Hello everyone,

This is going to be kind of long so please stay with me! I need you all so much right now! I need a ralley of people who understand and can help me from "understanding" and not a text book summry.

I am so upset right now. I am crying as I write this (that isn't easy). I had 2 seizures night before last (Thurs. night) and one of them I had no idea about until my kids told me right before I went to work. I said that I was a little down from the seizure and appoligised for not talking much and they said, "Seizure? You mean 'seizureS'"! They told me what I did and said and then I went to bed. I remember going to bed but not missing any time. I felt worse then. I went to work and was having my 'mini' deja vu's all day. I debated about telling my new boss about the "E" but decided against it for now.

I left work and was driving home. I got less than one mile from my house and had a 5 second dream like state and then that was it. Not my usual extreme fear deja vu's that come before my seizres but just a mini dream like thing but I was still aware of what I was doing and everything. I reminded myself that I had to pick up dog food later and then that was the last I remember.

I came to on the side of the road but was still in my postictal state. I tried to drive the car so I could get home but it wouldn't move. I got out of the car and noticed that my left front fender was dented and scratched pretty bad. My front lisence plate was damaged and then on the passenger side I had a cement pole like thing under my car and the car was high-centered on it. I still didn't get it. It started coming to me that I had just had a seizure. I then started walking home. I didn't want to use the persons phone where I was parked because I was still a bit confused and didn't want to use a strangers phone in a strangers house when I didn't have my wits about me.

Half way home a cop pulls over on the side of the road in front of me and gets out. He comes jogging toward me and when he gets to me he askes me if I am ok. Not just a question but when he asked me he was VERY CONCERNED. It was genuine! (Go figure, right?) I immediately started crying and told him that I thought I had just passed out and my car was stuck. He put his arm around me and told me that some people reported an accident. Apparently I had made a wide turn and went off the road. I took out (ran over) two mail boxes. Not your ordinary mailboxes with the thin mettal pole but ones made from stucco and cement. They are THICK!! I didn't hit a person or an animal, but ran over two thick mailboxes.

He asked me about 'passing out' and I told him that I had epilepsy and I must of had a seizure. Next thing I knew there were ambulances and a fire truck there wanting to take me to the hospital but all I wanted was my CAR!! The called my husband and he came down. He wasn't even the slight bit mad at me and he still isn't. What a great guy!! The only reason that I am still driving is because my seizures are very routine. I get a 30 second deja vu accompanied by fear and then I know its coming. Its like clockwork...it never fails. It is ALWAYS the same thing over and over again. I won't be driving anymore!! NO WAY!!

I feel miserable. I need some friends right now....Thats YOU!!! Please don't think you have to solve anything I just need to hear from you all. I need words from people who travel my "E" road. I love you guys!! You are the best!!

God Bless you all,

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Leigh Ann
I'm so sorry, what a rotten break! You can take comfort in the fact that no one, including yourself was hurt, and who the hell cares about the mailboxes! http://www.healthboards.com/ubb/eek.gif
Your seizure pattern seems to be changing, and you need to talk to your neuro, I know you've been having med adjustments lately, apparently not for the better.
I too drive, as my seizure pattern is very predictable, very long visual aura. My last sz was the only one that broke the pattern, it occured in my sleep. Considering I don't drive in my sleep yet, that didn't concern me. http://www.healthboards.com/ubb/wink.gif
Will you still be able to get to your job? can someone give you a ride?
You should consider telling someone at work, if you have a sz at work, no doubt you will end up in an ER! I hate that, I remember when I had one at work years ago, I was still doing hospital nursing then. I had one on the floor I was working and hit the floor head first. My co-workers loaded me onto a gurney and took me down to the ER. I was so goofy after that one, had a concussion combined with a post-ictal state. http://www.healthboards.com/ubb/round.gif
My current employer knows, I told them if they send me to an ER I'll kill them when I get my act together again!
Hang in there girl, we all know it...
Teresa

is that our worse fear, being sent to ER. oh are they sick of us yet?? it doesnt seem that way because the ER nurses and doctors are so helpful and kind. but please dont send me to ER, just let me go home to my couch http://www.healthboards.com/ubb/smile.gif ((((((((((())))))))sounds like a very very scary time for you. being in a car accident and having a seizure. have you contacted your doctor about it yet? I am just sorry that you are going thru this. it would be cruel of your husband not to understand, it must be very scary for him too. you should not be held accountable at work if you have seizures. they can not hold that against you. please thnk about telling them, you dont want to freak them out if you have a seizure at work. do u wear a medical bracelet? lots of hugs and support. seizures suck big time, its not fair. good luck, and come back and tell us how you are feeling. (()))

Thank you Teresa and Violarose for your responce. I don't feel much better today. I think you are right when you say that my siezure pattern is changing. I didn't even know it could do that. Is that bad? Is it getting 'worse' so to speak? I don't feel like my normal self lately. My brain is doing funny things to me where sometimes I think I am literally loosing my mind. I had my aura lastnight and I knew for a fact that I would be going out. I told my husband and he was there with me but I never went out!! Strange!! I have never NOT gone out after an aura like that. I kept waiting for it and waiting for it but it never happened. This morning I woke up with this horrable feeling. I can't describe it really. It was like I had just 'popped' out of a seizure. I was confused and scared and worried. What is it like and how do you know you had a seizure while you are asleep? I have complex partials and I didn't think you would be able to tell if you had one while sleeping. Can you? If so, how do you know you have just had one??

Thank you for your concern ladies. You are so sweet! I wish we all lived close to eachother and then we could all get together and have brunch or coffee or tea at eachothers houses. That would be so nice to have people around you that have been there and are there all around you. My current friends just don't understand at all and it is nice when someone can relate to you. (Heavy sigh)

Anyway, I had better go. Keep writing and please let me know how you know about seizures while you are sleeping. Thank YOU!!

God Bless you all, ((((())))))

KittyMom (Leigh Ann)

Earlier this year I thought my seizure pattern was changing... started having more auras (mainly anxiety/panic type feelings) and more frequent deja vu, which scared me. I got a new neuro, had to adjust my dilantin level (i.e. increase). Took about a month for my body to fully accept the new level. I was spacy, and felt generally a bit odd.
If my memory is correct, you are recently diagnosed with epi? When I was first diagnosed I did not know what to think, or if I could go on as usual. No driving for a year, birth control issues with my dilantin, no drinking (even though I rarely drink). Aside from the issues I listed, I felt like total crap from 3 TCs in 1 day and getting used to the dilantin.
Perhaps you should take some time off from work (get a note from your Dr) just to regroup. Give yourself a break, you are going thru changes that nobody completely understands - especially the Drs who haven't actually experienced seizures.
This got long, but the point I was trying to make is that, seizure patterns can change. You can have complete control and then anything (or nothing) can trigger a change.
Good luck to you (and all)
Lainie

Reading your post was bringing tears to my eyes!! That is just how I feel, increased anxiety, panic feelings and a MAJOR increase in deja vus. I feel shakey and like "overall crap". I feel today as though everything is going to send me into deja vu and then seizure. Everything I look at or touch or hear gives me the feeling of potential deja vu. I hate this!! What you said describes me to a tee. This is so bizzar! I felt better with NO medication...he he. I have been on this Neurontin for about 2 weeks and it isn't doing anything but making me think they are getting worse and the med. is to blame. I feel as though I am going crazy.

I just started my job and today will be my 3rd day. They don't know about the "E" yet but I need to tell them today. I just hope that they don't freak and think that I have gran mals and I do that 6 times a day....people can be so ignorant. Wish me luck.

Thank you for your advise and your help. I do feel better when I talk to people that have gone thru it or are going thru it. I wish I had people here who I could call on the phone. I wouldn't trade you guys for the world but you never know how long it will be till you get a responce. You guys are the best!!
Thank you again and I look forward to hearing from you again soon.

God Bless, ((((()))))

KittyMom (Leigh Ann)

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

it makes sense that you would have anxiety, waiting for the next one. yuo really need a doctors help to get over this hump. it would be nice to see how you do on paxil or something to see if it would help your anxiety calm down. ((((()))))))))))))

Leigh Ann
Have you ever considered seeing a therapist to talk through some of this? Epilepsy is tough, however I've come to the conclusion that while I'm not lucky to have epilepsy, I'm a lucky epileptic. In so long as I take my phenobarb consistently I should never have another sz as I've never had one while on my meds. My last one was in my sleep, first time that ever happened. I woke suddenly and I immediately knew that I had had one. How did I know? My sz are ALL tonic clonic and I had the distinctive rapping headache, sore jaw and generalized sore muscles. I also had the foggy post-ictal feeling. I had had one of my auras that day, so I guess it was inevitable. My jaw was sore for over a week! That sz would have never happened if I had not cut my dose down. Needless to say, I'll never do it again. In the 19 years since I was diagnosed, I only had a sz when I cut my dose or quit it all together. Being a nurse, I can honestly say, there are worse conditions to have. I think after not having a sz for years, I start to think I don't have E anymore and I can quit or decrease my meds, NOT! The Phenobarbital just makes me tired and I get frustrated with it. I'm still debating seeing the neuro (first time in 19 years). The appointment is the end of July so I have time to decide. I'm wondering if it's better the devil you know, you know? If I try something else, maybe it won't work or the side effects would be worse. There's only so many meds for tonic clonic sz and I'm allergic to two of the major ones. I've ruled out Depakote,,I don't need to gain weight or lose hair! I'm heavier than I would like to be as it is and I don't have thick hair now! Nurses make the worst patients and I'm going to walk into this neuro with a list of meds I'll consider trying,,,I've narrowed it down to Lamictal, Topamax and Zonegran. We'll see, I may just stay on the Phenobarb...

Oh kittymom i am so sorry i haven't been here for you!! yes it is very scary to ha ve an accident when driving! I have a little confession, i was driving for quite awhile (please no lectures). my work scheadule begins at 3am and i have a 25 minute drive. one morning i woke on the side of the road with a sign under my car, i knew i had had a seizure. i was only five minutes away from work, but i was 23 minutes late. big time gap! but my co-workers already had our if lisa isn't here on time plan going!! my hubby had already been called, he had my parents on the way to sit with the kids, and our van was warming. at work they had someone stationed at the door to watch for me. stupid of me i realize now, but at the time very necessary. i'm off work until august right now so i'll see them how i am. sorry, didn't mean to make this about me, just wanted you to know some of us have had somewhat of the same experience!! its nice to know the officer was so nice!! how are you doing now???????

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Angels are real! When you need them most they come. My angel is my daughter who saved me from drowning in our bath tub. She's my hero and my life!

KittyMom,
I'm sorry that I haven't been here for you too. My last seizure happened when I was driving also. It is very scary and I haven't driven since. I'm so glad that your family is there for you. I agree with the other ladies, you need to take some time for yourself. Contact your Dr and get a note to stay home for awhile. That way you'll be around things that make you comfortable and not scared. It's so much easier for me to be around home and relaxed. Take care. http://www.healthboards.com/ubb/smile.gif

Hello Everyone,

Thank you for the advise about staying home for a while but you see, that is just the problem...I am home tooooooo much! I need to get out and do something so I am not home thinking about the miserable state I am in. (I don't mean Arizona either ha ha) Work is helping so far. It would help even more when I tell them about my "E". I am going to tell the "BIG BOSS" today. Wish me luck! I know I said before that I was going to do it but I called him yesterday and asked him if I could talk to him before the store opened today. Now I have no excuse. IF they knew what was happening to me I would feel more relaxed. I would just hate for them not to know and then I have one. I don't have gran mals but what I say while in my CPS can be pretty bad also. I just would rather they know so if they saw it they wouldn't send me to the loony bin! Cross your fingers!! I have a lot of explaining to do because most people think that seizures are the gran mal type and they don't want to be near it. I hope they understand. I don't see why not, my boss is the most easy going guy there is. He is so nice! When I first met him I felt like I could talk to him all day and tell him anything.

I did have 2 seizures in my sleep the other day and I go to the Neuro today so lets see what goes. I am going to start looking for an epileptologist. My seizure patterns changed over night and now I don't know what to think. I am so confused. I would know when because of the auras...I would have a general idea that they happen at night so I would stay in most times...I would never have one while sleeping...my auras were the same, time and time again. My "E" was very predictable and now it is not even remotely the same. I have auras but no seizures...the seizures come without the auras...I have them at any time of the day, and now in the middle of the night.

Anyway, I had better go! I am sorry to post so long again. Thank you guys for being the best group of people on the planet!! You are the best! I don't know what I would be doing without you guys!

God Bless each of you, ((((()))))

KittyMom
(Leigh Ann)

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hello,

Just an update...

I told my boss about the "E" and he said that it was no problem and if there is anything THEY can do for ME to just let him know. WOW!! Not what I expected!

I will be getting company from England tomorrow. My best friend that I met while stationd there with the military. They have family out here so they are stopping by. Talk to you all Friday!!

KittyMom

Hello Kitty
I read your post and thought i would answer sorry to hear bout your mishap where to begin ok i am 46 years old have had seizures since I was 14 So kind of a veteran most of mine come when i am asleep now that I am older The Aura that I have as time went on seemed to come more often but less actual siezures wich if I had a choice i would take that anyday.The Meds I am on are Dilantin and Trileptal the latter being the newest. another sort of weird thing was I found that If I ate chocolate for whatever reason the sizure potential was worse. I started keeping track of this and found it to be true. another thing was if I skipped meals or was real hungry had the Aura more often. if i grabbed some food it helped. I am not sayin that these things will give you comfort but its something ya could maybe give a try I know how and what ya feel as I have been there done that for a long time. I'll keep you in my prayers. to be sizure free. Cause for me that will be heaven on earth! May God Bless and keep you Safe. remember If he brings you to It he will bring you through It!
Doug

[This message has been edited by Doug2150 (edited 06-20-2003).]

Hello Kitty
I read your post and thought i would answer sorry to hear bout your mishap where to begin ok i am 46 years old have had seizures since I was 14 So kind of a veteran most of mine come when i am asleep now taht i am older The Aura that I have as time went on seemed to come more often but less actual siezures wich if i had a choice i would take that anyday.The MEds i am on are Dilantin and Trileptal the latter being the newest. another sort of weird thing was i found that if I ate chocolate for whatever reason the sizure potential was worse. I started keeping track of this and found it to be true. another thing was if i skipped meals or was real hungry had the Aura more often. if i grabbed some food it helped. I am not sayin that these things will give you comfort but its something ya could maybe give a try I know how and what ya feel as i have been there done that for a long time. I'll keep you in my prayers. to be sizure free. Cause for me that will be heaven on earth! May God Bless and keep you Safe. remember if he brings you to it he will bring you through it!
Doug

Hello Kitty!

You don't know me - I'm brand new to the healthboards, but I have tears in my eyes after reading your posts. I know how you are feeling!!! I've been there! I started a new job on Monday, my dream job, and yesterday, (Friday) I had a seizure at work, with all the groaning, salivating, trying to talk, trying to not make it happen. etc. I got the "Fear Deja Vu this is geting worse" feeling - knew I was going to have a seizure and ran in to my supervisors office. I had just enough time to say "There's something I didn't tell you.. I have epilepsy, and I'm going to have a seizure.." and I did. Right there in front of her, the new hire is having a seizure. It was horrilbe. And I stayed at work the rest of the day. Then today, I read your post - and I just feel so much empathy for you! I feel your pain... it just IT SUCKS to have epilepsy. I've NEVER had a seizure at work before, ever, in my whole life. And now this. My boss acted completely sympathetic, and was very kind and supportive, (and didn't call 911, thank God!). While I was still recovering from the sz she started telling me about her migraines that she gets, and how one time she started to choke and ran into the ladies room and nearly passed out in there, because she was with her "soon to be" husband, and she was embarassd to have him see her nearly choking to death. (I can't believe I even remembr what she said, but sometimes, when people talk to me while I'm having a sz, I have no recall of what I was doing, or saying, but I remember every single thing they did, and every word they said.) So, I've learned in this, that if you do tell your Boss, (Which you said you might do...) they might actually care and understand that it isn't something that you can control. But the thing is, WE (epileptics) I think, try to do MORE than our other co-workers, or anyone else, to prove that we CAN do it, and not let the epilepsy get in the way.

You mentioned that you get "mini-auras" or "Mini-deja vu's" what does that feel like? Are those like pre-warning, warnings????

Looks like you have a lot of supporters on this board... and now, I'm one of them. http://www.healthboards.com/ubb/smile.gif

[This message has been edited by Wheelsinmotion (edited 06-21-2003).]

Each and every letter I read has brought me to tears. I have been on dilantin in addition to neurontin for approx 17months. My dilantin level cannot be stabilized, so I either have a seizure when my level is low, or I walk into walls, and have mass confusion when my level is too high. My seizures have been occuring in a very unpredictable pattern. My last seizure had me totalled bonkers for hours on end.

I hate to sound naive, but due to my brain injury my memory of statements and their meaning are jumbled for me. Could someone please explain this deja vu thing to me.
Oh Thank you, thank you thank you

Marcia http://www.healthboards.com/ubb/wave.gif

Wheelsinmotion,

I just read your post and I to know how that feels. I haven't had one at work but I did have one in a job interview. I was talking to the interviewer and I started my FEAR DEJA VOU. I started sweating and she thought that I was nervous. I laughed and said that I was nervous and the next thing I knew I was in the parking lot getting into my car. I have no idea to this day what I said to her or what she said to me. I think that after it was all done that she thought I was on drugs. I go out but I don't know what I am saying or doing. I have Complex Partials along with Simple Partials. My aura feelings are my Deja Vus. That is the warning to my seizures. I get the Deja Vu and then I know I am going out in no time. The "mini deja vu" is when I have the deja vu but it is not accompanied by the horrific fear. I am scared but not horrified! You have the deja vus also?? When you have them, do you remember what it was about? Can you describe it to someone?? I can't and I wounder if that is normal??

OH MY GOSH!! Where are my manners?? Welcome to the board! There are so many nice people here. We are getting so many new ones day after day. I hate that there are so many people with "E" but I like to see the gathering of everyone. It is comforting! I can tell just by reading your post that we do have a lot in common. My new job is not my dream job but it is the first job after having been diagnosed with "E". I did tell them by the way http://www.healthboards.com/ubb/smile.gif They were very understanding and asked what THEY could do for ME!! I was shocked. I still think that they look at me differently now. Maybe that is all in MY mind! They probably don't but I am sure I will get over it. I haven't had one at work but I did think that today was the day. It didn't happen!!!! YAY!! I am sure one day it will though.

How long have you had your seizures? Mine has been for about 1 year with the PC and 6 months with the CP. Before I went to the doc I thought I was going crazy. I thought seizures and "E" ment that you had the gran mal type. I was ignorant to the rest of them. When I went to the ER after the job interview I thought they were going to get the straight jacket and put me away. What did you think?

I have a feeling we are going to get along just fine. You seem like my kinda gal...he he. Please write again!! Soon!!

God Bless you,
KittyMom
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Mleah,

So nice to hear from you again! A deja vu is the feeling that you have been, seen, heard and done the particular thing that you are doing at that time but you did it in the past sometime. So, what you are seeing and hearing is EXACTLY what you saw and heard in the past sometime. You can almost predict what is going to happen but then it goes away. These type of deja vus that I have before a seizure are slightly different than that but just like that at the same time.....SORRY TO CONFUSE YOU!! They are different and HORRIFYING!! I am so scared during them. I used to be crying and praying to God begging Him to take this feeling from me. It was terrible....heck, it IS terrible.

Does this make sense to you?? Let me know. I am not good at describing things. Sorry!

How are you doing lately?

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi KittyMom,

Thank you for clarification. The last seizure I had in May, all I remember is standing, then feeling the need to lean on something, then putting my head down. When I awoke there were paramedics everywhere.....I had a lump on the back of my head the size of a baseball, and I was not in the room I started in. I was aphasic for about two hours....I wasn't able to walk for about 3 hours......anyway, this whole thing is the pits.

I have seizure disorder since January of 2002 (I was in a near fatal car accident), so this is really new for me too......For the first 7 to 8 months after the accident I have no memory of the accident on, it's only the past 4 or 5 months that I have begun to realize that I do have seizure disorder, and I hate IT!

It's so nice to meet you too http://www.healthboards.com/ubb/smile.gif.

Tomorrow it's off the Dr..........YIPEE!!!!!!!!!!!

http://www.healthboards.com/ubb/rolleyes.gif

Marcia

Hi KittyMom!

Thanks for your reply. http://www.healthboards.com/ubb/smile.gif I'm so glad to hear that it went so well when you told your new Boss about the "E". And they asked if there is anything they can do for you? That's awesome. For me, I'm dreading going in to work tomorrow, after having a seizure at work on Friday. But as I'm reading your e-mail, it makes me feel better knowing there really ARE people who are going thru all the same things that I am going thru with this - I'm not "Alone" and that there really are compassionate bosses out there too! I'm just so embarassed. But I'm going to go in tomorrow and do my job - and do it well, and try to get past Friday.

I've had Deja Vu's for as long as I can remember, but I didn't know what they were, or that it wasn't "normal" until one day when I was about 22, I was reading the Dear Doctor column in Cosmo. Magazine. A woman had written in, describing her deja vu, and aking what it could be. The response was GO TO A NEUROLOGIST... SOUNDS LIKE EPILEPSY. So, since she was descrbing my exact symptoms, I too went to a Neuro and had a sleep-deprived eeg where it showed that I was having a sz. every 30 seconds. (I was exhausted all the time, but didn't know why.) I was put on Tegretol, which was great, but my liver didn't handle it well, so I had to go off that... and very long story short - (I'm 41 now..) I went in to my neuro a few weeks ago with a big ziploc baggie full of ALL of the meds I have tried. Topamax, felbatol, mysoline, dilantin, Klonopin, Neurontin, etc., and I demanded Ativan and Diamox. That combo works for me, even though it's old, and simple. My doc said no at first, because Ativan is adictive, but I said So What... I'm going to be on meds my whole life anyway... so finally he gave a script for both. And, I was doing fine, until Friday. I Forgot to take my medcine in the morning, I was very tired, hadn't slept - new job, new hours - and ... (DOUG 2150 are you there??)I had a whole bunch of Mrs. Richardson's chocolate sauce the night before. Sometimes I don't have the ice cream, I just have a spoonful of the chocolate sauce. That way, I get the chocolate rush - but without all the calories. And, I had a lot of sugar during the week. Could it be chocolate? Cold it be sugar? Do you find that you have problems when you eat sugar or chocolate?

I think I get the mini-deja vu's that you were describing. I'll be going along, walking, or typing, and suddenly have a "flash" of a memory of a dream that I had. (I don't know if I really even had the dream... it just feels like I did. It's very strange.) But that's all I get with those. It just goes away real quick. When I have a full Deja Vu, I'll be doing something - like typing, or reaing, or walking, or even just gardening. All of a sudden I'll get this feeling, like a warning. It's not a voice or anything, it's a feeling, like my body is feeling that I should have known this was going to happen, and I get very scared, and I think whatever "it" is, it's getting worse, and I think I have a brain tumor and it's going to get worse, and I get this "I've been here before, I should have known, it's getting worse" feelng. Sometimes, that's all I get. But in the last year, it's not stopped there - it goes into a seizure where my right arm starts shaking, and I start groaning, and salivating, and then it stops. A few times I've passed out, and other times it's like the left side of my body is awake for the whole thing, just watching the right side of my body but not being able to do anything about it. Afterwards, I am very tired, and have a very bad headache for about two days. It's horrible. My Neuro said that what I describe is very typical, and that you think it's going to get worse, but it's not. That it's just centered in the "Fear" part of the brain, and all that activity going on in there is what causes the feelings of fear, but it's not "real". It's part of the seizure. And then - when I'm back to normal, you'd never know anything was ever even wrong with me. I'm fine. I appear to be happy, and very healty. It's hard on my relationships though. I get really tired. Do you have days where it just makes you super tired??

I love this message board. I'm sorry we all have "e" but it's great to have this tool to learn more, and talk to each other.

B.t.w - I tried Topamax. I liked it a first, a lot. But it just trashed my memory, and my word finding. How are you doing on Neurontin??

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WIM

After reading Kitty's and WIM's posts I got a grin, I am a boss with Epilepsy! isn't that a hoot! Not everyone out there is an idiot.
I have something I have to share. A few weeks ago, the nursing home where I'm director had a resident who was dying of a terminal illness. This resident's son who is an untreated schizophrenic had been coming in to visit regularly and had presented no problems. However, when his mother was dying I think it was more than he could cope with. He came up to the desk and made some threatening remarks, my staff was watching me closely to see how I responded, as I think it was scaring them. I spoke very calmly to him and he left, saying he would be back later. Of course I had to be careful, I have other patients and staff to worry about. I had to call the police and have them talk to him and I temporarily kept our doors locked. I also spoke to his family who were completely supportive. To make a long story short, she died not long after and the next day the family was in to collect their mother's things. Her other son took me aside and apologized for his brother's behavior. I was incredulous, I told him, "if he had diabetes, would you apologize if he had an insulin reaction?, "if he had epilepsy would you apologize if he had a seizure?"
"Would you apologize if he had an asthma attack?, he had untreated schizophrenia, it's a disease."
The point is, epilepsy is also a disease, there is no reason in the world to feel badly or inferior about it. WIM, you go to work, do your job and carry on! Look at this way, you broke them in now anyway!
Good Luck
Teresa

WIM,

I am so glad to hear from you again. I got your post and just wanted to read and read and read. I didn’t want it to end. What you said describes me perfectly. I have the same “dream like” feelings that you have. Those are new though. The first one I got was right before my car accident. I didn’t know what it was so I gave up on trying to figure out what it was and why I had it. I thought that it was a real dream I had but didn’t remember ever having it. Right then I went “out” and the rest is history. I feel the same things that you described except when I have my seizures. Yours are different but everything else is the same. What are your seizures called? Mine are Complex Partial but I don’t remember what yours are called.

About the sugar and chocolate on setting your seizures, I have no idea. The doc told me to document everything that I eat and we will see if it is a certain type of food or ingredient in a food that starts my seizures. I don’t think it is but I will document it anyway. I think mine are caused by stress and lack of sleep although I did have a lot of sugar yesterday. I had a seizure last night but I had an unusual amount of sugar and I was a walking zombie by 3:00 pm because I was so tired. I can’t figure it out!!!

I hope you had a good day at work. Teresa was right in the last post when she said that you have to think of it as you just broke them in. They have no surprises now. I do know that you must be nervous nonetheless but I have a feeling it will all be good. Keep your chin up. I always feel very strange the day after a seizure. Today I have to go and tell them that I had one last night so my concentration and understanding is going to be a little off today. Great!!

I have a question for you. Do you ever remember what your “dream flash” was when it is over? Can you remember what your déjà vu’s are about and what was scarry when it is all over? I can’t remember anything about mine at all. The only one I remember was the one before the accident. All I remember was that it was about my kids. That’s it!! Is this normal?? Who knows what normal is anymore!?

Neurontin is working very well for me. The tired thing is normal for all meds but I don’t feel like someone replaced me with a serial killer. I was doing very badly on Keppra and Tegratol. This one seems to be doing its thing. Lets hope the seizure was just from being so tired. I WANT TO DRIVE AGAIN!!

Please let me know how work went for you today. I am going to be thinking about you all day! Keep writing, I enjoy your company! I’ll check in later after work!

God Bless,
KittyMom


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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi guys its me again Mleah was askin bout the Sugar or Chocolate I think for me its the Chocolate but can be both I'm not a big sugar eater but always was a chocolate freak I am not sayin its a cure but try it and see pay close attention see if it helps about Auras In my 32 years of havin this curse I have kinda learned when that happens and i know it may sound tough but I try to calm down and not have this omg everone will know or see me attitude seems that helps I concentrate on me and not if i am gonna have an audience keep me posted guys let me know if this helps
cause t o help somebody cope with this would make my day!!!!!!!!!!!!!!!!!!!!

Hi guys its me again Mleah was askin bout the Sugar or Chocolate I think for me its the Chocolate but can be both I'm not a big sugar eater but always was a chocolate freak I am not sayin its a cure but try it and see pay close attention see if it helps about Auras In my 32 years of havin this curse I have kinda learned when that happens and i know it may sound tough but I try to calm down and not have this omg everone will know or see me attitude seems that helps I concentrate on me and not if i am gonna have an audience keep me posted guys let me know if this helps
cause t o help somebody cope with this would make my day!!!!!!!!!!!!!!!!!!!!

To each and all,

Today I am going to the Neurologist to request that I be placed into a hospital. My request is for them to withdraw me from all the meds I am currently on, while being monitored, then begin to introduce meds that will assist me in not having seizures, or outlandish behaviors!

I can no longer tolerate these horrendous symptoms and firmly believe there are other options out there to help me and others.I know I was not like this prior to my accident.

Please just for one moment throw me some positive energy, not necessarily online, even in thought .

Thank you........Marcia

Marcia
I have often wanted to do that in the past never could find anyone who would do it keep me posted all thepositive energy i have is yours!!!!!!!!!!

hi marcia,
your situation is similar to mine: although i became epileptic in oct. 2001, six years after the nearly fatal car accident and two week coma. What drugs do you think don't have side effects? what has your doctor suggested??
I'm getting so da++ sick of the side effects that im about to go off the meds on my own... but i know its not a good idea! What is one supposed to do??

In response to the sugar /chocolate questions... when I was first diagnosed (10 years ago)I was convinced it was a blood sugar related problem - it was Easter when my first known grans mal hit - 3 in 1 day. So anyway I mentioned this to my neuro and he was all for having glucose tolerance testing. Unluckily for me, that came out normal and I am stuck on meds.
But, the reason for my testing was that I read where low blood sugar can cause seizures. You never know, it could be.

Marcia and cbb,

Marcia, I am giving you all the positive energy I can muster up. Its YOURS!! Good luck. Let us know what the doc says! http://www.healthboards.com/ubb/smile.gif

cbb,

Where have you been?? I haven't heard from you in so long. I am sorry that the meds are driving you out of you da++ mind! Are you still on Keppra?? If so, you should consider getting off. If they are that troublesome let your neuro know. I am on Neurontin and it is great. Just a little sleepy is the only side effect. HOLY COW ITS GREAT TO SEE YOU ON HERE AGAIN!!!

Where is WIM??? I have to know how she did at work yesterday!? WIM??? WHERE ARE YOU???? I HAVE A STORY FOR YOU!!!

God Bless you all,
KittyMom http://www.healthboards.com/ubb/angel.gif

Hey Kitty,
I'm glad to hear from you, I am getting so sick of the whole thing that I guess it makes me really sad to read other peoples stories and I stop checking into the site as much...
Sometimes I get this feeling that if I just stop the meds and start doing yoga that everything will get better on its own. But at the same time, I know that's probably not true, all considering.
And I keep getting all of these "feminine problems" that wont go away, that's driving me even crazier. (That's been going on for about four months now).
Have you had any recent szrs?? What side effects does neurontin have?
Oh well, I'm glad you're doing okay.
Take care,
C

cbb,

What sort of problems female wise?? You don't have to say!! Sorry!! Have you seen a GYN about it?? If not you should! You probably know that already but I hate it when people suffer. http://www.healthboards.com/ubb/frown.gif

Neurontin has been a life saver. The only side effects is the dizzy and lack of coordination the first week or two but then after that it is a dream!! It is the most "natural" medication that there is for "E". It is used for other things also. Pain management and such but it is none addictive. Like I care, I will be on it for the rest of my life anyway. I think it is the best! After the Keppra, having 20 seizures a day would be good....ha ha. Just kidding. All kidding aside, I really like it. If you have CPS or SPS then you should inquire. Not to say it will work for you because I am not a doctor but I remember the horror of Keppra and what it will do to you. It will waste away your mind until you think that what you are feeling is normal and this is how you will be for the rest of your life. NOT GOOD!

I have had one seizure in ten days. He increased my medication and since day one on the increase I have had only one seizure. I did have a little (BIG) thing happen yesterday at work but that will be in a different post that I will title "Emergency". I need some help and experience for what I had happen to me yesterday. How are your seizures?

Don't stop checking in! I missed you! I thought something bad happend to you. I am glad you are ok. Sounds like depression to me..... http://www.healthboards.com/ubb/frown.gif Poor thing!

Write me again soon! I miss you! Tell me all about what is going on with you!

God Bless you,
KittyMom

To all my wonderful friends,
First and foremost thank you for your positive thoughts.
Last night I returned home from a three day stay at the hospital. I was very heavily sedated in hopes of keeping my brain waves quiet. They are currently keeping me on Dilantin. wWile in the hospital they stated me on Zonegran. It doesn't seem to be doing much but make me enormously drowsy, so again today I go cak to the Neuro and he will be starting me on Trileptal.

Sometimes I wonder whether I would be better off without all these drugs!

I'll let you all know later what the Doc has to say''

Marcia

To all my wonderful friends,
First and foremost thank you for your positive thoughts.
Last night I returned home from a three day stay at the hospital. I was very heavily sedated in hopes of keeping my brain waves quiet. They are currently keeping me on Dilantin. wWile in the hospital they stated me on Zonegran. It doesn't seem to be doing much but make me enormously drowsy, so again today I go cak to the Neuro and he will be starting me on Trileptal.

Sometimes I wonder whether I would be better off without all these drugs!

I'll let you all know later what the Doc has to say''

Marcia

To all my wonderful friends,
First and foremost thank you for your positive thoughts.
Last night I returned home from a three day stay at the hospital. I was very heavily sedated in hopes of keeping my brain waves quiet. They are currently keeping me on Dilantin. wWile in the hospital they stated me on Zonegran. It doesn't seem to be doing much but make me enormously drowsy, so again today I go cak to the Neuro and he will be starting me on Trileptal.

Sometimes I wonder whether I would be better off without all these drugs!

I'll let you all know later what the Doc has to say''

Marcia

hi kitty
female wise: bacterial and yeast infections repeatedly, sex is less pleasurable even when i have those under control for a while. Yes, Ive talked to a few gyns and have used five different perscription medications, but they seem to keep coming back...
It seems like i have control over it now, and I'll see...
Luckily my boyfriend is EXTREMELY understanding, and a wonderful, caring, affectionate man. (He is a social worker professionaly, I wonder if that has something to do with it!!? ha ha ha).
talk to you soon,
c