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Epilepsy For support and discussion about Epilepsy and Seizure Disorders. |
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01-26-2012, 03:26 AM | #1 | |||
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Legendary
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I too have never driven a car. I am very lucky to have a wonderful DH, who is always there for me.
As Sue said check in with the Epilepsy Foundation of America for some assistance. You might also look in the following form for some assistance. Hopefully you can find some help there. http://neurotalk.psychcentral.com/forum28.html Please keep us up to date. My thought and prayers are with you. Darlene
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. "Life without God is like an unsharpened pencil -- it has no point.
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01-26-2012, 11:35 PM | #2 | ||
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Sue and Darlene thanks you for the information.
I have the info for he epilepsy foundation written down and i will go to the link you provided Darlene. just wanted you guys to know that I did read your posts and wanted to thank you for taking the time to respond to me Sara |
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"Thanks for this!" says: | Darlene (01-27-2012) |
01-27-2012, 10:53 PM | #3 | ||
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01-28-2012, 12:33 AM | #4 | ||
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Hi Ambrteach, I know how you feel. I have had seizures since i was 12 at least that is the first time that i was unconscious with them. I really think I may have had them since early childhood. I had problems in school where everyone would know what they were supposed to do for a certain thing that was taught and I had never heard of it before. just one example was long division. everyone in my class knew what the teacher was talking about and I had never heard her talking about it. this happened on a fairly regular basis and I was too scared to tell anyone because i thought they would think I was crazy. I didn't know anything about seizures or even the word until I started having grand mal seizures in 6th grade. I was hospitalized for a week while they did all the tests at that time. Back then They did EEG's which were very painful as they didn't "glue" the electrodes to you head like they do now back then they stuck them into you scalp. I would end up with about 35 scabs on my head and they alwasys told me oh we don't pierce the skin-right! Anyway, I have only had one EEG that showed seizure activity and that was when I was 13 so I was put on dilantin back then and was on it until i was 18 at which time they decided I didn't have epilepsy so i was weaned off the drugs and IO didn't ave any seizures for about 4 years and then had my first complex partial seizure when I was pregnant with my first child. I have three adult kids now and i believe I only had seizures with the first pregnancy. So, i had my babies in the 80's and early 90'slast one was in '91. In '93 I was under a lot of stress. i was trying to take one class at the University(I never finished college) and that didn't work out and I was just all over the place driving my kids to all of their activities and working a job partly from home nd partly from the clinic that was a 45 minute drive away always in rush ohour traffic. then the kicker was my husband who was a Surgical Resident and had promised me he would go into private practice and stay in Mpls. where we lived, decided to take a job at Yale University in New Haven CT. We were having marital problems and I was having seizures by then and also broke out in a rash head to toe and it ended up being from strep and depakote which I was on for the seizures. I had it for more than 6 months and my husband would not touch me. i felt like a leper. if I went out people would stare as it was all over my face and scalp and arms, legs, everywhere. so I covered up as best I could and was finally taken off the seizure med. My neurologist said the rash was worse than the seizures. this is sort of a synopsis of part of my life and I did get depressed especially when I couldn't drive. I have been on and off driving since I first got my licence when I was 18. Currently I can't drive and in Nov. had a status seizure where I had over 26 seizures in over an hour and was air lifted to a hospital in Tucson. I now have more medical bills so I can empathize with you as I have no insurance and have racked up the medical bills over the past 3-4 years. It is stressful. i was late paying on one bill by 30 days and only made a partial payment as I can't afford to pay them all at once and I already got a call from a debt collector on that one! It's crazy. It's stressful and yes it can be depressing. Sorry for the long story. i want you to know you aren't a lone and that there are so many more people out there in similar situations. i was never afraid to be alone and never afraid to go out in public. i have been lucky in that everyone who has witnessed a seizure and I had them in school from 6th grade through senior year and then now in my life everyone has been so good about it and they accept me for me. After the status incident in Nov. I was afraid to be alone for the first time. I was married for 19 years and my husband divorced me because I have fibromyalgia and he doesn't believe it exists he also thought that I didn't "really" have a seizure disorder and he's a doctor! But then I was with my boyfriend for 8 years and he was very good about the seizures. they increased a lot when I was with him because of some incidents that brought more on. And he accepted them and was just very good about it. he could tell before I had one and usually was able to get me somewhere safe to have it. but, he broke up with me about 2 years ago now so I have been alone. but last year i lived in Mpls. where I have friends and most of my family lives there. i decided to move back to AZ to a little town that I have loved since I first came down here in 2005. i lived here first with my boyfriend but have many friends here and they have all been wonderful. You would be amazed at how many people just accept it and still care and don't care that you have seizures. i am. i have a pretty full life. I do have major fatigue and pain from the fibro., and arthritis, so I have to take a nap everyday but I am an artist and painting feeds my soul. I began painting after my divorce in 2002 as a kind of therapy. I am self taught but have read lots of books. for me this has been the best thing. If you can find some kind of creative outlet that helps you feel better about yourself it might help. Or maybe take a fun class with community education. An art class or writing or whatever you might be interested in. there are so many different things out there that you could try, and then you will meet people too, and make some friends. Maybe join a book club. just something to get you interested and maybe meet some friend and get out of the house. i know you can't drive but do you have a bus system or friends that would be willing to drive you? Or maybe you could call a local church and see if they have volunteers that drive people who can't drive to get out and about. i'm just trying to give you some suggestions. it sounds like you are depressed and maybe you should talk to your doctor about that. It sounds like you were on an antidepressant before the seizures started so maybe they need to change your meds or change the dose. It might be good to find a support group for epilepsy. I know some of the people here have more suggestions too. just know that you are not alone. i just turned 50 myself and had gone 3 years without any seizures. but i was unable to get one of my seizure meds for a week which led to the status seizures. I try not to dwell on the bad stuff as there will always be obstacles for any of us to overcome. but thee are many things we can do. and there are groups online just like this one where you can meet people just like you and help you in any way we know how. You have come to the right place and I hope you can get the help you need so that you can enjoy your life again. Take care, there are a lot of people here who care Sara |
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01-28-2012, 02:37 AM | #5 | |||
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Legendary
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ambrteach,
Hello and welcome, happy to see you have come to be with us, it a great place to be for a supportive and relaxing place. Our shoulders are here for support in many ways. I have had epilepsy ever since I was 10 and now I am 58. So I just feel it is part of live. I did have surgery in 2009 and have not had another one since and it really feels good, but since I had it in early life I just lived with it and found out who was my friends. My DH has always stood right beside me and so has our children. Back when I was having them I wood have them a few days before my period, so I knew when it was coming. Most of them accorded in the summer time, everyone is different. Some of the many these to do is, always stay away from flashing lights as in a theater, take Vitamin B complex, nutra sweet (aspartame) which causes more electrical activity. Hope I have help you out. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. Darlene
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. "Life without God is like an unsharpened pencil -- it has no point.
Last edited by Darlene; 01-28-2012 at 02:59 AM. |
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01-29-2012, 02:35 PM | #6 | ||
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Hi ambrteach,
Wecome to the forum! Depression is all part of epilepsy as well as dizziness and feeling tired. I've had epilepsy since I was 10 yrs. old and I'm 49 yrs. old now. You mentioned that you took wellbutrin this drug is an anti depressant which will reverse the effects of your keppra. Also it has been proven that Wellbutrin can cause seizures for some people and you should let your Dr. know about this immediately. If you are having the same type of seizures that others in your family are having then it could be genetic but if you are having a different type of seizure than those in your family then it is not genetic. Years ago my neuro thought my seizures were genetic but all of my family members had grand mal seizures where I only had absence and complex partial seizures. I would get off of the wellbutrin and start taking vitamin B12 1000 mcg. once a day to see if that helps or try taking vitamin B Complex vitamins once a day. Cut back on the caffeine, starch foods and carbs. Hormones changing has a lot ot do with it. If you like peanuts or any type of nuts start eating them because they have progesterone oil in them and it helped me control my sz. when I went through my change. I wish you the best of Luck and May God Bless You! Sue |
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01-29-2012, 03:09 PM | #7 | ||
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Thanks, darlene and sara for welcoming me. My cousin who has MS told me about Neuro talk and said there is an epilepsy forum.
i am a teacher and so i am out and stressed all day...47 kids in one class...when i had had my seizure before, my neuro said after 3 months of no seizures, that if i couldn't get a ride i could drive back and forth to school on the side roads..no highways, not at night, so that is what i do. I guess I am lucky in that if this is something genetic, I have only had two seizures and now i am on 1000 mg of keppra twice a day. My second one, my daughter said was not as long or violent, so the 500 mg twice a day was doing something. Interesting sara, you said you were artistic...don't know if you have done any historical research on epilepsy, but me being the geek i am know that Julius Caesar, Alexander the Great, Isaac Newton, all had seizures and it was considered divine...lol...in fact people were supposed to be seers who could foretell the future when they went into fits or a trance..lol..anyway.i have a spike and wave brain pattern..the doctor said my brain waves are too active...i am like "duh, i'm a math teacher"...he also said he sees a lot of scarring behind my eyes..can't think of anything other than a metal swing in my face when i was 5..two black eyes and a bloody nose...lol..in those days no mri, ct etc..i am glad to come to this forum and read your posts and advice..thank u for being here Quote:
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01-29-2012, 07:53 PM | #8 | ||
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Hi ambrteach,
I'm glad to hear that you are a teacher. I also work in public school as a teacher aide in Special Education so I can relate to how school can be stressful. I have noticed in the summer months I have fewer seizures than during the school yr. You mentioned that you had some scarring, the same thing happened to me I have scares on both the right and left temporal lobe and this is what caused my seizures. I had brain surgery twice to help reduce my seizures and it was a big help. I get into writing poetry and short stories as well as studying history. My Dad was a Science teacher and he taught physics which was way to hard for me. I would take Biology any day over physics. There are many famous people who have epilepsy like Elton John, Prince, Danny Glover, Edgar Allan Poe, Agatha Christy, Alan Faneca who played professional football for the NY Jets and the Arizonia Cardinals. and many more famous people. If staff and students use cell phones while at school take note if this triggers seizures for you. I found out that I was cell phone sensitive and when to many people are using cell phones around me I end up having seizures. I saw a pattern with my seizures early in the morning before school started and then again during the lunch breaks at school it was then that my Epileptologist found out that staff and students were using cell phones at this time triggering seizures for me do to the frequency that the cell phones are in. Here's wishing you well and May God Bless You! I also had an aunt who lived in Florida that had MS. Sue |
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03-19-2012, 09:04 PM | #9 | ||
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HI,
I started having abscence seizures in June 2011, went to a neuro and they did an EEG, MRI, CT and found nothing to cause them. Unfortunately they did not go ahead and put me on any anti seizure meds either. The abscence seizures, auras, etc continued and I had a GM seizure in Nov. 2011. They did all the same tests again and did not find a cause. Before I got out of the hospital they did suggest that it was due to perimenapause. According to my hormone levels at my previous check ups I had been perimenopausal for about a year. They prescribed 250 mg Keppra twice a day. I started on this but reduced to one per day because I literally did not want to move off the couch. I have had one aura since taking the med, I took another Keppra and it passed fairly quickly. I just turned 50 in Feb, I am hoping that the Keppra continues to work for me. Quote:
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03-20-2012, 12:32 AM | #10 | |||
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Legendary
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loridawn, Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways. I started having seizures since I was real young. At this time I am on Keppra and it has help some. I feel you did the right thing and ease on to the medicine. At one time in my life I got too much dilantin in my blood stream and I felt just like you did, so I was eased off my dilantin. Some of the many things to do are, always stay away from flashing lights as in a theater, take Vitamin B complex, nutra sweet (aspartame) which causes more electrical activity. Hope I have help you out. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. Darlene
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