Hello all!

I have appointment for Monday, May 20 to discuss meds but I have a question right now that I'm hoping somebody can help me with.

Does anyone here experience severe dizziness with their epilepsy? I've been having some horrible dizzy spells off/on for several hours now. When I laid down on the bed the whole world just turned over!

Thanks for any advice/opinions!

Take care everybody!

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

Hey Nic! i have not talked to you in a while! Did you get my mail? I hope so, I have been having problems with it lately! Anyway, you just described most of my days! I am not sure if it is the Epilesy or if it the mads! What are you taking at the present time? I am on Neurontin & Tegratol. I also go days without sleeping. I am about to go insane. I was up all night Saturday night & went to bed about 7:00 AM Sunday morning & got back up about 11:00AM & I have slept a total of 4 hours since then. I am not even tired. I am about to go insane her. Anyone else have this problem?
Let me know what the doc tells ya!
Hugs,
Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.

Hello Kim!

Thx for responding! Yes I've your e-mails. Sorry I haven't gotten back to you yet. Just been so busy as my fiance and I are getting ready to go away for a few days. http://www.healthboards.com/ubb/smile.gif

At the moment I'm not on any meds. When I go back to the doc we're going to discuss my options. I used to take Dilantin and didn't really have any problems at all with it, other than bizarre dreams.

The dizziness I'm having at the moment is unreal and driving me insane. I'm also having very dull headaches along with it.

Well I'll let you go for now. Thx again for your response. Take care!

(((HUGS)))

http://www.healthboards.com/ubb/heart.gif Nic

I've had quite a few dizzy spells, that one of the reasons I went to the dr in the first place. Now that I'm on meds, when I turn out the light and lay down, I get this crazy sensation. Dizzy, yes, nauseating, yes, but it's also like I'm laying in a hammock. Ever so slightly rocking around. If I sit up, it stops. Makes me want to puke!

Piano

Pianao and Nicola 76...
This is my first time on this message board, but have 23 yrs. experience with daughter Beth having seizures. Appreciate any insight you can give me of what it feels like on or off the meds as our Elizabeht cannot tell us how she feels (she is only 3.5 mental age)..
She is presently on Felbatol and Neurontin and we have to give her sleeping pills (Ambien)weeknights to help her get to sleep.
I have read that dizziness goes with many of the meds, but noticed one of you said you weren't even on the meds at the time. How often do you have seizures?
Beth has seizures a day on the weekend and midweek. We are afraid to up her meds as we don't want her to be a zombie, but are getting frustrated at our inability to predict.
Anything you can say about what you experience before the onset of a seizure and also anything you avoid that you feel brings on a seizure would be most helpful. We don't allow Beth near strobe lights or to have any diet pop. She eats little variety of foods...mostly salty/hash brown potatoes, french fries, pizza, packaged lunch meat and occasionally some applesauce...is very frustrating getting her to eat things she should.
Thanks,
God Bless you both,
Beth's Mom

Hi, Beth's Mom. I'm the one who's dizzy without meds. To tell you the truth, I'm not really sure how often I have seizures. That's what's so confusing about complex partials. I have to have someone tell me later or just guess by my actions and feelings later. Like yesterday, I think I had one. My coworker said I just stared and my desk and scratched the side of my thumb for about two minutes, then started working again. I don't remember it. And while numbering pages, I number about 15 of them as #5. So I'm guessing I had one then. I can tell when I have a big one, probably 'cause I wake up on the floor! Ha ha.

Nicola, have we helped you at all? Good luck.

Piano

Hi me to Im on carbatrol and lamictal and have been having the same problem. My nur.doc says it is not the meds so I go to my reg. doc he gives me motoin sickness pills and says "It will go away". Im looking for a new reg. doc but if any body hears any thing It drives me crazy dizzy to the point I cant stand up. When im about to have my sez.I get an ora about 30 second before, then get a blank look and rub my fingers to gether. When I wake up .It's like nothing hapened.

[This message has been edited by rekabs (edited 05-09-2002).]

What are everyone else's side efects after you have a seizure? I am pretty much in bed for a couple of days afterwards & I do not recall anyone ever mentioning this problem. Is it just me? Am I a big baby or do you just get used to it after years of seizing?
Would love to hear you thoughts on this one too!
http://www.healthboards.com/ubb/dizzy.gif still dizzy as well! I hope this gets better soon for all of us!
big hugs!
Kim

[This message has been edited by Ksavage (edited 05-09-2002).]

hi there!
yeah i've been experiencing major dizziness for the past 6 months. Just in this past week it has gotten really bad. I went to a neurologist yesterday and she said i am having break through seizures or complex partial. I dont know if this is what is happening to you. and i dont want you to worry. I just noticed what you asked and that you wanted advice. It may be something to ask your doctor on you next appt.
i hope you feel better

Hi All http://www.healthboards.com/ubb/wave.gif

I'll add my two cents.. after a grand-mal I am out of it for about an hour... infact I had one while at work one time was getting ready to get on the train and down I went full grand-mall seizure my boss picked me up after the seizure was over and carried me onto the train there I slept for about an hour and was up and working .. I am thinking ksavage maybe this is because I have had them so long? I don't know.. I did hurt my knees pretty bad that day but that was it... How long are your seizures though?


Hugs
Koko

Hey ksavage I just noticed one more of your posts about sleeping.. ask the doc for a mild AD for bedtime this is what they did with me while I was on tegretol.. course I still don't sleep good anymore but I am also no longer on the mild AD for sleep .. not sure your doc would want to do this but maybe talk to him about it... I am better now then when I was on tegretol the anti seizure meds I am on now kinda slow me down a bit rather then hype me like teg does and that could be part of your sleeping problem... http://www.healthboards.com/ubb/smile.gif

Hugs
Koko

Hi All,
It's funny that everyone is talking about dizzy spells, because I've been going crazy with them since this past Monday. It started with just happening when I tilted my head back, and towards the right. Now it is happening whenever I tilt my head backwards, forwards or to either side. It lasts for about 30 seconds, then I'm alright for awhile.

Beth's Mom: Prior to my seizures, I feel like my body is disconnected from my brain. I feel slightly nauseus, and real dizzy...bumping into things etc. Then I go blank, and wake up about two hours later with a real bad headache, muscle aches all over, and a sore, bloody tongue. I am disoriented for two to three days afterwards. Hope that helps you "feel" what Beth experiences, but it sounds like each of us has different experiences. Good luck to all. http://www.healthboards.com/ubb/smile.gif Kathy

Hello everybody!

First of all, thanks to everybody who responded to my post! Sorry its taken me so long to get back here. I was in Edinburgh for several days making wedding arrangements and didn't have time to get to an internet cafe!

Hopefully this doesn't sound bad but I'm happy to hear that I'm not the only one who has been suffering from dizziness. Makes me feel a lot less alone. Along with the dizziness my headaches have been getting out of control.

Luckily I have my doctor's appointment on Monday afternoon to discuss meds, tests (EEG if needed) and all that good stuff. My finace is coming with me so that will make things easier.

Take care everybody! I'll let you know how the doc appt. goes! Thanks again!!

(((HUGS)))

http://www.healthboards.com/ubb/heart.gif Nic

Hey Nicola, http://www.healthboards.com/ubb/wave.gif

Let us know how your doctors appointment goes http://www.healthboards.com/ubb/smile.gif and hope all is well and your having fun http://www.healthboards.com/ubb/biggrin.gif


Hugs
Koko

Thanks so much Koko! Will do!

(((HUGS)))

http://www.healthboards.com/ubb/heart.gif Nic

Totally off the subject here guys, but I want DEATAILS of this wedding of yours Nic! I could use some cheary news today & would love to hear about your plans! This is such a wonderful thing for you & I am very excited for you! Fill us in! http://www.healthboards.com/ubb/love2.gif http://www.healthboards.com/ubb/dance.gif
Wishing you all good spirits today!
Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.

Piano,
I'm with Ksavage...love weddings...when is yours and what do you have planned?
Our 20 year old son is getting married March of next year to a girl he has gone with for about 6 years...they have a two year old son together...we love her and of course the baby, so though I hold my breath to see it happen ( I never count on what tomorrow brings)it will be joyous.
Let me see...we want to know what you will wear, flowers, where the ceremony will be or a justice of the peace, any family, friends, reception stuff. How did you know this guy was the one?
Beth's Mom

Hi All,
A wedding...how exciting!!! My 27 year old son is getting married August 31! I'm going to be a Mother-in-law for the first time!!! It's all very exciting. My cousins are going to help me pick out a dress, and that's going to be a hoot http://www.healthboards.com/ubb/smile.gif! Good luck with the plans...can't wait to hear all about them. Kathy

Well, Beth's Mom, it's actually Nicola who's getting married...but I hope to soon. Get married, buy a house, have a child. But I'll sure tell you about it when I do!

Piano

PS Beth's Mom, do you have a name or do we just refer to you as "Beth's Mom" forever? I sure don't like being called "Jaime's Sister", like I have for years...

Well tomorrow is my doc appt. Hopefully it all goes well as I have about a thousand and one questions for him!! http://www.healthboards.com/ubb/biggrin.gif

By the way, my wedding is on September 14. Plenty of time until then to get this seizure business sorted out I hope!

Take care everybody!

http://www.healthboards.com/ubb/heart.gif Nic

Piano....
My Name is Marilyn!
I guess when I came on this site my connection to the topic was as Beth's Mom, since Beth cannot speak for herself. Funny, the main reason I initiated going to court was to be her advocate, because I became so damn mad that one man(delivering doctor) could have the audacity to change the course of her life forever and run away scott free. We never took Beth into the courtroom, but they did show a video of her the last day of presenting our side...the doc was very stoic, but his young wife (he divorced his wife to marry a nurse in his office) who had been smiling sweetly throughout the trial, had tears streaming down her face. --- The hardest thing for me as mother to my son and wife to my husband was to care for them as much as Beth...I guess I feel like her voice in this world in so many ways.
From now on will sign my name instead, as feel I have started to get to know some of you.
Piano, is that your real name?

Sorry Niccola, I goofed on who was getting married!
I have a friend who does flowers for weddings (Martha Stewart type bouguets,etc.). I went with her yesterday and it was a huge big city Catholic Church...as a Methodist I can tell you I was awestruck at the site of the interior of the church...reminded me of the feeling I get when going in the National Cathedral near Washington DC (Have been there 5 times). I am a firm believer in a wedding being before God and witnesses, even if it is a justice of the peace, but a church can add so much.---When our son gets married I have requested that his fiancee use the crystal candlesticks that are from my mother's side of the family and a scottish wedding song played sometime for my father's side...otherwise we are paying for the honeymoon, rehearsal dinner, tuxes, bridal bouquet and boutonniere's...is there anything else we should be responsible for? --- Our son is in premed and we are currently paying his tuition to help him get through without major loans, though he pays all other living expenses. --- Her bridal gown is off-white strapless and her maid of honor and bridesmaid are wearing black.
I want Beth to wear some color of purple (her favorite) and I think I will wear perriwinkle. Guys will be in black tuxedos.The kids do not attend church...my son said they think they will start so they can have a church to raise their "kids" and be married in...will see.

Appreciate all your honesty in telling me about the dizziness...I had not thought of that with Beth, though we know she needs sleep after seizures.

Hope you are all having the mellow day we are at our house today.
Marilyn


[This message has been edited by Beth's Mom (edited 05-19-2002).]

Hi Marilyn! Gosh....it sounds as if you have so many exciting things going for you right now! The wedding sounds like it is going to be beautiful! & you sound so calm! My mother freaked out about my wedding & she paid for NOTHING! But she wanted to plan the entire thing! I think you are of great help by paying for so many things for your son! I can promise you that by doing that it will be alot less stressful & they will be able to have exactly what they want! If there were only more mom's like you in the world! Want another kid? I am a recent orphan? http://www.healthboards.com/ubb/biggrin.gif
I wish you luck & big hugs for Beth!
Take care & keep it up!
Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.

[This message has been edited by Ksavage (edited 05-20-2002).]

Hello everybody!

Well I had my doctor's appt. today and I guess it went alright.

I've been put on Tegretol (200mg) once a day. I'm supposed to take my med at night before going to bed. How does that sound?

Anybody else take Tegretol? If so, what are the side effects like? My doc says that since I'm taking such a low dosage I really don't have to worry about side effects.

Well that's all for now! Bye for now!

Take care everybody! (((HUGS)))

http://www.healthboards.com/ubb/heart.gif Nic

Hi Nic,
I'm on Tegretol (Carbatrol...generic)and it seems to agree with me much better than Dilantin. I take 600 mgs a day....200 in AM, 400 PM. I was on 800, but my levels were too high, so the Doc cut it back last week. I am tired in the afternoon, but it may be because I am depressed from not driving etc. Good luck! Kathy

Kim,
With the exception of the lawsuit that bought us our fixer upper cottage up north from Beth's lawsuit, my hubby and I never inherited anything from our parents and got everything the hard way. The one thing my parents did do was to put my two brothers, sister and me all through college. So I figure the one thing I can do for my son is to help him through college, especially since he wants to be a doctor to help others and because he and the girl he is marrying already have a son. I am delaying retiring from teaching (next year is my 25th year) just to help him get a start on life. I would gladly "adopt" you but am stretching to accomplish what I am!
I came on here looking for answers but am slowly realizing that we can be the support for each other that cannot be measured in meds or answers to our problems...Getting to know all of you is a very reassuring, life-affirming thing for me...I hope it is for you also.
Wish you the best!
Marilyn