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TOPIC TITLE: Frum people with epilepsy
Created On 2/15/05 10:33 AM
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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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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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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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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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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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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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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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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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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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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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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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noname234
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3/15/05 8:09 PM
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hisbon,

you male or female?
 
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hisbonenus
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Can't tell by my picture?

I'm female.
 
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goldy
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3/17/05 11:12 AM
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I liked you answer[can't tell at the picture]
good for you, you aware of it. I do not want to sound worried, but be aware of hormonal changes. I had times I was compleetly of the medication. It felt great. And now I need more. look at the site www.Taurn.com That helped me a lot and it is compleetly natural
goldy


Edited: 3/17/05 at 4:57 PM by goldy
 
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noname234
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hi goldy,
i check out that site. it isnt going thru are you sure thats the right address?

 
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goldy
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I'm sorry a spelling mistake
Taurin is the name.The website is www.Taurin. com
Shawua tov
goldy
 
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noname234
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hi,
that doesnt either seem to be going thru.
 
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goldy
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I went on the internet and found 2 sites There are more,I'm sure
www.springerlink.com
www.websters-online-dictionary.org
It is funny on the bottle it says taurin but it is also spelled as taurine, with an e at the end
May be this will help I hope you find the information
goldy
 
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noname234
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goldy,

thanks, i will check it out and see what i come up with
 
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goldy
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I hope you all had a nice purim
Now we are getting ready for pesach
Just do not over do it ;dust is no chometz
goldy
 
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hisbonenus
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Quote

Dust is not Chometz

Very true. I like the way the Lubavitcher Rebbe put it:

Dirt is not Chometz,
And your children are not the Korbon Pesach!

Good luck preparing, everyone!


Edited: 3/31/05 at 7:26 PM by hisbonenus
 
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pealegesh
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Hello, I am a new Eplileptic patient and I have other medical problems as well. Have you or others had or have an EEG and can tell what this is??. I have to take that and an EMG and an MRI of the BRAIN and NECK, and take new medications. I hope that you can help me and that I can help you. Thank you and you have a pleasant day.
 
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ag
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When my son was 2 months old, he had an EEG done for 3 weeks straight. It's a painless test in which electrodes are attached to the scalp and brain activity can then be observed on a monitor. Any seizure would show up in the brain waves and can be recorded on video tape. Hatzlacha--I hope it goes well!
 
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goldy
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to paelegesh,
You write you have epilepsy and other medical disorders
Are those other medical disorders conected with the epilepsy?
Epilepsy has many causes. So it could be easily caused by something else.
Our body is one unit, one whole thing. Sometimes I feel one medical problem is treated and the other one is neclected. And often they are in some way connected
Also be allert on the medicine. read the insert of every medicine.
For exemple; I have a coagulation defiency from the blood. I only found out after using depakote. I had pain all over, and de medicine was the cause. Since I found out I read all the inserts
By the way you should know that Factor Xl defiency is very common by jews from askenazy decendent
Be well all of you
goldy
 
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goldy
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Hi all of you
I'm back from vacation in the States and we got a new grand daughter!!!!!!!!!!
I thought there would be a lot of messages on the site, when I would be back home. There was nothing new posted. Where are you all? There is so much to write about epilepsy and this is the way we learn.This is also the way we support each other
regards
goldy
 
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noname234
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Hello. I'm back. I am not yet married but i suppose it's coming closer and would like to know more about the effect that the medication can have G-D FORBID on children
 
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pealegesh
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Dear Abbainmemphis: Because of the Epilepsy, I have had in the past two years 4 seizures and two TIA'S. It has to do with the Diabetes.
 
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goldy
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Noname
Ask you docter how good or bad the medicines are for your future children, you are taking at present. There are sights like "drug recall' where you can search for your medication and the side effects. Or just write the name of your medicine on the search engine
There are many kinds that is safe to use during pregnancies.
if you are afraid for later that the kids might think them as "candies"
That is also a problem that could easily solved
May be it is keday to get yourself [with the docterssupervision]adjusted to medication which is safe
I have not been for a long time on the site, because I saw no movement or discussions and thought it was finished.
welcom back and "chaque someach"
goldy
 
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goldy
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pealegesh
Yes I also feel dat sugar[a low sugar] can trigger a seizure. So it does not suprise me that it could be connected with diabetes
Also dehydration can cause seizures. I can not fast anymore on Yom Kipur, which i do find very difficult not to.
Now that my husband has multiple myeloma and is not allowed to fast it is easier for me to deal with that.
goldy
 
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Ymina
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Shalom

I also have epilepsy however I have been on the ketogenic diet for 8 years now and its helped me more than medication. However during the High Holy days (especially Yom Kippur, or any other fast day for that matter) its really hard for me to follow the halacha of fasting. Unfortunately I can't and it bothers me. I've had a cheder allowing me to eat but I really want to fast. How can I do both, is it possible? (What I mean is instead of eating three big meals, can I maybe have snacks instead?) Has anyone else been through this? Btw my epilepsy is associated with my cerebral palsy. Thanks for any info.

Ymina
 
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abbainmemphis
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Hi there, Ymina. I also have epilepsy and cp. I did not know if I would ever find another such jew. Feel free to email me at jf@chozrim.com if you would like to continue talking.
 
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goldy
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How can you fast when you have to eat????
If you have to eat then you are forbidden to fast. For others it would be forbidden to eat. So in other words; the one who has to eat does the same by eating, while others have to fast to reach that level
I also felt bad the first time I could not fast. The above was explained to me and I felt much better and I do not feel guilty about it
goldy
 
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Heth
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Hi, I have a son who is now 16. HE was diagnosed at age 8 with Petit MAlle epilepsy- absences. His EEG's have consistently shown that he has an absence every 3 mins for a second or two. So far B'H he has not had a grande malle siezure. He has no warnings and you cannot tell when he is having an absence.
However he is definitely worse when he is hungry and tired.
he also has ADHD.
We have a problem - we have to decide whether to treat the epilepsy or the adhd, as the drugs contra- indicate.
meantime my son- bless him has been on many different meds and for the last 2 years has totally refused to take anything. He says the side effects are dreadful. ( its true with tegratol we ended up in emergency cos he couldnt swallow- tongue swelled ). he begged us not to give him meds - he told us we were taking his life away.
I dont restrict him at all- he does everything is very sporty etc.
I just have one question- does anyone know whether the male adolescent hormonal changes may bring on the grand malle siezures?
Thanks Heth


-------------------------
Mother of 3 , psychiatric social worker
 
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abbainmemphis
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Puberty can very well bring on seizures. It is possible that when puberty ends, the seizures will end.
 
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tuna4ta
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Hi
I'm a 15 yr old girl . I have had seizures since I was 15 monthes old.
I just resently found out though I have sido/stress seizures. Although I have had seizures for almost my whole life since I WAS 12 ITS BEEN GETTING WORSE.You see when I was 12yrs old. I made a big mistake ,my DR . said that we were almost ready to take me off my meds.
But I decidd that I didn't need the DR. & did it myself since then it all restarted ,I can not fast , go on sleepovers ,go on school conventions,
or anything else for that matter (INCLUDING PRODUCTION.)(I'M in Gr 9)
.i OFTEEN RUN AWAY FROM HOME B/C I have to proove to myself my independense.


-------------------------
moshiach now!
 
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abbainmemphis
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Hi, tuna4ta:

I am sure it is very frustrating.

Are you getting your seizures during THAT time of month? If so, that is very normal. Let your dr know that.
 
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tuna4ta
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Hi WHE N I get these in school the girls get abit confused .Were in the middle of production I;m afraid to take my epart b/c I'm afraid thart i'll sforget my lines & make a fool on stage. am I going overboard


-------------------------
moshiach now!
 
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abbainmemphis
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Hi there.

Have you ever explained the seizurs to your friends and why you get them?

Do you get the seizures when you get nervous? What type of seizures do you have?

No, you are not going overboard. You can not let the seizures ruin your life.

jeff
 
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newatthis
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Hi there, i was misdiagnosed with a mood disorder one year ago. When i started having these head and body jerks i went to a neurologist who did an eeg and found the results to be abnormal. SHe was surprised that i never realized that i had a problem before. Is there anyone who had a simular experience out there? Did anyone find out when they were an adult? Did anyone experience head jerking that i can controll from time to time?
 
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tuna4ta
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Unfortantley these things happen alotsometimes they can b controled other times they can't however I am no expert but resently been told I have pseidoseizures:. sometimes they are controlable & sometimes not.like 4 instance I am being held back from atrip b/c my seizures are not tottally controlled right now.however being 15 I can't do u alot of good if u need more help go & research @ the library


-------------------------
moshiach now!
 
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tuna4ta
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DEAR GOLDA
You said other tings come with it. Does being develepmentally delayed come with it?
Does having a irreguller heartbeat & limited lung capacity come with it,b/c I used 2 havce asthma but after I moved here in 96 Inever had another attack againB''H however I often wonder wether their all related


-------------------------
moshiach now!

Edited: 4/25/06 at 11:26 PM by tuna4ta
 
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