last 5 years.
What kind of seizures do you guys have?
I just popped in to say welcome to the forum!
Your questions:
I have a problem with the fact that my meds don't allow me to drink. So I won't take them if I am going to be drinking. Can I ask what anyone thinks about this?
I can't drink either. So I don't. Period.
And what kinds of meds is everyone on? How long until you found the right one?
Lamictal. This is my fifth drug, and I think its finally the right one.
It's different for everybody. Some peoples stop right away. Some people's meds are adjusted for awile until the seizures are under control, and have adjustments every so often. Some peoples are never controlled. Thats called intractible epilepsy. And as for getting worse, I've heard it takes repeated seizures over a very long period of time, or a major seizure (like a huge tc or status epilepticus) before their are permanent chanes in the brain. That said, I think I've been having seizures since teens, and my seizures escallated significantly over the last 5 years.
What kind of seizures do you guys have?
Hello again
I have some more questions for you guys......how long does it take to find the meds that's right for you? I'm on #2. Is this normal? This is driving me nuts! My sleep is worse and my legs are getting the heebie jeebies a little worse every night. I feel like throwing up my arms and saying..f** it! I'll just live with it. I just have simple partials seizures. Maybe it's not bad enough to go through all this. Any opinions?
Thak you.
I have some more questions for you guys......how long does it take to find the meds that's right for you? I'm on #2. Is this normal? This is driving me nuts! My sleep is worse and my legs are getting the heebie jeebies a little worse every night. I feel like throwing up my arms and saying..f** it! I'll just live with it. I just have simple partials seizures. Maybe it's not bad enough to go through all this. Any opinions?
Thak you.
epileric
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Well I've been trying meds since I was 3 or 4 years old (I'm now 50) and I still haven't found one that can control my seizures.
The problem is that the more seizures you have, the more likely you are to have more & the more likely they are to evolve into stronger & stronger seizures.
The problem is that the more seizures you have, the more likely you are to have more & the more likely they are to evolve into stronger & stronger seizures.
epileric
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No need to be sorry, If ever there was a place to whine this is it (we even have a room to vent in).
Sadly it can take a long time to find the right drug however everyone is different in how AEDs effect them and some do find the appropriate one pretty quickly.
Sadly it can take a long time to find the right drug however everyone is different in how AEDs effect them and some do find the appropriate one pretty quickly.