LIFE GOES ON WITH OR W/O EPILEPSY

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The Group name pretty much explains it all... Life Goes On with or without any disability.. So try to live it to your fullest and enjoy it while you can for we never no when that (day/night) comes..

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Latest Activity: Jun 8

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Friends? HOW?

Started by Grace Johnson. Last reply by Grace Johnson Jun 8. 7 Replies 2 Likes

Ok, Began sez at 14, wound up in homebound school, then just homeschool. I'd never been one to go and hang out with people outside school and church... That's where my friends were, and where I spent most of my time. I don't remember much of…Continue

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Comment by Marlene Emmett on January 21, 2013 at 8:50am: Terrence:
The doctor who made the mistake of taking me off of the medication
had promised me that I wouldn't have any seizures by placing me on
another medication that would hold the seizures off.
But the medication didn't do the job,and I got GrandMAL's anyway.
And the doctor after my last GrandMAL after a series of them
for a solid week was FIRED and I got a new doctor who put me
back on Tegretol right in his office!
That was 26+ years ago,it will be 27 in April.

Comment by Terrance Lee Fields on January 21, 2013 at 12:41am: Marlene

If your Dr ever took you off tegertal and u didnt want off but she quick scribeing it and u hav a sz I would be seeing a Lawer,hate to say or think that but dr should know not to.,Doing to good there stay sz free

Terry

Comment by Marlene Emmett on January 20, 2013 at 1:42pm: Tammi:
I also have a few great drug books I keep on hand to check the
side effects of any drug against my TegretolXR.
I've been lucky and havn't had any drug reactions.
The one thing I don't like about Primary Care doctors is that they're
afraid of pescribing certain things when you tell them you've been
taking them for years. Primary Care doctors in Flordia refuse to
pescribe pain medications and make you see a pain specialist to
obtain your medications that you need.
I'm going to have to do this with my medications for Migraine,
my bad back,knees~one even wanted me to see a shrink for them.
I told them I've been to 5 and not one is going to give me the
answer I need to a certain question and I don't want to waste my
husband's hard earned money seeing a doctor I don't need.

Primary care doctors are NOT God's.
They make major mistakes.

Comment by Tammi Zavardino on January 20, 2013 at 1:11pm: Marlene I know what you mean about Primary care doctors not knowing or understanding Epilepsy or the meds because I recently went to see a Primary care doctor about my hip problems and she was going to prescribe a pill for pain and I asked her how that would react with the other meds I was on and she said don't worry about it. If I want to know about meds I go to the pharmacist they know more about them and the side effects. I don't blame you for not wanting to come off the medicine that is obviously helped you. That's why I asked the questions I did because we live with it we know more about what is going on than the doctor who see's us for maybe five minutes every three months. Take care

Comment by Marlene Emmett on January 20, 2013 at 12:49pm: Tammi:
I've found that regular Primary care doctors really don't know/understand what Epilepsy or the medications used to control it.
My newest doctor thought she was doing a good thing till I stopped
her and explained what had happened when I was taken off of Tegretol~She didn't say a word after I explained the situation.
Of course I asked why she thought and I told her it wouldn't be happening,that I trust my neurologist in New York who I've seen
for 26+ years~My philopsy is "If it ain't broke don't try fixing it".
I'm "old school" and not all the time is something new the best
thing/drug for you,I'll stick with Tegretol XR.

First of all,I've never been told what caused my Epilepsy??
Didn't suffer a head injury that I know of,and there's no clue as to
what caused it in my biologicial mother/father's background.
All of a sudden when I was five I began to suffer abscense seizures
in school,and I'd drop things like glass milk bottles or dishes.
I was diagnosed with PetitMAL seizures and tried all kinds of drugs
at age 6 by my first doctor after I almost took my eye out on the
corner of my desk at home.
I also had the first abnormal eeg~most of my others are NORMAL.
I've only had maybe 4 abnormal ones .

Comment by Tammi Zavardino on January 20, 2013 at 11:36am: Marlene if what you are on is working or has been working that long I wouldn't mess with it but even after a period of time some meds can quit working and your back to step one I hope this doesn't happen to you. Usually a brain injury is harder to control than something that happened like a bad fever that later made your seizures start. But even if our seizures are controlled we are still at risk but hope like crazy that it won't happen again. But you Have the situation under control for now so stick with it. I don't have to tell you all these meds can cause other problems and that your doctor probably suggested since you have been seizure free so long that maybe you could go off it and be ok but you have to live with what may happen and some of those side effects from the drugs are why the doctor might want to cut back on them or get you off them completely. Did you ask your doctor why they wanted to take you off the Tegretol XR?

Comment by Marlene Emmett on January 20, 2013 at 4:00am: Art:
You ask a very valid question.
My latest Primary care suggested that I go off Tegretol XR.
I told her that won't happen. Told her the last time I went off Tegretol
I went from 0 GrandMAL to haveing 9 a day for 1 solid week.
NO THANK YOU.
I don't feel controlled. All I know is that I have my life free of
seizures that if not on medication could kill me..
My seizures are under control.
And I thank the day I was put on Tegretol in 1969 after my
first GrandMAL by my third Dr. Nicholas Christoff.

Another thing, I have the television show "Dr.Kildare" to thank
for doing a episode dealing with Epilepsy.
The episode was called "Tyger,Tyger",and it starred Yvette Mimeux,
as a surfer who was diagnosed with PetitMal that later became
GrandMAL which finally killed her when she had a seizure while surfing~I was only about 8 when it aired.
But it taught this young girl to take my medication or I could die
from not taking it~Have always wanted to thank Richard Chamberlin
for the episode,and think it should be something every Epileptic
should see just once in their lives.

Have never seen another epiosde of any medical drama undertake
the subject of Epilepsy since then really,alway looking for one.

Comment by Art on January 19, 2013 at 11:56pm: Terry,

Thanks. After 20 or 26+ years do either you or Marlene think or yourselves as having controlled epilepsy rather than having epilepsy? What is the longest a person has gone in between seizures? Art

Comment by Terrance Lee Fields on January 19, 2013 at 10:17pm: Art

you are doing the right thing ,,,,don't want to take the chance,when you stop having sz Leave it alone, A Very good Dr should know that to ,and I beleive a real dr will, Mind did, going on 20 yrs free now, So stand up for yourself and speak out,give your feeling,your the one that has to live with it, Take care

Terry

Comment by Tammi Zavardino on January 19, 2013 at 4:19pm: Hey all sure nice to hear when you have found what works for you! I am still looking for that but have found that strong odors or perfume and stress trigger mine so I try to stay away from that kind of thing and live a pretty active and although not seizure free don't have but one or two a month. What I am really dealing with right now is getting some free time since I am so busy. But love helping others and if it keeps me from thinking about things I don't want to and keeps the seizures away than I am happy. Take care and my best wishes to you all.