painterguy
03-11-2007, 01:03 PM
I have had epilepsy for 39 years, and I am 49 years old today. For the most part I have done pretty good at dealing with it. There are times however like the present when I am having problems and feel like I can't take anymore of this. I often feel as if I am stuck in this world very much alone to myself which no one really understands. I admit that I get a little frightened and worried at times as to my future. I look at my life and it is not where I want it to be because of my epilepsy. I wish I felt stronger emotionally right now. I am afraid to go for a simple walk because I do not feel that clear headed and fear what might happen. I do not drive anymore and that has really hurt me. Friends and family really do not want to bother with driving you here and there. At times I wonder what I did to deserve this, or was there something I did wrong when I was a child. I have been on quite a few drugs unsucessfully and that scares me as well. How many more chances do I have? I am trying to keep myself together and ask any of you to tell me how you deal with it. I am feeling real low right now.
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creativenative
03-11-2007, 03:07 PM
it is hard to live with my daughter was diagnosed with epilepsy 2 yrs ago she is 9 now. And it is a hard to live with. as a mother I am finding it very hard i have had a couple of days of being really stressed. I have been surfing around tryin to find support even just talkin about it. Helps. My daughter has seizures in her sleep they had her on topamax and slowly took her off the meds and changed it because of some side affects. I will say a prayer for you that God gives you the strength to go through what has been happening in your life. Take care of you
Shirley
Shirley
Kodo
03-11-2007, 09:18 PM
Hello painterguy,
I have lived with epilepsy for over 20 years and have often felt the same way you are feeling. I had SO many dreams and goals when I was younger, but my goal began to be just to make it through the day without a seizure, depressive mood swing or some other mishap. Once I tried taking an anti-depressant and it actually caused more seizures. I have asked myself so many times as to why I have the condition, is it is just pure chance, some type of punishment or test?
I do try to remind myself that there are many beings on this planet that have it much worse and not to take what I do have for granted. One method I do use is meditation to help help me relax and deal with the condition and its effects both mental and physical. You can find different methods of meditation all over the internet, so just go with the one that feels right. Although simple it is not easy and does require some discipline, but I have found it to be very valuable and also chemical free!
Best wishes,
kodo
I have lived with epilepsy for over 20 years and have often felt the same way you are feeling. I had SO many dreams and goals when I was younger, but my goal began to be just to make it through the day without a seizure, depressive mood swing or some other mishap. Once I tried taking an anti-depressant and it actually caused more seizures. I have asked myself so many times as to why I have the condition, is it is just pure chance, some type of punishment or test?
I do try to remind myself that there are many beings on this planet that have it much worse and not to take what I do have for granted. One method I do use is meditation to help help me relax and deal with the condition and its effects both mental and physical. You can find different methods of meditation all over the internet, so just go with the one that feels right. Although simple it is not easy and does require some discipline, but I have found it to be very valuable and also chemical free!
Best wishes,
kodo
Trish17
03-11-2007, 11:12 PM
:) :) Happy Birthday!!
I know just how you feel. I think the most depressive part is not being able to drive. We can't just pop up and run to the store, or go on a drive just to get out of the house. The seizures are damaging to your emotional life, and anxiety sort of sets in when you never know if or when it happens, especially among other people. I had to get used to biking or riding the bus, until I started having the courage to ask for rides. I have learned to look at one good side--at least I can see, and I can walk to bus stops. I would like to invite people to do things, and not feel like I'm inviting them to take me.
It has been a tremendous help to find a super support family within my church. God has taken care of me, and I have ( in the past 2 years) found more peace with it all than ever before in my life. They have made me feel like I'm not a burden. I'll pray for you, too. Do you have a support group, or a seizure clinic to meet with others? It really helps to meet other people with health problems. It sounds wierd to say that, but everyone deals with their own health in different ways, and good advice comes from someone else who has been there.
Why do you call yourself Painterguy? Do you paint? I paint as a hobby. Oils, and craft acrylics. It's good therapy.
Take care, and find helpers. Meditation, music and prayer are tremendous helps.
Trish
I know just how you feel. I think the most depressive part is not being able to drive. We can't just pop up and run to the store, or go on a drive just to get out of the house. The seizures are damaging to your emotional life, and anxiety sort of sets in when you never know if or when it happens, especially among other people. I had to get used to biking or riding the bus, until I started having the courage to ask for rides. I have learned to look at one good side--at least I can see, and I can walk to bus stops. I would like to invite people to do things, and not feel like I'm inviting them to take me.
It has been a tremendous help to find a super support family within my church. God has taken care of me, and I have ( in the past 2 years) found more peace with it all than ever before in my life. They have made me feel like I'm not a burden. I'll pray for you, too. Do you have a support group, or a seizure clinic to meet with others? It really helps to meet other people with health problems. It sounds wierd to say that, but everyone deals with their own health in different ways, and good advice comes from someone else who has been there.
Why do you call yourself Painterguy? Do you paint? I paint as a hobby. Oils, and craft acrylics. It's good therapy.
Take care, and find helpers. Meditation, music and prayer are tremendous helps.
Trish
Travis from MN
03-11-2007, 11:34 PM
Painter, think to yourself, what you like to do. Be it fishing, camping, hunting, arts&crafts, sports, ballgames. I think you can see where I am heading. If you can take time off, or a break, RELAX for a week or so. You don't have to do anything if thats what you want. Just remove yourself from your "home" environment. Recharge your batteries so to speak.
It sounds like you are wearing ragged and need to do something different, if only temporary to "mix up" your routine. For me, that can be getting up in the air for an hour or so in a small high wing plane. Come this spring there are the "pancake fly-in's" starting up. See if we can make any of those on float again.
I have a daily-weekly "rut" I am in. When I can break free from that and do something different, out of the norm it helps.
Correct, nobody deserves a medical condition. Babies didn't ask to be addicted to controlled substances before being born. We didn't ask to have epilepsy/seizures. It was something that happened beyond OUR control . Once we accept that, then it's starting to mend the torn fences we have inside.
In my case, I can't change what happened 26 years ago. If they didn't remove the tumor I wouldn't be here now. I Look at it that way. I'm a lot better off WITH seizures after the operation than if they did nothing. I'm alive and breathing. I could drive for a few years. Still have all my fingers and toes, I can talk. Heck there are people who are a worse off than me. I shouldn't complain at all.
Try to see the positive in things...
--Travis
It sounds like you are wearing ragged and need to do something different, if only temporary to "mix up" your routine. For me, that can be getting up in the air for an hour or so in a small high wing plane. Come this spring there are the "pancake fly-in's" starting up. See if we can make any of those on float again.
I have a daily-weekly "rut" I am in. When I can break free from that and do something different, out of the norm it helps.
Correct, nobody deserves a medical condition. Babies didn't ask to be addicted to controlled substances before being born. We didn't ask to have epilepsy/seizures. It was something that happened beyond OUR control . Once we accept that, then it's starting to mend the torn fences we have inside.
In my case, I can't change what happened 26 years ago. If they didn't remove the tumor I wouldn't be here now. I Look at it that way. I'm a lot better off WITH seizures after the operation than if they did nothing. I'm alive and breathing. I could drive for a few years. Still have all my fingers and toes, I can talk. Heck there are people who are a worse off than me. I shouldn't complain at all.
Try to see the positive in things...
--Travis
persian85033
03-24-2007, 05:43 PM
I know. I think I'm only just getting to see the beggining. Imagine, I wanted to learn to assist in surgery, and I did learn, only to find out that the doctor doesn't want me there, because seh doesn't feel comfortable with me, and that it's going to be very hard for me to get a job as anything other than a vet tech assistant, and just cleaning in a hospital. The only two times I got to help in surgery were just with someone else there, and not even paying attention to what I was writing down on the chart, if I was taking the respitory rates rights and so forth, but keeping an eye on me. I never used to think about it much, but now...everyone treats me as though I am disabled, or something. I'm guessing I should just take advantage of it. I just won't mop, after all, I can slip and have an accident while I'm mopping. I shouldn't sweep, I could hit myself with the broom and so forth. I shouldn't use the autoclave, either. Someone else put the packs there, and forgot about them, and they burned. Oh, well. I don't feel comfortable working there anymore, and I'm trying to think if there isn't something else, but I really really used to like my job. I'm just trying to see if I can't do something that pays well. If I'm not going to be able to do what I like, what I do should at least make a lot of money.
kim99
03-29-2007, 12:38 AM
Hi, Dear Painterguy,
I hope I can cheer you up at least a little. You're in my prayers tonight, and finding this chat board may be exactly what I need--talking with other frustrated folks like you helps me feel less isolated in this disorder’s universe. Thanks for joining the group with me! While I haven't had epilepsy as long as you, I did suffer it--along with the weird looks and the teasing--in childhood...and got the mistaken impression when it went away/that I had been somehow cured, or that the "pediatric epilepsy" everyone kept mentioning was just something I outgrew, somehow. Today, though my symptoms might not be as severe as those of others on this site, I still wonder, at times, what did I do to deserve this, and what possible good can come from it. I still cry each time I have a seizure, when I'm told I've had one, and when I have to record it in my seizure journal (thank goodness my husband is glad to do it for me when I really don't feel up to it), and I feel disappointed that the best my doctor can do isn't quite good enough, in my eyes. The idea of having a Vagus Nerve Stimulation device (check online for more details) implanted in my chest scares me quite a bit--especially since no one can guarantee that it'll even work for me!
HOWEVER, I find that a hug from family, a good cry, deep breathing, a cuddle with my cat, and a few simple activities (like Solitaire on the computer or a mindless sit-com on the idiot box) often helps. Sometimes I light candles (I like to use green to symbolize physical health, yellow to represent joy, and blue to stand for emotional healing) and pray or meditate for a little while. I talk things over with my husband, and eventually I get up enough motivation to keep on going, or to ask my doctor about trying something new. Oftentimes, I just try to keep my sights on all that I CAN do--I’m sorry if that sounds so “Spoonful of Sugar”-ish, but it does help, at least a little. (I guess it helps to remind me of all that I might control, in contrast to what sometimes goes on in my head.)
Tell you what: you try to hang in there, and so will I. It might not hurt to discuss an anti-depressant with your doctor, and consider checking in with a compassionate counselor now and then. Not all anti-depressants work well with all anti-convulsants, but there are some that do--and two of them have saved my life during two different phases of my treatment. I figured, “If I can live with the stigma of epilepsy (which I try to keep a secret as much as possible), I certainly can live with the stigma of depression that was likely brought on by the anti-convulsants in the first place!" Besides, clinical depression is pretty fashionable right now! :) Happy painting!
I hope I can cheer you up at least a little. You're in my prayers tonight, and finding this chat board may be exactly what I need--talking with other frustrated folks like you helps me feel less isolated in this disorder’s universe. Thanks for joining the group with me! While I haven't had epilepsy as long as you, I did suffer it--along with the weird looks and the teasing--in childhood...and got the mistaken impression when it went away/that I had been somehow cured, or that the "pediatric epilepsy" everyone kept mentioning was just something I outgrew, somehow. Today, though my symptoms might not be as severe as those of others on this site, I still wonder, at times, what did I do to deserve this, and what possible good can come from it. I still cry each time I have a seizure, when I'm told I've had one, and when I have to record it in my seizure journal (thank goodness my husband is glad to do it for me when I really don't feel up to it), and I feel disappointed that the best my doctor can do isn't quite good enough, in my eyes. The idea of having a Vagus Nerve Stimulation device (check online for more details) implanted in my chest scares me quite a bit--especially since no one can guarantee that it'll even work for me!
HOWEVER, I find that a hug from family, a good cry, deep breathing, a cuddle with my cat, and a few simple activities (like Solitaire on the computer or a mindless sit-com on the idiot box) often helps. Sometimes I light candles (I like to use green to symbolize physical health, yellow to represent joy, and blue to stand for emotional healing) and pray or meditate for a little while. I talk things over with my husband, and eventually I get up enough motivation to keep on going, or to ask my doctor about trying something new. Oftentimes, I just try to keep my sights on all that I CAN do--I’m sorry if that sounds so “Spoonful of Sugar”-ish, but it does help, at least a little. (I guess it helps to remind me of all that I might control, in contrast to what sometimes goes on in my head.)
Tell you what: you try to hang in there, and so will I. It might not hurt to discuss an anti-depressant with your doctor, and consider checking in with a compassionate counselor now and then. Not all anti-depressants work well with all anti-convulsants, but there are some that do--and two of them have saved my life during two different phases of my treatment. I figured, “If I can live with the stigma of epilepsy (which I try to keep a secret as much as possible), I certainly can live with the stigma of depression that was likely brought on by the anti-convulsants in the first place!" Besides, clinical depression is pretty fashionable right now! :) Happy painting!
Cateh64
04-01-2007, 09:06 AM
Hi Painterguy and others. I'm a new member... wish I'd found this forum a while ago. In the last day or so I've been in despair, I thought I was getting on top of my epilepsy, and then WHAM! I've had a major mood swing or something. I got told to take Zoloft by a counsellor at one stage, but when I checked up on it, it was completely contra-indicated for Epilim, which I take, so I haven't had any anti-depressants.
I'm very lucky in many ways - I have a good job, I can drive, I have sleep Epilepsy and its usually well controlled, but last September I had a really bad fit. When I was diagnosed, I was told I had non-degenerative, Myoclonic Juvenile Epilepsy. I had my first Grand Mal at 26. My fits have all been from 3 a.m. - 5 a.m. whilst asleep. For 10 years I had no fits at all - my neurologist said I wouldn't get better, but I also wouldn't get worse.
But now I'm battling severe mood swings, depression, and I think I'm actually causing myself to have seizures because of my stress levels! What can I do?
I have a great husband, and family........ but I guess I've been compartmentalising things...... I want to be living a full life, I don't want to be defined by my disease..... but my emotional state is so fragile right now I need some help.....
I'm very lucky in many ways - I have a good job, I can drive, I have sleep Epilepsy and its usually well controlled, but last September I had a really bad fit. When I was diagnosed, I was told I had non-degenerative, Myoclonic Juvenile Epilepsy. I had my first Grand Mal at 26. My fits have all been from 3 a.m. - 5 a.m. whilst asleep. For 10 years I had no fits at all - my neurologist said I wouldn't get better, but I also wouldn't get worse.
But now I'm battling severe mood swings, depression, and I think I'm actually causing myself to have seizures because of my stress levels! What can I do?
I have a great husband, and family........ but I guess I've been compartmentalising things...... I want to be living a full life, I don't want to be defined by my disease..... but my emotional state is so fragile right now I need some help.....
ififjif
04-09-2007, 01:46 AM
Has anyone tried Lamictal that has depression with epilepsy? I know they use it for complex partial but not sure about other types of seizures. My son was very depressed on Tegretol, especially after we lost everything to Hurricaine Katrina. His seizures returned and they swithched him to Lamictal, which is also used as an antidepressant. He is much more cheerful, positive and can think more clearly than on Tegretol.
Also, God does not punish in this way. My faith tells me all things work together for good to those who love God. I try to think specifically of all the ways God could use his epilesy for the good or even think of bad things that somehow his epilepsy could prevent. I might not ever know for sure but I know that sickness and suffering in this world is unavoidable and the way we respond to is the true test of our faith. Take it one day at a time, make a gratitude list of everything in this world you are grateful for, try to think of any good, real or presumed that may have or will come from your epilepsy.
Try to stop all bad thoughts from comming and replace them with thoughts of being loved by God and having health. I know it takes work because I work it.
Also, God does not punish in this way. My faith tells me all things work together for good to those who love God. I try to think specifically of all the ways God could use his epilesy for the good or even think of bad things that somehow his epilepsy could prevent. I might not ever know for sure but I know that sickness and suffering in this world is unavoidable and the way we respond to is the true test of our faith. Take it one day at a time, make a gratitude list of everything in this world you are grateful for, try to think of any good, real or presumed that may have or will come from your epilepsy.
Try to stop all bad thoughts from comming and replace them with thoughts of being loved by God and having health. I know it takes work because I work it.