I am so scared all the time
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Hi cdrake5, welcome!
It can take while to find the right combo of meds/dosages to control seizures, and as Eric says above, that combination can be elusive. Most people have tried more than one med. Make sure your doctors have told you about different meds out there. Have you tried anything other than Keppra? Has the Keppra made any difference at all? Have you had any problems with side effects (it can affect moods). What are doctors suggesting at this point. You may feel scared and a bit lost (that's normal), but you don't have to cede control entirely. Be proactive about your health, find out what your options are, find ways to make yourself happy. And remeber, when stuff gets you down, you can always come here and vent or chat or find a laugh.
Best,
Nakamova
It can take while to find the right combo of meds/dosages to control seizures, and as Eric says above, that combination can be elusive. Most people have tried more than one med. Make sure your doctors have told you about different meds out there. Have you tried anything other than Keppra? Has the Keppra made any difference at all? Have you had any problems with side effects (it can affect moods). What are doctors suggesting at this point. You may feel scared and a bit lost (that's normal), but you don't have to cede control entirely. Be proactive about your health, find out what your options are, find ways to make yourself happy. And remeber, when stuff gets you down, you can always come here and vent or chat or find a laugh.
Best,
Nakamova
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First Off, Welcome! 
I know it can be scary when it comes to seizures and getting them controled. When I was younger, I went from medication to medication trying to control my seizures. I was put on Keppra and Carbatrol around the same time almost 11 years ago. Those two medications together controlled my seizures very well. But the long term side effects of the Carbatrol, it can damage your bone marrow and such, that was something my dr didnt want to see happen if I was on it for a long time, so I got taken off that and since then Im on my second new medication trying it out to see if it holds my seizures.
It is scary, but if youre having some issues with the medication(s) youre on now, make sure your dr knows and ask about other possible medications you can try. My dr tried me on Vimpat and I wasnt on that very long before I had the terriable mood swings. Some medications work for others and some dont.
hang in there! Like Nakamova said, were always here if you need someone to talk to!
I know it can be scary when it comes to seizures and getting them controled. When I was younger, I went from medication to medication trying to control my seizures. I was put on Keppra and Carbatrol around the same time almost 11 years ago. Those two medications together controlled my seizures very well. But the long term side effects of the Carbatrol, it can damage your bone marrow and such, that was something my dr didnt want to see happen if I was on it for a long time, so I got taken off that and since then Im on my second new medication trying it out to see if it holds my seizures.
It is scary, but if youre having some issues with the medication(s) youre on now, make sure your dr knows and ask about other possible medications you can try. My dr tried me on Vimpat and I wasnt on that very long before I had the terriable mood swings. Some medications work for others and some dont.
hang in there! Like Nakamova said, were always here if you need someone to talk to!
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You might try taking a B-Complex vitamin -- it can help with some of the Keppra side effects. And let your doctor know -- either your regular one or your neurologist -- about how you are feeling. They should be able to help with advice about the anxiety. If it is the Keppra causing the anxiety, it might be worth trying a different med. If it isn't the Keppra, they may have suggestions about ways to deal with the anxiety.
Take care,
Nakamova
Take care,
Nakamova
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Hi cdrake5,
There is a small % of people who've tried every treatment possible, and still have seizures. Unfortunately, I am one of those folks. I've had epilepsy now for 31 years and have tried nearly every drug on the market, had a temporal lobectomy and then the VNS surgery, all to no avail. The seizures aren't has bad and often as they once were, but I still have an occasional seizure, also called refractory seizures.
http://www.epilepsy.com/epilepsy/seizure_refractory
I still take two AEDs, Keppra and Topomax, along with an anti-depressant. And for a while, I was talking to a therapist as I was experiencing depression, anxiety, so maybe you could also seek out a therapist.
Endless
Even Keel
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cdrake5,
Welcome!
Sometimes I'm scared all the time, too. We have lots of reasons for the fear, most of which we can definitely do something about.
The first thing is the meds. Medications effect everyone differently, but your medications could be causing your anxiety. Be sure to mention this to your doc and he may either reduce your dosage, switch you to another drug, or give you anti-anxiety meds to help out.
The second thing is the seizures themselves. The seizures do things to our brains. Again, everyone is different. I get a seizure aura (warning) that can last 10 minutes or a whole day. I feel this sense of fear and doom. The way to make those go away is to get the seizures under control.
For some people, the seizures themselves have caused changes in their brains that need a little help to make life better. Do you have temporal lobe seizures? If so, lots of them happen near or in the amygdala, which controls primitive emotions. Permanent changes in that part of the brain can result in feeling afraid, nervous, anxious all the time. YOur doc could help with this, too, by prescribing an anti-anxiety med.
The last category is one we all share in here. We are under intense stress in a really bad situation. All of us face intense unknowns that could rock our world on a day to day basis. All a very good reason to feel afraid or anxious. Counseling can help. A prescription for anti-anxiety meds can help, too.
Talking with the people in here is one of the things that overall, helped me the most. I regained my sense of knowlege and power over what is happening to my own body. I learned that I have options. I learned that my doctor works for me, and I'm entitled to the very best care. I also learned that there are so many things I can do other than meds that help me get my seizures under control.
Knowledge is power.
Big hug. Hang in there.
Welcome!
Sometimes I'm scared all the time, too. We have lots of reasons for the fear, most of which we can definitely do something about.
The first thing is the meds. Medications effect everyone differently, but your medications could be causing your anxiety. Be sure to mention this to your doc and he may either reduce your dosage, switch you to another drug, or give you anti-anxiety meds to help out.
The second thing is the seizures themselves. The seizures do things to our brains. Again, everyone is different. I get a seizure aura (warning) that can last 10 minutes or a whole day. I feel this sense of fear and doom. The way to make those go away is to get the seizures under control.
For some people, the seizures themselves have caused changes in their brains that need a little help to make life better. Do you have temporal lobe seizures? If so, lots of them happen near or in the amygdala, which controls primitive emotions. Permanent changes in that part of the brain can result in feeling afraid, nervous, anxious all the time. YOur doc could help with this, too, by prescribing an anti-anxiety med.
The last category is one we all share in here. We are under intense stress in a really bad situation. All of us face intense unknowns that could rock our world on a day to day basis. All a very good reason to feel afraid or anxious. Counseling can help. A prescription for anti-anxiety meds can help, too.
Talking with the people in here is one of the things that overall, helped me the most. I regained my sense of knowlege and power over what is happening to my own body. I learned that I have options. I learned that my doctor works for me, and I'm entitled to the very best care. I also learned that there are so many things I can do other than meds that help me get my seizures under control.
Knowledge is power.
Big hug. Hang in there.
I think part off the reason I freak out at night when trying to sleep. When I have my seizures that's always my last thing I can remember. Going to bed, then I wake up somewhere and I have no idea how I got their. I am so glad I found this site. Talking to people who know what (fear) I am talking about.
Endless
Even Keel
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I know what you mean, CD. Sometimes I freak out going to bed, too. For years I've had fear seizures at night. They wake me up usually between the hours of 2 and 3am. I didn't realize the seizures were the cause, but I was terrified of sleeping. Thank god after my diagnosis of seizures I put two and two together and figured out why I was so scared at night. I'm so much better now. I still get scared when I'm going to bed, but not at the panic level it used to be.
Some of it I laugh about now. I was petrified of the phone ringing. I wouldn't answer it, and I'd go somewhere in the house where I felt safe to hide from it. Crazy, huh? Well, after diagnosis I figured out I probably had a fear seizure or two or 10 while talking on the phone or when it was ringing, and generalized the fear I was feeling to the PHONE. Once I figured that out, it was easy fixing it. Every time the phone rang I just said to myself, it's the seizures, NOT THE PHONE I'm afraid of!!!!! The phone is SAFE!!!!! It took some months of that, but now I happily answer the phone.
I'm working on a whole list of phobias I think I got this same way.
Seizures sure do mess with our minds. And this is just ONE of the ten million ways.
Some of it I laugh about now. I was petrified of the phone ringing. I wouldn't answer it, and I'd go somewhere in the house where I felt safe to hide from it. Crazy, huh? Well, after diagnosis I figured out I probably had a fear seizure or two or 10 while talking on the phone or when it was ringing, and generalized the fear I was feeling to the PHONE. Once I figured that out, it was easy fixing it. Every time the phone rang I just said to myself, it's the seizures, NOT THE PHONE I'm afraid of!!!!! The phone is SAFE!!!!! It took some months of that, but now I happily answer the phone.
I'm working on a whole list of phobias I think I got this same way.
Seizures sure do mess with our minds. And this is just ONE of the ten million ways.
Katie
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Hey there, you aren't alone. I suffer from anxiety disorders too. Do you see a psychiatrist? You can PM me with this info if you want, and we can get a little more in depth. If you're comfortable with posting it here, that's fine too.
My anxiety is very much affected by medications. Keppra worked very well for my seizures but having lived with anxiety my entire life, I was not willing to take a medication that made it worse. I was sad to stop Keppra, but I needed to.
Go through different meds. Seizure meds, anxiety meds, etc. Depending on what kind of seizures you have, they may actually be related. My seizures are in my frontal lobes, an area also responsible for anxiety. While the connection can't really be proven yet, I really think mine are linked.
My anxiety is very much affected by medications. Keppra worked very well for my seizures but having lived with anxiety my entire life, I was not willing to take a medication that made it worse. I was sad to stop Keppra, but I needed to.
Go through different meds. Seizure meds, anxiety meds, etc. Depending on what kind of seizures you have, they may actually be related. My seizures are in my frontal lobes, an area also responsible for anxiety. While the connection can't really be proven yet, I really think mine are linked.
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This website explains auras:
http://www.epilepsy.com/epilepsy/auras
And another website explaining behavioral side effects of AEDs:
http://www.discoverymedicine.com/An...nd-cognitive-effects-of-anti-epileptic-drugs/
Cint , Thank you so much. I feel like I am taking control back!! Little by Little. my mom says I am obsessing about it. But that "fear" when you wake up and have no idea whats happened the last 24/48 hours. Is terrifying! I have video EEG coming up. My biggest fear is having seizure. The doctors want to intentional bring one on. I am trying to wrap my head around it. but AAAAAAAAAAAAAAAAAAAAAAAAA
Endless
Even Keel
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Aaaaaaaaaaaaaaaaaaaa!
Oh, yes, I agree. It's so hard to not know what you've done or where you've been. But I think I'm getting used to it. I depend on the kindness of strangers.
Don't worry about a seizure in the hospital. They'll have you tucked into a nice bed with padded rails, and you won't be able to get out. It's like a nice big padded crib. At least mine was. There's no way you'll get hurt. They won't even let you use the bathroom without a nurse to babysit you in case you have a siezure. And if you have one, there is a video tape for you to review later! You'll know for sure where you were and what you did. And at the end they'll have their nice EEG with the location in your brain clearly mapped. It will make your doctors very happy. So pray for that seizure to happen ASAP. The faster it happens, the quicker they'll get you back on meds and let you out of there.
In the meantime, you get to eat hospital food, play checkers with your friends, read books, and if you are in a FUN hospital you'll get to surf the internet for hours and hours, playing online games with perfect strangers and/or your friends. You will also be able to post in here about your fun and enriching experience, which we will all read with baited breath. Just ask Momof3boys. We expected an update every day while she was at her EEG.
About entertainment - be sure to ask the hospital if you can bring in your game console, and/or a dvd player to hook up to your TV and some movies. Some hospitals let you, some don't. Also ask if there is wireless internet. (If there is and you don't have a laptop try to borrow one)
Most places with modern telemetry will let you have electronics in the room, but many won't let you charge batteries in the same room (cellphones, gameboys, etc.) You have to charge them out in the bathroom or at the nurses station.
lol... just one more unexpected benefit of having seizures. I can just see someone with their Xbox Kinect having a t/c seizure...... I think they'd definitely WIN!!!! They'd be the ultimate gamer. (I, myself, do not have a kinect)
It's all gonna be okay, kiddo.
Oh, yes, I agree. It's so hard to not know what you've done or where you've been. But I think I'm getting used to it. I depend on the kindness of strangers.
Don't worry about a seizure in the hospital. They'll have you tucked into a nice bed with padded rails, and you won't be able to get out. It's like a nice big padded crib. At least mine was. There's no way you'll get hurt. They won't even let you use the bathroom without a nurse to babysit you in case you have a siezure. And if you have one, there is a video tape for you to review later! You'll know for sure where you were and what you did. And at the end they'll have their nice EEG with the location in your brain clearly mapped. It will make your doctors very happy. So pray for that seizure to happen ASAP. The faster it happens, the quicker they'll get you back on meds and let you out of there.
In the meantime, you get to eat hospital food, play checkers with your friends, read books, and if you are in a FUN hospital you'll get to surf the internet for hours and hours, playing online games with perfect strangers and/or your friends. You will also be able to post in here about your fun and enriching experience, which we will all read with baited breath. Just ask Momof3boys. We expected an update every day while she was at her EEG.
About entertainment - be sure to ask the hospital if you can bring in your game console, and/or a dvd player to hook up to your TV and some movies. Some hospitals let you, some don't. Also ask if there is wireless internet. (If there is and you don't have a laptop try to borrow one)
Most places with modern telemetry will let you have electronics in the room, but many won't let you charge batteries in the same room (cellphones, gameboys, etc.) You have to charge them out in the bathroom or at the nurses station.
lol... just one more unexpected benefit of having seizures. I can just see someone with their Xbox Kinect having a t/c seizure...... I think they'd definitely WIN!!!! They'd be the ultimate gamer. (I, myself, do not have a kinect)
It's all gonna be okay, kiddo.
CD, i know how you feel. Ive been going thru this for about 10 years now, I havent had that many seizures in that time, it still freaks me out when i can feel it comming on. I try to breath and think of some joke i heard, or something funny. It takes your mind off the fear of it sometimes. Thats the way i handle it even though im still scared. I dont know what will work for you but I hope this helps. Dont let the fear control you, its good to talk with people here because they know what your going thru, and it helps.
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I've had epilepsy for about 8 years now and it still hasn't been totally controlled. I've been on all sorts of different meds and I have a VNS. My seizures used to last a very long time, 20 minutes if not longer. Now they last maybe about 5 minutes and the after effects aren't as bad as they used to be.
I've just learned to accept the fact that I've got epilepsy and deal with what comes along with it. It's frustraiting at times but since I've joined this site it's nice to know that I'm not the only one who is like this and it's helped me alot.
Alot of time too if I'm nervous, upset or stressed out about something I'm almost guarenteed to have a seizure so I try not to get worked up about things. As mentioned maybe if you have problems with things like that it might help if you went to see a psych and see if that helps you some.
I've just learned to accept the fact that I've got epilepsy and deal with what comes along with it. It's frustraiting at times but since I've joined this site it's nice to know that I'm not the only one who is like this and it's helped me alot.
Alot of time too if I'm nervous, upset or stressed out about something I'm almost guarenteed to have a seizure so I try not to get worked up about things. As mentioned maybe if you have problems with things like that it might help if you went to see a psych and see if that helps you some.
I am thinking about seeing a phyc, do you think it helps? Im trying my own calming techniques, but when it starts comming on my body takes over and my heart wants to leap out of my chest. maybe it might work not sure, i think ill have to go and see.