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View Poll Results: How long have you had Epilepsy?
Since Birth 27 5.92%
Less than 1 year 41 8.99%
1-5 years 86 18.86%
6-10 years 53 11.62%
11-20 years 85 18.64%
21-30 years 65 14.25%
31-49 years 84 18.42%
50+ years 15 3.29%
Voters: 456. You may not vote on this poll

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  #1  
Old 07-29-2007, 05:23 PM
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How long have you had Epilepsy?


Edited:
POLL IS PUBLIC - Feel Free to Vote!

Last edited by brain; 07-30-2007 at 01:13 AM. Reason: correction... this poll is public!
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  #2  
Old 07-29-2007, 05:38 PM
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I was diagnosed at 14(after my first seizure) with juvenile myoclonic epilepsy so that makes 25 years for me. Sometime I wonder if I was born with it since I do have a distant cousin who also has epilepsy(not sure which kind).
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Old 07-29-2007, 05:49 PM
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Originally Posted by Blessed View Post:
I was diagnosed at 14(after my first seizure) with juvenile myoclonic epilepsy so that makes 25 years for me. Sometime I wonder if I was born with it since I do have a distant cousin who also has epilepsy(not sure which kind).
You can have a Lab Work performed like I have
had mine done.

Mine is a Genetic Inherited neurologist & Cardio Disease
and Disorder - and being Adopted, my Lab Work
was extensive and exhaustive. So I would advise
you to speak with your Primary Care or Neurologist
to request it and your Insurance will pick up the
tab. It will give you a peace of mind. However, do
not be surprised if the answers comes back with
more than what you bargained for, so expect the
worse even though it may never happen, so that
the shock won't overwhelm you.


Last edited by brain; 08-15-2007 at 12:46 AM.
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Old 07-29-2007, 05:54 PM
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I have epilepsy since I was 11 yrs old, had my first grand mal after lunch in school.
But in retrospect I think I had absence szs before it just went undiagnosed. I am going on 52 yrs this Nov. that makes 41 yrs of living with epilepsy. Since 1992 I have seen so many Drs.........ech one was worse than the next . Homeopathy has been my savior.

Riva
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  #5  
Old 08-05-2007, 11:21 PM
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I've had EP for 28 years now, current meds are dilantin 275mg/day, pheonobarb 90mg/day.
I also take meds for Ulcerative Colitis ~ Mesasol 3,000mg/day.

When I was first diagnosed with Epilepsy back in 1979, I was put on Dilantin b/c at that time there was not much known about the condition but today there are so many alternative meds.

I am 95% seizure free, only had 5 Gran-Mals (differant name now) in 28 years.
My Neurologist says that if I were to change meds after all this time, I could trigger more seizures and also risk lower brain stem damage.
The way I see it, if it's not broke, don't fix it.

Randy
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Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
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  #6  
Old 08-08-2007, 04:35 PM
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I was diagnosed in 01/00. However, I'm fairly sure I had the pre-disposition long before. My aura is strong deja vu, which I've experience for as long as my memory goes back.

Also, a cousin of my mother's started having seizures when she was about the same age. Another possibility, one that my lawyer was rather sad I didn't explore, was the fact that I was taking rather high doses of ephedra when my seizures started.
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Old 08-24-2007, 07:32 AM
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I had no seizures before I hit my head 4 years ago.
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Old 08-24-2007, 10:39 AM
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May 02 I had my first and only Grand Mal in my backyard, one month following a total knee replacement. Spent 4 days in the hospital. Chewed my tongue all to hell and felt like I had been beaten with basballbats, my back was so sore!
Since then countless simple particals and about 2 dozen complex particals. My last seizure was at my dad's funeral, I have been seizure free since April 05
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  #9  
Old 09-16-2007, 09:25 PM
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Brain,
What kind of Lab Work would I ask for to find out if my sons epilepsy is hereditary? Or maybe I miss understood and am not sure what the blood work would show.
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  #10  
Old 09-16-2007, 10:28 PM
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Originally Posted by execwife2002 View Post:
Brain,
What kind of Lab Work would I ask for to find out if my sons epilepsy is hereditary? Or maybe I miss understood and am not sure what the blood work would show.
Ok, the Neurologist / Epileptologist can
request an extensive & exhaustive blood
work for genetic / DNA / etc - this is a
very costly test. Very few insurances
will cover it or partially cover it; but in
my case, I was adopted and not much
information was sufficient in my adoption
records at all and the protocol information
was lacking.

The Laboratory Work will reveal a lot of
things: DNA, Inherited Trait, Diseases,
Genetic, et cetera. They are all sent out
to Labs all over the place; so it takes time
for all the results to come back.

But one warning - sometimes the results
can become downright ugly and traumatic.

I won't name names but one person from
another place shared with me what happened
and I'm going to use quotes however I've
shortened it and edited it and revised it
so people wouldn't know or suspect who
this individual is.


Quote :
When I had mine done, it nearly tore my family apart! The Doctor told my parents and I it was a DNA trait and all genetic and started to ask my parents a bunch of questions, more so on my mom's end than my dad's. My mom and dad were really upset and they were worried about my sister if she's got it too and he said the chances are 'probably'. My mom called her mom and had a long talk on the phone and they got into a fight. I was in tears. I never saw my mom so upset like this before. My dad talked on his cell with his parents and the only thing he got was that his mom could only remember his great-aunt was put away to a mental institution but she did not know what for. But she knows that her sisters who married and had children had 'strange children' who had to go to a special State institution, but they never said why. There was no way for them to talk to anyone as they're all dead for years. One week later my grandma called back and then tells my mom about her oldest sister of how they had to put her away because she would be wild as an Indian making a strange noise, falling on ground, and the parsonage told them she was demon possessed. They tried to cast demons out of her and could not. And her second eldest sister had the same spells later on after a bad bout of whooping cough and fevers, and they had to put her away. All there was left were 2 brothers and 2 sisters and we were instructed by our father never to talk about our elder sisters for they brought shame and disgrace to the family. On the next appointment the Doctor appreciated this information and was able to let me know that my children would face the possibilities of having epilepsy if I were ever to find a woman and get married.
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  #11  
Old 09-25-2007, 01:36 PM
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I was diagnosed in 1982 with Epilepsy in 1982 but I probably had it since birth since I also have a minor form of Cerebral Palsy. But I didn't start having the Tonic-Clonic seizures until then but when they where doing diagnoses of the EEG it revealed that I was pretty much on a daily bases having Absence seizures.
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  #12  
Old 10-02-2007, 04:58 PM
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I had epilepsy as a baby until I was about 3. I was taken of meds until I was 7 though. The drs thought I'd outgrown my epilepsy.The seizures I had as a baby were grandmal seizures.

When I was almost 25 I started taking seizures again and was rediagnosed with epilepsy. No one knows why I went 22 years without having seizures. The seizures I have now are only mild seizures. My neurologist told me that the seizures I take now could be auras.
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Old 10-02-2007, 05:14 PM
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Originally Posted by CQ:) View Post:
I had epilepsy as a baby until I was about 3. I was taken of meds until I was 7 though. The drs thought I'd outgrown my epilepsy.The seizures I had as a baby were grandmal seizures.

When I was almost 25 I started taking seizures again and was rediagnosed with epilepsy. No one knows why I went 22 years without having seizures. The seizures I have now are only mild seizures. My neurologist told me that the seizures I take now could be auras.
CQ - Epilepsy is KNOWN to go into Remission, if
you didn't know that.
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  #14  
Old 10-02-2007, 05:59 PM
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I'm waiting for that (remission) thing to happen for my son. He's on the GARD Diet and so far doing well. How long does it usually take to notice anything? Or iis it a sit and wait for a seizure to occur?
Marian
P.S. I am loving this new way of cooking. My husband and daughter (when she comes home to eat) are loving it too.
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Old 10-02-2007, 06:49 PM
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Marian,
MMM!! When can we come to dinner? Will you post some recipes? Maybe Riva will post some too. Give it a good month and you may want to track any changes, not just for your son, but for everyone. Is anyone sleeping, concentrating better, feeling more upbeat than usual for no reason? The changes may be subtle, why a diary can be a good way to note any differences.
Zoe
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Old 10-02-2007, 09:25 PM
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Here is the first recipe I made when we started. It was quick and easy.
BLUEBERRY MUFFINS
Makes 6 muffins
1 1/4 cup of Pamela's Mix (WFGF Baking & Pancake Mix) grocery store
1/4 cup water
1 egg
1tsp. vanilla
1/3 cup honey
1/2 cup blueberries
Mix all ingredients together and spoon into greased muffin pan, 2/3 full. Bake in preheated 350 degrees oven for 18 to 20 minutes.

They were wonderful.
Marian
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Old 10-03-2007, 12:34 AM
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Marion - I love Pamela's Mix too
Just for your info though... it does contain milk, which is not allowed on the GARD diet.
Those are my favorite muffins as well. The waffles are wonderful too.
When Dr John says perhaps the reason we (Rebecca and I) are not holding back the seizures, is that we have areas such as this that are not completely GFCF.
When we started the diet she had three months seizure free, and then they started back up again. Pain in the neck!
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Old 10-03-2007, 03:49 AM
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Originally Posted by brain View Post:
CQ - Epilepsy is KNOWN to go into Remission, if
you didn't know that.
Brain - No I didn't realise that.

But funny you should say that, I was telling someone how I went 22 years without having a seizure and the drs had told my parents that I had outgrown the epilepsy when I was younger. The person I was talking to had said to me that I could've still had epilepsy time during the 22 year break and just not realised.
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Old 10-03-2007, 08:21 PM
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Robin,
I haven't had my son stop the dairy yet. He is still adjust to the whole "grass" thing. Cutting the flour out right now is just a beginning. I hope to get him to cut the dairy out too. I just don't see that happening right now.
Marian
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Old 10-05-2007, 07:35 PM
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Have had epilepsyfor 38 years, when I was 2 years old I fell off of our back porch while on a tricycle and my head was pushed back real fast and hard at the same time. A few weeks later my parents said it looked like I was having clumsy spells when I would fall down. Soon after I was diagnosed with grand mall seizures, but later on were diagnosed as complex partial that cluster. It's been a long 38 years. Duke
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