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New (scared) Girl In Town

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Hello everyone......I'm new to this forum, and thought it might be a good place to get some answers or just talk! Smile I just started having gran mals on a regular basis (regular for me...Aka once a month), and just today I saw a neurologist. He diagnosed me with a generalized seizure disorder, and is waiting for me to have an eeg before he prescribes anything. But this didn't start happening until I was 22. I will be 24 next friday and i'm so scared of everything that might happen. I thought it was due to my hypoglycemia, but he said I would have more symptoms before hand. These just sort of sneak up on me. This last one happened this past saturday while I was shopping for yarn. I was looking, & the next thing I know emt's are surrounding me asking me what day of the week it is. I cracked my head on the floor pretty hard, so i'm still recovering from that.
I read about everyone talking about auras, but what exactly are they? I mean, I know they are tell tale signs, but what are they, & how can I hone in on them more? I'm just terrified of all that could possibly happen. This was only my 4th seizure ever, and there was a year & a half between my 1st & 2nd....Now I can't drive & I have to rely on my husband to take me everywhere. It wouldn't be bad if we lived close to family, but we just moved 3 months ago & that's when this all started happening. I'm sorry if i'm not making sense, but there's just so much going through my head. I'm afraid of the medication once i'm prescribed something, and i'm scared of what can happen if I don't take it. No one in my family knows what i'm going through, since I seem to be the only one with this problem. If anyone has any sort of reassurance or any suggestions that might help make this easier for me to cope with...I would really appreciate it.

Thanks for listening! Confused
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replied June 10th, 2004
Experienced User
I Know Exactly What You Mean!
Hi,
sorry to hear of all your troubles. I can completely relate. When I was 7 I was diagnosed with petit mal. But then when I was 19 I had my first tonic seizure (the first stage of a grand mal). It came as a huge shock. I was in university at the time. I never really thought much of it. However, it didn't go away. That first one happened in the fall. That spring I was involved with a big festival where I went several days with poor meals and lack of sleep which induced 2 seizures. This was when we knew something wasn't right and it wasn't going to go away. I'm 28 now (i'll be 29 in august) and for me seizures seem to come every 18 months or so. It's always due to lack of sleep, stress and the like. This can make it a little scarey sometimes bacause sometimes lack of sleep and stress are apart of life. 2 years ago I had a baby and at first everything was great, but then I got really sick, needed emergency surgery and that induced a couple. Then months later a seizure happened again due to post partum depression..Which I learned I had after the fact.
What I find so frustrating is that i'll be doing great, independant, driving and living a "normal" life, then bam....All of a sudden it feels like the life I knew disappeared in a matter of seconds. I teach gr 2/3 part time and was pleased that I could take my daughter to her babysitter, drive to school, pick her up and run errands if I needed to. Now, my husband has to take her, I have to get drives to work with other teachers and make arrangements for someone to pick up my daughter at the end of the day. I am lucky that my parents do live across town. I can't imagine what it must be like for you. Many times I feel like a complete burden to my husband and family and feel I owe apologies quite frequently for being "a bother". Of course no one else sees it this way...But for me (and probably you) it's hard not to feel that way. I really find it frustrating that I can't take my daughter places. I had her enrolled in a music for toddlers class but now I can't take her because i've not been able to drive for the last 3 months (my last seizure was in march) I go to see my neurologist next friday and am hoping that he says I only have to wait 6 months before I can drive rather than a year.
I'm trying in my head to find the words that express my frustration but there aren't any. Do you feel the same way?
As for advise, all I can do is tell you how I cope. I take 1 day at a time and try to find positives to focus on (although some days they feel pretty scarse). I walk a lot more now that the weather is nice. The hardest part has been coming to terms will all of this and accepting it. Although i've been dealing with this for 10 years, it has only been recently that i've been able to talk about it. That is the other thing you should do, is try to be open about your feelings and talk about them. No doubt it's hard and others cannot completley understand no matter how much they want to. I wish I could tell you one thing that would make it all better for you, but I can't. Just try to tell yourself that you are a valuable person and what doesn't kill us only makes us stronger, as the saying goes.
Good luck and keep in touch.
I hope i've been of some support to you,
kathy
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replied June 10th, 2004
Experienced User
I Know Exactly What You Mean!
Hi,
sorry to hear of all your troubles. I can completely relate. When I was 7 I was diagnosed with petit mal. But then when I was 19 I had my first tonic seizure (the first stage of a grand mal). It came as a huge shock. I was in university at the time. I never really thought much of it. However, it didn't go away. That first one happened in the fall. That spring I was involved with a big festival where I went several days with poor meals and lack of sleep which induced 2 seizures. This was when we knew something wasn't right and it wasn't going to go away. I'm 28 now (i'll be 29 in august) and for me seizures seem to come every 18 months or so. It's always due to lack of sleep, stress and the like. This can make it a little scarey sometimes bacause sometimes lack of sleep and stress are apart of life. 2 years ago I had a baby and at first everything was great, but then I got really sick, needed emergency surgery and that induced a couple. Then months later a seizure happened again due to post partum depression..Which I learned I had after the fact.
What I find so frustrating is that i'll be doing great, independant, driving and living a "normal" life, then bam....All of a sudden it feels like the life I knew disappeared in a matter of seconds. I teach gr 2/3 part time and was pleased that I could take my daughter to her babysitter, drive to school, pick her up and run errands if I needed to. Now, my husband has to take her, I have to get drives to work with other teachers and make arrangements for someone to pick up my daughter at the end of the day. I am lucky that my parents do live across town. I can't imagine what it must be like for you. Many times I feel like a complete burden to my husband and family and feel I owe apologies quite frequently for being "a bother". Of course no one else sees it this way...But for me (and probably you) it's hard not to feel that way. I really find it frustrating that I can't take my daughter places. I had her enrolled in a music for toddlers class but now I can't take her because i've not been able to drive for the last 3 months (my last seizure was in march) I go to see my neurologist next friday and am hoping that he says I only have to wait 6 months before I can drive rather than a year.
I'm trying in my head to find the words that express my frustration but there aren't any. Do you feel the same way?
As for advise, all I can do is tell you how I cope. I take 1 day at a time and try to find positives to focus on (although some days they feel pretty scarse). I walk a lot more now that the weather is nice. The hardest part has been coming to terms will all of this and accepting it. Although i've been dealing with this for 10 years, it has only been recently that i've been able to talk about it. That is the other thing you should do, is try to be open about your feelings and talk about them. No doubt it's hard and others cannot completley understand no matter how much they want to. I wish I could tell you one thing that would make it all better for you, but I can't. Just try to tell yourself that you are a valuable person and what doesn't kill us only makes us stronger, as the saying goes.
Good luck and keep in touch.
I hope i've been of some support to you,
kathy
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replied June 10th, 2004
Thanks For the Reply, Kathy! :)
I know exactly what you mean! Everything you said just sort of summed up what i've been feeling. I'm constantly apologizing to my husband (who is the only person I know and can rely on where we live), but i'm lucky that he's so supportive. I'm so sorry to hear that you aren't able to take your daughter out. That, too, is one of my big fears. We're planning on having kids in a few years, but i'm so afraid of all the restrictions, and all the complications that could possibly occur. Last night, right after I went to bed, I just cried. I woke my husband up because I was sobbing so hard, but everything just became so overwhelming. He reassured me and said he wouldn't let anything happen to me, but at the same time i'm laying there thinking..."you don't know that, because you don't know what's going to happen or what i'm going through". And now with driving restrictions, I feel like a rat in a cage. Do they really restrict you from driving for a year?? But if you only have them every 18 months or so, that doesn't make any sense? I hope your neuro allows you to drive sooner! I've been unable to drive for only 5 days now & i'm going crazy. My neuro only restricted me for 90 days, but still, it's like eternity. It's not that I ever really went anywhere, but now I don't even have the option. It's almost like i'm in this impenetrable bubble....No matter what I do, I can't get out, and nobody can get in. I eat right (mainly because of my hypoglycemia so I don't have much of an option there) I sleep....Well....All the time now, but it seems like the minute I slip up just once, this happens. I've tried to pinpoint the cause, but it's impossible, isn't it? I keep thinking it's some medication I took years ago, or the time I rode a roller coaster and had a good time, I just don't know anymore. I try to stay busy, but I get so anxious and bored. I knit, and I draw/paint, but I feel like i'm just being lazy if I do that all day. Does that make sense? I'm just venting now, so i'm sorry! But this forum is so awesome, just because it gives people the opportunity to connect with others going through the same thing. And even though I just joined, I know it's going to help and fill in that space where others around me are helpless (as far as understanding). Just knowing there are people here who care enough to respond is good enough for me. Smile so thank you, kathy! I do wish you the best, and I hope you are able to enjoy some time out with your daughter soon!!

Thanks again,
jueleah
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replied June 10th, 2004
Experienced User
Me Again
Hi again,
i live in nova scotia and generally the rule here is 1 year of being seizure free before driving again. Also, my neuro has been in touch with the dept. Of motor vehicles as in order to drive again I need approval. It really sucks. I'm so afraid that sometime it's going to come back saying no I can't drive!! At least right now I have some hope. When I was talking with my doctor's assistant she told me that when I saw them at this appointment it would be determined if I had to wait the full year or just 6 months (which I here is sometimes an option, but as of yet, hasn't been for me). One thing that really frustrates me is that it was just on oct. 31 last year that I got to drive again after not being able to for a year. Then, as I said before, I had a seizure in march and so all of a sudden couldn't drive again!
In my case it can't be determined what caused the petit mal in the first place or what caused it to develop into something worse. Personally, I think that something was put in a drink of mine one night when I was at a small party, because I wasn't there when the drink was prepared for me and it was the next day that the first seizure happened. But i'll never know.
I'm glad to hear that you and your husband want to have kids. It's the most wonderful thing in the world as far as i'm concerned! I too was really nervous about the whole thing, as I didn't know how my body would respond to all the changes. But i'm pleased to say that I have never felt as healthy as what I did when I was pregnant. If at some time you want to chat about that, let me know...I'd love to!
Take care,
kathy
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replied June 11th, 2004
Jueleh
Hi jueleh, I live I california and have been having gran mal seizures on and off (mostly off since lamictal) for 23 years. Like you mine didn't start until my 20's (26), one night I woke up in the er and same as you they are asking me what is your name (i couldn't answer for about 15 min.) I didn't know where I lived and I barely recognized my wife. When I saw a neurologist I had eeg's, cat scans, mri's believe me, the works. They could find no abnormalities. I was put on dilantin and my drivers liscence was revoked for one year. About a year and a half later I had another one, this time my Dr. Increased my dosage and included phenobarbatal. I didn't like that at all Sad . Any way, to get to the point I went around and around with this situation until I changed dr's. This Dr. Prescribed lamictal and I have been seizure free for years. Reguarding "auras" I can only describe mine as color perception changes, one felt like a strange memory I couldn't quite grasp, or a slightly nauseated feeling. These feelings didn't always result in a seizure but there was no mistake that they weren't normal. Now for the bright side (yes there is one) hey were alive! We still can live a good life, if you look at what's going on in the world we've got it pretty good in comparison. After years of being scared and unsure I just learned to look at the good things and live one day at a time. Don't be afraid to lean on those around you, those that really care for you (and you will find out who they are) are more than willing to provide support. Smile hang in there and never give up, life is wonderful! I hope that I didn't babble too much but I tried to put my experience in a nutshell (impossible). If you have any questions or just want to yak I will check this site dailey. This is the first time I have ever communicated with anyone else with the same disorder and it feels good. I just joined 6/10, I wish I would have done this years ago but hey, I just look forward. Raf good luck
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replied June 12th, 2004
Re: New (scared) Girl In Town
jueleah wrote:
i read about everyone talking about auras, but what exactly are they? I mean, I know they are tell tale signs, but what are they, & how can I hone in on them more? I'm just terrified of all that could possibly happen. This was only my 4th seizure ever, and there was a year & a half between my 1st & 2nd....Now I can't drive & I have to rely on my husband to take me everywhere. It wouldn't be bad if we lived close to family, but we just moved 3 months ago & that's when this all started happening.


as I understand it, auras are actually simple-partial seizures that precede a complex-partial or secondary generalized seizure-- and not everybody gets them. A secondary generalized seizure is simply a generalized (tonic-clonic/grand mal) seizure that is preceded by a simple-partial and/or complex partial seizure. That is, it doesn't begin as a generalized seizure but rather it progress from a partial seizure to a generalized seizure. Not everyone with complex-partial seizures has auras and not everyone with tonic-clonic seizures has auras either. I believe the latter are then referred to as primary generalized seizures. What I usually experience during an aura is what is known as an "epigastric rising." I get a funny feeling in my abdomen (my tummy) and it rises to my face. Sometimes the feeling also goes down as well-- all the way to my feet. It feels like a roller coaster ride. (that funny feeling you get in your stomach). I get butterflies in my stomach. Sometimes, I get scared, but my meds are pretty good at controlling the fear and that part of it is pretty mild anymore. Sometimes there is no fear at all-- just weird physical feelings.

This can make a big difference on how safe it might be in the future for you to drive because an aura can give a person a long warning period. Just the same, even with my auras, I don't drive. It's just not, in my opinion, worth the risk. Perhaps when i've really got them well under control-- and for a long period of time (probably even longer than is required by law), I will reconsider, but at this time, I would rather not take that chance with my life or with others'.




I know the feeling of being a burden on others. (it stinks). I also live far away from family and have to depend on people to take me places I "ought to be able to go on my own." (and i'm divorced with children). Very frustrating. I ride my bike a quite a bit but again, I have a warning period. A good friend of mine has complex-partial seizures only. (no aura). He has to be much more careful than I do. He doesn't ride a bike because the risks for him are too great.
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replied June 13th, 2004
Alice In Wonderland
Well Dr. Please go into more detail Rolling Eyes
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replied June 13th, 2004
Alice In Wonderland
Don't act like something that your not Laughing
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replied June 14th, 2004
Hi jueleah,
i've been having grand mals since I was 14, so I was never able to get my licence at all - my boyfriend let me try driving his car on a deserted road last year though, and it felt like a whole new world; I was so thrilled! I know exactly how you feel. When I first started having seizures, I thought there was something wrong with me and that my life was over. I was always forgetting to take my meds, and my parents were convinced that I could control the seizures if I would just remain calm, so I was made to feel rather freakish. I have the same guilty feeling when I go out with my friends and I never have to be the designated driver, or when my family makes arrangements to pick me up instead of having me take the bus over to visit them, but what I realized is that the people you care about and who care about you probably feel glad that they can come to your aid, and enjoy the opportunity to help, as opposed to considering you a burden. I find leaving out the appologies and really thanking them from the bottom of my heart makes the situation a lot less awkward. As for auras, I don't think i've ever had any; I used to twitch a lot before a seizure, and my arm would go numb, but I just took that as the onset before I blacked out. Now I only have seizures in my sleep, but i'm still waiting on the licence thing. The best advice I have for you is to think positively; instead of saying "i hope I don't have a seizure" say "i hope I continue to do well". Even if you do have seizures, embracing the learning experience instead of hating the discomfort or embarrassment will help you out. (i know it might sound hokey, but it does help) like someone else's response said, take it one day at a time, and never forget that you aren't alone
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replied June 14th, 2004
Thank You All....
I haven't responded to the last few posts on here, because i've just been reading everything & taking it all in. You are all so encouraging, and positive.....It really helps. :d so thank you!! I'm always having the "poor me's"....But then I read what everyone else is going through, and I realize that a) i'm not alone & b) a lot of people are much worse off than I am.....Although it doesn't help that I tend to be a very empathetic person, so I pretty much feel what everyone else is feeling. Laughing and I know i'll probably never know exactly why this happened to me, but it obviously happened for a reason. But, I go in for an eeg tomorrow.....It'll be my first......So i'm a little nervous, a little anxious....& very hopeful. Not too hopeful, because so far all of my tests have been normal...But ya never know.
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replied September 12th, 2010
Epilepsy & Pregnancy
Hi
I am in the process of planning a pregnancy. I have epilepsy. Please can those of you who have epeilepsy and have had children inform me of your experience. My deal is that i am afraid of my seisures getting worse, causing permament damage to my brain and just having seisures all the time....not being able ot earn a living....and the obvious harming hte baby. Please tell me your thoughts and experiences. My meds are Lamictal (lamotrogine) and Topimirate (topomax). I ahve had epilepsy since i was 8. Seisuyre types are Grand mal, absence, complex partial, myoclonic, photosensitive.....its controlled but occasionally i will have myoclonics if i dont manage my sleep. OVerall, my epielpsy awsomely controlled. However, I ahvent had a grand mal in just over 3 years. Help with advise....Soooo scared to get pregnant !

J
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replied September 12th, 2010
I have had epilepsy since I was 7 years old! I am now 40. I sometimes have aura's and other times I don't so never rely on them. I have been on eight different medications during the time and each have controlled me for a while but because of side effects or loss of control I have needed to change. I am a male so pregnancy was never an issue but talk to your consultant it should not stop you. I have lived life to the full just making sure I place safety precautions in place. Don't let the epilepsy control your life any more than you would if you had diabetes.
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