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FORUMS > Epilepsy / seizure disorder
Replying to Topic: Frum people with epilepsy
Created On 2/15/05 10:33 AM by abbainmemphis


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abbainmemphis
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2/15/05 10:33 AM
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Hi there. My name is Jeff. I am 34 and have epilepsy. I had brain surgery 7 years ago this month. I would like to speak with other frum jews who had or have epilepsy.

Jeff
 
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goldy
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2/17/05 11:21 AM
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Jef, I was serving this site and it is just what i was looking for
I have had epilepsy almost my whole life After the mumbs or earinfection I got it
I have .Thanks G-d , 7 children
As a fum jew there is a big problem of stigmatizing From this I suffered very much and now I'm getting more open about it. People should be educated. It is high time for that
Goldy
 
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abbainmemphis
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2/17/05 5:49 PM
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I agree with u 100 percent. I got the epilepsy from birth when they used clamps too h ard and at 2 when i had chicken pox and 104 fever that caused the brain damage andmy 1st seizure
 
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goldy
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2/22/05 10:32 AM
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What do you want to talk about?
By me the epilepsy is getting worse, becouse of the hormonal changes during the menopause
I find it very difficult to say to my friend that it is not going well with me
Also the stress I have every month to get my medicine does not help I was in Maccabee health fund when felt a seizure comming So I yelled and went to nurse All was o.k. and they took care of the problems with the medicine
I do not wher you live, i live in Israel So every thing is more difficult here
goldy
 
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abbainmemphis
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2/22/05 6:44 PM
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How long have u had the seizures?

I live in TN in the United States.

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Originally posted by: goldy
What do you want to talk about?
By me the epilepsy is getting worse, becouse of the hormonal changes during the menopause
I find it very difficult to say to my friend that it is not going well with me
Also the stress I have every month to get my medicine does not help I was in Maccabee health fund when felt a seizure comming So I yelled and went to nurse All was o.k. and they took care of the problems with the medicine
I do not wher you live, i live in Israel So every thing is more difficult here
goldy


 
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goldy
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2/23/05 12:14 PM
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I have had seizures[petite mal] from the age of 7 [about]
Then after my first child i got grand mal seizures
I wrote in the "Horizon" about epilepsy under the name Sifra Salomon. The october issue
Also my story was told in the Chabad Newsletter It is not that I want to be famous It is that people especially the jewish people think very strange about epilepsy
That is what I would like see to change. That will not be 1.2.3 But if I do nothing, nothing will change for sure
I read in the sefer Pardes Rimon" from Rabbi Teitler and he is quoting from the Eben Ezra
that a person should not get married to some one of the house of lepers and the house of epileptics
That hit me and since that time I have the urge to give more information about epilepsy
not knowing , makes people fear, causing those strange mythes I hope I'm clear
About cancer one can talk, but not about epilepsy I have had epilepsy for about 50 years Oi wee half a century. Time flyes
goldy
 
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goldy
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3/4/05 5:46 AM
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I would like to know if other people living in Israel have problems getting there medication
Every monthe there is an other story and sometimes,with the Zarontin, it is not available
I'm writing emails and letters and would like to know how others are handling a problem like this
goldy
 
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noname234
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3/8/05 9:56 PM
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hi i am 20 and at 18 had my first seizure. i was fine for 2 years until recently i had my second. what to do???
 
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goldy
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3/10/05 4:51 AM
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Noname,
What kind of seizures did you have. There are many kinds from the big grand mal seizure till a little shock in part of your body
You should learn a lot about epilepsy. You can live a normal live and have children with the right medication
If you have any questions feel free to write again
goldy
 
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abbainmemphis
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3/10/05 10:12 AM
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Going 2 years in between seizures is normal. I had the same thing when i first got epilepsy at 2. I had a grand mal seizure at 2,4,6,8,10 and 12 and then they changed from grand mals to simple or complex partial seizures.
 
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abbainmemphis
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3/10/05 10:15 AM
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The main problem i had with epilepsy was , of course, driving, that is until i had my brain surgery, and finding a wife. While i was dating i always told my date about my epilepsy immediately, because i did not want to spend money and time dating just to find out later when she finds out about my epilepsy that they are scared or not interested.

Baruch Hashem, i found my mate and i have a 2 yo son.
 
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goldy
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3/13/05 10:58 AM
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Is that the reason that one has to be 2 years seizure-free in order to get a drivers licence?
I used to have once a yeare a seizure. Instead of choosing to go on more heavy medication, I took it as it came, once a year. Hormonal changes do play a role with epilepsy. I do not know if "noname" is a male or female. pregnancy and the montly periods could couse also seizure. Jef you still have the brain damage or they took the damage out. Complex partial seizures do you loose consciousness? Sorry for asking so many questions
We should be happy. It is Adar close to Purim When Adar begins the simcha[happiness increases
So don't forget to be happy
goldy


Edited: 3/13/05 at 3:55 PM by goldy
 
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noname234
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3/13/05 3:44 PM
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i am a female and not yet married. i do not have my driver's liscense because i never got around to taking the test because after my first seizure i had the dr told me to wait a year and then i just never did it and now i suppose i should wait a little more.
so what is your opinion on getting preg being on meds. i am on a low dosage because it only happened twice.

so the first time i got a seizure (at 18) i went onto meds for a year plus 2 months and nothing happened during that time so i went off with my doctor's permission. then 6 months after being off it -out of the blue -i had a grand mal during the night.

so i do please g-d plan on marrying soon and i pray that all will go well and be well. just trying to see how people with epilepsy (which i suppose that i what i have now) do about marriage.
 
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goldy
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3/13/05 4:06 PM
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Noname
Mazal tov
I have bli ayen hara 7 wonderfull children. There is no reason for you not to have such a blessing
There is medication which is safe to use during pregnancy. I mean safe for the baby
It would be a good idea to get yourself adjusted to that kind of medication. Most of the time one needs more medication during pregnancy, by me it was the other way around. So after the baby was born I had a very hard time with the hormonal change
When I'm stressed ,upset, or do not eat[low sugar] or drink well I'm prone to have a seizure
Once I came in a status [on pesach] after not drinking enough. Personally, I think seizures do not come out of the blue. There is always something that triggers it
be well
goldy
 
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noname234
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3/13/05 8:23 PM
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goldy,

thanks for the information. i feel much better now. what is the name of the medication you are on if u dont mind me asking. i am going to see my doc on tuesday and wil discuss this.

 
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noname234
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3/13/05 8:27 PM
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and another thing. i agree with you on the fact that the seizures dont come out of the blue. but they seem out of the blue until you think for a second what could have triggered it and then u work on improving that specific thing.
 
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goldy
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3/14/05 11:59 AM
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Noname,

I'm on Zarontin 500 mg a day,lamictal 250 mg a day and ospolot 100 mg a day
Beside that I take taurin 4000 mg and it did cut the regual medicine in almost half
My doctor was not so happy about it, but he made a note of it. Taurin is an amino acid
I know Zarontin is not tested for pregnancies. During my pregnancies I took phenoberbital.
If you live in Israel there is a specialist in Tel Aviv who does this kind of treatment
You can always ask. That why this site is here. So feel free
feel well
goldy
 
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noname234
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3/14/05 6:03 PM
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oh my that sounds like a lot of meds. all i take is 300 mg of trileptal a day.
 
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goldy
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3/15/05 10:29 AM
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What is medical working material in trileptal. It should say on the insert

I have never heard of it[doesn'tmean anything]

goldy
 
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hisbonenus
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3/15/05 2:31 PM
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Hi, I'm probably an unusual case. I had partial seizures about every 2 months since I was 11 (I think, I didn't realize what they were). I had my first grand mal when I was 17, which was when I found out I was epileptic!

I was on Dilantin and Tegretol, both of which I was found to be allergic to (BRIGHT red rash). After that, I got scared I'd be on meds the rest of my life, plus I read the label and scared myself silly. So I took myself off entirely (they had prescribed Neurontin, but I figured I'd likely be allergic to that too). The doctors weren't happy, the school wasn't happy- but I had another few grand mals, probably every 6 months or so, for 2 years, and then B"H have been seizure free since then.

I'm B"H happily married now! I later realized that lack of sleep and not eating properly (typical high school behavior) was a major part of the trigger for my seizures. For 2 years I had to be VERY careful about either eating really well or sleeping really well (at least 8 hours) to feel fine. Now, B"H BA"H I am seizure free for a really long time, not on meds, and if I'm moderately careful about my eating and sleeping patterns, I'm fine.

I also have a very big Bracha that I ALWAYS get an aura at least 15 seconds before a seizure- enough time to lie down, or pull over if Ch"V I was driving. Still, I'm glad I'm not facing it on a regular basis!

I sometimes wonder if my EEG would still come out abnormal, but I don't want to go to a neurologist, they'll probably try to put me back on meds.
 
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FORUMS > Epilepsy / seizure disorder

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