Hi-ya .. it's my two year anniversary. Adult onset at 38... they have no idea why, did all the usual MRIs, Spinal Taps, EEGs. I'm on Keppra and Tegratol plus Lexapro. Tried Lamictol, Lyrica, and Topamax ... have always been on the Keppra the others where "complements". At first I thought I was special. Almost like I had a instant pass anywhere... I've never had a problem announcing my disorder to anyone. However, I did think all would settle and I'd get my life back... I'd be ME again. I'm not and frankly I'm really angry. And I'm sad. I no longer have tonic clonics (fingers crossed) I have simple partials of various types with no pattern whatsoever. It feels like the meds have taken away my enthusiasm for life and the epilepsy has taken away my confidence. I don't have much support. I'm frustrated and get overwhelmed with simple everyday tasks. I've just realized that this is what I am and must accept it but whew.... that's hard to do.
Anyone else live alone?
- Thread starter Cooper
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borgolibero
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Well , I'm 38 (in march 39) and I do understand you when you say, in you profile:
I live alone, although my family is very near to me, about 5 minutes on a bicicle, and, I feel down... sometimes... well.. maybe often. But I think that is not only a problem of epilepsy... or drugs... it is a different view that you have approcing the terrifying 40 years ... yes, drugs helps a bit, and be alone helps a bit more.
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I live alone, although my family is very near to me, about 5 minutes on a bicicle, and, I feel down... sometimes... well.. maybe often. But I think that is not only a problem of epilepsy... or drugs... it is a different view that you have approcing the terrifying 40 years ... yes, drugs helps a bit, and be alone helps a bit more.
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Hi C, welcome to the forum. :hello:
You are definitely not alone. You are in great company here.
In general, the function of AEDs is to dampen/dull brain activity (to prevent forest fires so to speak). Brain fog is a common side effect with all of them.
There are some things which you can try to help reduce your dependence on drugs (diets, supplements, sleep regimen, neurobehavioral therapy, neurofeedback, etc.). Check out the http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ and the chart in my signature for starting points.
You are definitely not alone. You are in great company here.
In general, the function of AEDs is to dampen/dull brain activity (to prevent forest fires so to speak). Brain fog is a common side effect with all of them.
There are some things which you can try to help reduce your dependence on drugs (diets, supplements, sleep regimen, neurobehavioral therapy, neurofeedback, etc.). Check out the http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ and the chart in my signature for starting points.
RobinN
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Hi Cooper - Welcome to CWE
When I first started doing my research for my daughter, the one thing that jumped out farther off the page was that the Quality of Life-QOL was one of the lowest for those with Epilepsy. That made me very sad, since my daughter was only 14 at the time.
What I focused on was... she lived 14 yrs without seizures. How do I get her body back into sync again so that she can remain seizure free. We tried the meds. That only sent her seizures into over drive. It caused so many other issues, that I could see her QOL going down hill very fast..
So I decided that what I needed to do was to heal her from the inside out. That is why I am such a proponent of nutrition. Are we perfect... NO. But I make every effort to learn all that I can. How nutritional changes can help many neurological issues, and how new ideas in this direction are being discovered daily.
I think the older you are the more difficult it is to repair a broken system. However, I don't believe it is impossible.
When I first started doing my research for my daughter, the one thing that jumped out farther off the page was that the Quality of Life-QOL was one of the lowest for those with Epilepsy. That made me very sad, since my daughter was only 14 at the time.
What I focused on was... she lived 14 yrs without seizures. How do I get her body back into sync again so that she can remain seizure free. We tried the meds. That only sent her seizures into over drive. It caused so many other issues, that I could see her QOL going down hill very fast..
So I decided that what I needed to do was to heal her from the inside out. That is why I am such a proponent of nutrition. Are we perfect... NO. But I make every effort to learn all that I can. How nutritional changes can help many neurological issues, and how new ideas in this direction are being discovered daily.
I think the older you are the more difficult it is to repair a broken system. However, I don't believe it is impossible.
epileric
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Hi Cooper & welcome,
I'm on Tegretol but recently I went through a battery of medications looking for a new one (or a combination) that would stop my seizures & the side-effects from some of them were ridiculous.
What I tried to be aware of is whether the meds were increasing the quality of my life or if I'd be better off with the seizures I have (mine are also partials).
I go through phases of that lack of enthusiasm you talk about but probably not to the same degree. I have found that the more physical activity I do the more it help the side-effects & the seizures. There was a while when I regularly went to the gym & I don't I've ever felt better physically or emotionally & I felt very sharp mentally.
I'm now in line to get Neurofeedback & I"m hoping that helps as well.
I'm on Tegretol but recently I went through a battery of medications looking for a new one (or a combination) that would stop my seizures & the side-effects from some of them were ridiculous.
What I tried to be aware of is whether the meds were increasing the quality of my life or if I'd be better off with the seizures I have (mine are also partials).
I go through phases of that lack of enthusiasm you talk about but probably not to the same degree. I have found that the more physical activity I do the more it help the side-effects & the seizures. There was a while when I regularly went to the gym & I don't I've ever felt better physically or emotionally & I felt very sharp mentally.
I'm now in line to get Neurofeedback & I"m hoping that helps as well.
morgan381
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Hi, Cooper and welcome to CWE!
I'm also on Keppra & Tegratol...I don't live alone--I live with my husband and 3 children and my parents live about 15 minutes away... Even so, sometimes I feel very isolated and down. Part of it, I think, is the meds. They work by depressing the central nervous system--slowing down the firing of neurons within the brain. That affects mood. Another part is that it's difficult for someone who does not have E to fully relate to what you are going through. The folks here can truly relate to what you are going through and are always here to listen and offer support...that's what makes CWE so great.
Like Eric mentioned, physical activity does seem to help. Though you do have to be careful not to overdo it, because for some people, the physical stress can trigger seizures. Not many things make me feel better than the "runner's high" (endorphins). I hope you like it here.
I'm also on Keppra & Tegratol...I don't live alone--I live with my husband and 3 children and my parents live about 15 minutes away... Even so, sometimes I feel very isolated and down. Part of it, I think, is the meds. They work by depressing the central nervous system--slowing down the firing of neurons within the brain. That affects mood. Another part is that it's difficult for someone who does not have E to fully relate to what you are going through. The folks here can truly relate to what you are going through and are always here to listen and offer support...that's what makes CWE so great.
Like Eric mentioned, physical activity does seem to help. Though you do have to be careful not to overdo it, because for some people, the physical stress can trigger seizures. Not many things make me feel better than the "runner's high" (endorphins). I hope you like it here.
Nancy
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Hi Cooper ~ I had adult onset too - Nov 1, 1990 - when I was 46. Really difficult to adjust to, isn't it?
It's been more difficult for my husband to take and it's been getting harder and harder instead of easier. So, Dec. 2, this year, I moved out and now I'm living alone. I'm going to learn to get over being sad and "ashamed".
I'm finding it very much easier FOR ME to live alone. I do have the fantastic advantage of now being seizure free thanks to surgery last year and I'm still taking Topamax and Trileptal.
It's been more difficult for my husband to take and it's been getting harder and harder instead of easier. So, Dec. 2, this year, I moved out and now I'm living alone. I'm going to learn to get over being sad and "ashamed".
I'm finding it very much easier FOR ME to live alone. I do have the fantastic advantage of now being seizure free thanks to surgery last year and I'm still taking Topamax and Trileptal.
BuckeyeFan
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:cheers:
Welcome to CWE Cooper. I hope you find this place as helpful as I have over the past year. Though I can't offer much advice on how to handle being alone, I would suggest talking about this with your doctor and Neuro. Both the E and the meds can cause some of the feelings you are having.
I hope you can visit often, because with this gang you won't be alone.
:cheers:
Welcome to CWE Cooper. I hope you find this place as helpful as I have over the past year. Though I can't offer much advice on how to handle being alone, I would suggest talking about this with your doctor and Neuro. Both the E and the meds can cause some of the feelings you are having.
I hope you can visit often, because with this gang you won't be alone.
:cheers:
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:hello: Cooper
Welcome to CWE and make yourself a home,
and you'll find plenty of company here! You're
never alone with us zany folks here that would
keep you laughing for hours! (PS: Just stay away
from the Lounge - and "Why Wedding Dresses Are
White" - because it might just cause you to pee
in your pants from laughing too hard!)
As for brain fogs, feeling spaced out, like a zombie;
it's all too familiar grounds. Likewise the memory
issues - oft hard to discern if it is age or if it was
because of the seizures or both?
Epilepsy Foundation has information for Late Onset
of Epilepsy and you can find out more about it by
clicking on the Epilepsy Foundation logo below and
learning more about it...
Please do make yourself a home here, we're very
addictive here!
Welcome to CWE and make yourself a home,
and you'll find plenty of company here! You're
never alone with us zany folks here that would
keep you laughing for hours! (PS: Just stay away
from the Lounge - and "Why Wedding Dresses Are
White" - because it might just cause you to pee
in your pants from laughing too hard!)
As for brain fogs, feeling spaced out, like a zombie;
it's all too familiar grounds. Likewise the memory
issues - oft hard to discern if it is age or if it was
because of the seizures or both?
Epilepsy Foundation has information for Late Onset
of Epilepsy and you can find out more about it by
clicking on the Epilepsy Foundation logo below and
learning more about it...
Please do make yourself a home here, we're very
addictive here!
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Hi Cooper welcome to the forum.
I lived alone for years when I first moved out.
I had move back home after 2 yrs because of my seizures.
When moved back home moved back out again lived with my sister shortly was on my own again.
I've taken 19 different AEDs not controlled been all my life had E.
I'm on Tegretol, Topamax, and Clonazepam
Belinda
I lived alone for years when I first moved out.
I had move back home after 2 yrs because of my seizures.
When moved back home moved back out again lived with my sister shortly was on my own again.
I've taken 19 different AEDs not controlled been all my life had E.
I'm on Tegretol, Topamax, and Clonazepam
Belinda
borgolibero
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Happy New Year - Buon Anno Nuovo
kayaker4157
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Hi Cooper,
Welcome to the CWE forum. I'm sure that you'll find a lot of helpful information and definitely lots of friendly, supportive people who understand and can relate to what you are experiencing. Much of your post sounds what I've been trying to figure out how to deal with for the past few months since keppra has been added to my zonegran. For me, TCs began out of the blue in my mid 20s, and like you, now with the meds, I mainly have sporatic SPs. Last drs visit I told the neurologist that I just wanted the old me back...to get off this emotional rollercoaster ride...and I think he thought I was joking. But I most certainly was not. Hope things begin to improve for you now that you've found this great site. Happy New Year!
Welcome to the CWE forum. I'm sure that you'll find a lot of helpful information and definitely lots of friendly, supportive people who understand and can relate to what you are experiencing. Much of your post sounds what I've been trying to figure out how to deal with for the past few months since keppra has been added to my zonegran. For me, TCs began out of the blue in my mid 20s, and like you, now with the meds, I mainly have sporatic SPs. Last drs visit I told the neurologist that I just wanted the old me back...to get off this emotional rollercoaster ride...and I think he thought I was joking. But I most certainly was not. Hope things begin to improve for you now that you've found this great site
. Happy New Year!Hi Cooper
Welcome This is a great place. Just sit back and relax. There are many different rooms to do an talk on many different things, there also a room to vent if you need to. The people are wonderful here. You ask questions, people will try and help if they can.
Yes i do live by myself and love it. I love it being quite all the time, just me myself and I. opps and my stuff animals. I have had E since i have been born. Yes these meds do make you feel space out and light headed. I like living by myself this way nobody is looking at me waiting to see when i am going to have a seizure, as i have no idea when my seizure come on.
I find these room helpful and fun, and people are there for me.
Welcome This is a great place. Just sit back and relax. There are many different rooms to do an talk on many different things, there also a room to vent if you need to. The people are wonderful here. You ask questions, people will try and help if they can.
Yes i do live by myself and love it. I love it being quite all the time, just me myself and I. opps and my stuff animals. I have had E since i have been born. Yes these meds do make you feel space out and light headed. I like living by myself this way nobody is looking at me waiting to see when i am going to have a seizure, as i have no idea when my seizure come on.
I find these room helpful and fun, and people are there for me.
skillefer
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Hi Cooper! Welcome to CWE. As you can see, it's a fantastic site with lots of fine people. Before I got married, I lived on my own for close to 10 years. I have grand mals (tonic clonics). Lucky for me at that time they were actually very well controlled. But there were a few times when I had a breakthrough seizure. For me, I loved living on my own. I didn't have to deal with other people's stressful reactions to my seizures. I know they mean well, but man, it can drive a person nuts. Anyway, feel free to ask questions, vent in the padded room, or just chime in.
As you can see, it's a fantastic site with lots of fine people. Before I got married, I lived on my own for close to 10 years. I have grand mals (tonic clonics). Lucky for me at that time they were actually very well controlled. But there were a few times when I had a breakthrough seizure. For me, I loved living on my own. I didn't have to deal with other people's stressful reactions to my seizures. I know they mean well, but man, it can drive a person nuts. Anyway, feel free to ask questions, vent in the padded room, or just chime in.