Epilepsy - My new "reality"

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Epilepsy - My new "reality"

Postby Synne » Mon Jun 18, 2001 2:21 am

I had to decide whether or not I wanted to write this message... but I decided to because I have to deal with this and I wouldn't mind finding other people who have some wisdom to share on the topic.

For a while now I had been having these intense deja vu kind of feelings that got me kind of dizzy and nauseous... they would just come and go every now and then and I didn't really know what they were but kind of thought they were something spiritual and they really intrigued me...

Then one Saturday afternoon on June 2nd, I was sitting by computer doing stuff online, had just sat down with a cup of coffee… about an hour/hour and a half later, woke up lying on the bed with sore leg/arm muscles, bitten tongue and broken blood vessels on my forehead. I had no clue how I got into bed or what had happened and my cup of coffee was still sitting next to my computer, and everything was still opened just the way I had left it. I thought it was some weird allergic reaction or something… but that didn’t really make sense.

Then Friday, June 8th, I was sitting at a palliative care conference for work at the VA Hospital... and I remember having that deja vu feeling and then nothing... I found out later that I had a SEIZURE right there in the middle of the conference... they took me to the emergency room where I had ANOTHER one a little bit later... after dilantin and valium, a CT scan and blood tests and crap they admitted me to the New York University Epilepsy Center where I stayed for the next 6 days hooked up to an EEG monitor, under the watchful eye of a video camera. (they even tried to get me to have another seizure so they could video tape it by flashing a strobe light in my face for several minutes - joy)

So... now I'm home... with a diagnosis of "Right Temporal Lobe Epilepsy", on Tegretol and dealing with what this new reality means for me... I've got a bunch of new fears like: am I ever going to have another seizure? When/where will it happen? Will it be worse than the ones I've already had? Will I freak out when I'm alone? What kind of side effects will the medication have on me? Will I be able to drink? Will I be able to have kids safely? Without birth defects from the medication or problems from seizures? Will people at work treat me differently? (So far they've been amazing and very supportive)

I don't know... it's just a lot for me to deal with right now... I have an amazing support system (my fiance, my family, my friends, people at work, the epilepsy center) but this is just so new and so out of left field... it's a lot to grasp.
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Postby Lizzie » Mon Jun 18, 2001 3:45 am

Synne: I have no particular wisdom but I have been there from both sides. I had a three year period where I had seizures but 15 years later and no meds I am fine. It was awful when it was happening but I found that trusting people and bringing them up to date on my health really helped. Most were cool and the few who were not I did not need anyway. Follow your doctor's instructions and make sure that you trust them. Get lots of rest and try to eat properly. Teach your family and friends about your condition and allow them to help you with it. Denial is a bad way to go. Get a medic alert bracelet. As a teacher of challenged kids I see a fair number of seizures. I just take care of the child and love them and let them sleep it off. Teach people how to take care of you. If you want to talk more I would be happy to listen. Take care and hang in!
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Postby Synne » Mon Jun 18, 2001 3:54 am

Thanks Lizzie,

Were you on medication? How did you go off? I mean, how was the decision made? Did you have a medic alert bracelet? I'm going back and forth with that... they're pretty ugly.

I teach medically fragile/developmentally delayed kids, many of whom have seizures... its not a fun thing to watch. I keep joking with the people I work with that its contagious! <img src=pix/silly.gif border=0 align=middle>

I guess I'm dealing with it right now by just telling everyone and kind of owning up to it...
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Postby Lizzie » Mon Jun 18, 2001 4:55 am

Synne: Whoa this is still difficult isn't it. Yes dilatin for two years and no seizures and then a bunch of tests that said my brain activity was back to "normal" for me. And 6 months to get off the stuff. Bracelet necessary but hated. We have the same job just about.
I'll look back again.
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Postby Lizzie » Mon Jun 18, 2001 8:06 pm

Synne: nice meeting you last evening..short though it was.

My reality these days is also a little harsh..life always remains a challenge. I have had a case of shingles that seemed very minor the first few weeks. A small rash that was gone within 8 days and pain that I was more or less able to handle. Now the pain is pretty much like having a hot iron against my skin and has been very intense for .....today is the start of week 17. I am now on a medication for depression because until very recently I was only managing to sleep for 2-43 hours a night. I lost so much weight that my doctor makes me get on the scale every week to prove I am eating.
Figured that if you were going to put your reality out here then maybe you'd like some company. Let's hold hands and let the universe know that we are survivors and hell we are even going to have a good time!
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Postby Lizzie » Mon Jun 18, 2001 8:08 pm

can't type or proof-read it seems..2-3 hours is what I meant.
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Postby Synne » Tue Jun 19, 2001 12:01 am

Lizzie,

It was nice meeting you... wish we had some more time to talk.

I'm sorry you're going through all of that pain. Is the medication helping you emotionally? Did they give you anything for your physical pain?

<<<very gentle but warm hug>>><img src=pix/icon_smile.gif border=0 align=middle>
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Postby Lizzie » Tue Jun 19, 2001 12:41 am

Nope they can't seem to get me something that works without doping me..which just not work if you are caring for someone's children. I must have a clear head. I think I may try something in two weeks when school is out. The meds may be helping as I am up 4 lbs and am sleeping for closer to 6 hours which is normal for me. I still managed a lovely tailspin this morning and managed to fling **** at nearly everyone I love so far..and it only 12:30pm here.
Sorry we were talking about you and I really do not need any more attention. Btw you can get necklaces now that you can wear under your clothes. Medical personnel know to look for this stuff and though still ugly it is not as visible. Let me know what you decide. I wonder if anyone else here has ever had a seizure?

<hr>I always keep my promises, she said
      Except when I don’t
And I promise to love you forever

Fortunately, I understood exactly
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Postby Synne » Mon Jun 25, 2001 11:47 pm

Lizzie,

I realized I forgot again that you cant put anything in the middle of <>'s or it doesn't come out... In my last message I wrote something like "delicate hugs" in the middle of my <<<>>> and then the smile... but it didn't come out in the message, thats why the smiley face looks out of place! :-I

But anyway... There's got to be something you can take that will relieve your pain but not cause tons of unwanted side effects. I hope you find something to help you.

I'm starting to feel a little better/the side effects of the tegretol seem to be decreasing... my eyes are still really sensitive to light(I was seriously wearing sunglasses last night to use the computer!)and a little blurry on and off and I get these few second dizzy feelings here and there which freak me out because I dont know if its some little seizure thing, from the medicine, from being tired or just my own wackiness :-I But the other night I had 3 of these dizzy "feelings" in a row... and my eyes hurt so I looked in the mirror and my pupils were SO dilated... which freaked me out a lot.

Bleh.

I so don't want to get a medic-alert bracelet... they should make anklets... that I'd wear.
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Postby Lizzie » Tue Jun 26, 2001 5:36 pm

Synne: I wish you would re-consider the med-alert necklace. These things do speak for you, but, I will not bring it up again, promise. It takes a while to get the right dose of meds into your system. Most people get relief and a measure of control from them after a while, keep nudging your doc. until you feel normal. Did you know you can buy sunglasses that wrap around and cover light fonm the sides as well..in different degrees of light control? I used to have a pair that I used specifically indoors. Outside baseball caps help too, or anything with a wide brim.

my pain was not the point..(and I do have a line on something new that I am seeing my doctor about next week.)
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Postby YDOG22000 » Wed Jun 27, 2001 9:52 am

hi guys. wish i had more to offer here than empathy. Synne, you might check out computer monitor shade screens as well. i could be wrong, but monitors can have a strobe like pulse that is slightly too fast to see. dim down the brightness control. I worked with the dd population for 12 years. still do at times.
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Postby Synne » Wed Jun 27, 2001 10:13 am

Thanks ydog,

I swear I see the screen refreshing but my fiance says he doesnt see it... Im gonna get him to see if he can make it faster when he gets a chance or do something.
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Postby Lizzie » Wed Jun 27, 2001 5:28 pm

Synne: I am so sorry. The obvious escaped me. I have a monitor screen and would not dream of using a computer without one. The kids in my class have to ask to use the computer and I individually adjust the brightness on the monitor for my kids who seizure.

Ydog: my board of ed waffles between dh (developmentally handicapped)and dc -challenged. I hate all these terms. I think the damn labels interfere with teaching the kid; so many people come into my class an say things like she'a Down's or he's autistic like it's the answer to something. Sorry I am not going off on you..it's the last day of school with my kids and I am so damn sad....
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Postby Synne » Thu Jun 28, 2001 2:28 am

I'll look into get a monitor screen... see if that helps me.

Lizzie, it's the last day of school and youre SAD? I WISH I had the summer off... as much as I love my kids, I wouldn't mind a couple of months away from them!

I hate all the silly labels too... I'm a huge advocate for inclusion but inclusion in its most perfect state is a long way away... especially in public schools... plus our society loves to label everyone and everything... so we have to deal with that as well.
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Postby Lizzie » Thu Jun 28, 2001 9:25 am

My kids are gone and tomorrow I just clean up. It is so hard for my kids to understand. Today I said a special goodbye to each child and gave each of them a kiss on each cheek. Mark walked out the door but soon returned, he put his arms around my neck and whispered "It's okay, I come back and play with you tomorrow." Now I do not know about you, but, I cried my heart out at just how sweet and loving that little guy is. I will go two months without seeing them..and so as much as I love summer vacation, I am sad indeed.
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Postby Synne » Thu Jun 28, 2001 11:45 am

Lizzie,

Okay, I can totally understand that... My kids are are profoundly developmentally delayed (there go those labels again)and nonverbal so there's a lot of stuff I dont deal with...

<<>>
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Postby Lizzie » Thu Jun 28, 2001 5:32 pm

I had a very high-functioning group. Mark had maybe 20 words last June, this year he has over 400 and can read most of them. My classroom has been a magic place and I doubt that I will ever experience quite this degree of sucess again. Sigh..today I dismantle it and can only hope to be able to put it back together for next September..

<hr>I always keep my promises, she said
      Except when I don’t
And I promise to love you forever

Fortunately, I understood exactly
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Postby YDOG22000 » Fri Jun 29, 2001 8:35 am

Wasn't much, but what I had to offer. Agree with you guys about the labels, unfortunately, funding and reimbursement is generally tied to diagnosis and not functional level (which can be labels too). Oh, and a hug synne. not to forget that. sounds like you've got some good support as well as being a good person. I loved that you could laugh about the contagious aspect. You must be very smart to have such insight mixed with humor!
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Postby Lythande » Fri Jun 29, 2001 8:49 am

Dana,

Oh, boy. I'm a rotten person. Ed told me about this as soon as I read it. I was going to call you or write you and didn't...hope you forgive me.

Not sure what to say except you know how much we both care about you. We're here if you ever need us. If you don't have the number around, just write and we'll send it to you. As you probably remember, we don't answer the phone till we know who it is, but if it's you, we'd always pick up.

Hugs,

Deb
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Postby kathindy-sue » Fri Jun 29, 2001 2:35 pm

Synne, hang in there. I have a friend who's an epileptic and she's a semi-retired judge! Brilliant woman. I also have another friend who's epileptic and takes Dilantin and phenobarbitol. She drives a car (as does my judge friend) and has 2 children who are just fine. When taking phenobarbitol, your baby is born addicted to it but if the doctors know this in advance, they can monitor the baby and wean if from the drug with no problems. So you see, epilepsy is NOT the end of the world, just a major adjustment is all. You'll be just fine, as long as you take the meds. If you do start having seizures again, there are many drugs out there or combinations of drugs they can try. Good luck to you. Stay informed and active in your treatment. Don't be afraid to ask the doctors questions and keep at them until you get your answers.
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Postby Lizzie » Fri Jun 29, 2001 8:02 pm

Synne: Isn't this a marvelous place?..I feel the support and caring. Kathindy-sue made some great comments.
Ydog: Hope it did not seem like I was challenging you..I was in a MOOD..I am a moody contrary woman. You seem to be all over the map on what you do for a living..sort of living a banquet. I have taught special ed for 21 years this November. I can retire in 10 years and plan to try something new..do not know what yet..maybe back to school first. I'd like to write but don't think I have the spark necessary...unlike you.

<hr>I always keep my promises, she said
      Except when I don’t
And I promise to love you forever

Fortunately, I understood exactly
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Postby Lythande » Sat Jun 30, 2001 9:03 am

Lizzie,

Synne has been on AH almost as long as I have - I knew her from anothe r board in 1990 and she came here not long after I did - toldja this place is addictive!

Deb

<BLOCKQUOTE id=quote><font size=1 face="Verdana, Arial, Helvetica" id=quote>quote:<hr height=1 noshade id=quote>
Synne: Isn't this a marvelous place?..I feel the support and caring. Kathindy-sue made some great comments.
Ydog: Hope it did not seem like I was challenging you..I was in a MOOD..I am a moody contrary woman. You seem to be all over the map on what you do for a living..sort of living a banquet. I have taught special ed for 21 years this November. I can retire in 10 years and plan to try something new..do not know what yet..maybe back to school first. I'd like to write but don't think I have the spark necessary...unlike you.

<hr>I always keep my promises, she said
      Except when I don’t
And I promise to love you forever

Fortunately, I understood exactly
<hr height=1 noshade id=quote></font id=quote></BLOCKQUOTE id=quote>
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Postby YDOG22000 » Sat Jun 30, 2001 10:20 am

oh no lizzie, no challenge etc. or anything like it from here. must definitely be a misunderstanding. I first volunteered in a DD group home at about 20. later, i returned to the field as direct care in large institutions. also worked on the MH side private sector. Became a case manager for community programs. Did a long stint in social services administration, funding, program design working with compliance regs etc. Was also case manager and various other things. Maybe that will give you a feel for it. but you're right, I am evasive. Doing other things now. and thanks for the compliment. Hi lythande, I am pretty new here and having a good time. Hi synne. I think its neat that 3 people with dd backrounds ended up on this thread!!!! Good folks both of you. giving. what else is there?
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Postby Lizzie » Sat Jun 30, 2001 7:32 pm

Ydog: I'll bet you'll be one of the few that will understand this: I am a very selfish woman. I get far more out of my work than I could ever put in to it. I love these kids and do my best for them but for me it IS work. Some kids are just a challenge to be with but most just love so naturally and are so giving of themselves that I am in awe of how wonderful they are. I get hugs and unconditional love and understanding to the nth degee everyday. When I screw up, and I do, my kids just pat me on the head and forgive me. I have learned so much about what is really important from these special, special children. You can't stay angry with someone who doesn't hold a grudge, you learn to pick yourself up, dust yourself off and take the next step and the one after that. I have had a bout of depression these last few months..these kids have shown me that the trick is to just keep going and never let the bastards get you down...
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Postby YDOG22000 » Sun Jul 01, 2001 1:41 am

oddly enough, as a pagan, i still remember some words of a minister that used to live across the street from us. Said you'll never find fulfillment without serving others.
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