Originally Posted by ambrteach
I had my first seizure at 51..i thought it was because i cut a wellbutrin in half for two days weaning myself off....but then EEG showed spike and wave pattern of absence seizures that they said was genetic. So they had me on keppra...couldn't drive for six months..then i had another seizure out of nowhere about 2 years later..a week after i left my husband..I think hormones..specifically low progesterone is one culprit, stress, low on magnesium, full moon or last quarter of the moon and dehydration are others so..i drink powerade..they doubled my keppra but i am so tired, so depressed, never want to be alone...my medical bills are huge cause of these two seizures..i have now instructed my 15 year old not to call 911. It makes me not want to deal with things..I just want to lie around and rest.
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