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Nenne

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Hey everybody,

My name is Nenne, i have partial complex epilepsy sense the age of 7.
Im right now trying to make up my mind about having vns operation or not.
Im also up for brain operation but im not very keen on messing about in there :) so i think il rather put in the VNS, but im not sure, and thats why im here to maybe get some help to be able to decide what to do.

Anyway that was a description of the EP me, the other part of me is a student on half time, soon moving in with my boyfriend sense 3 years back (im a bit freaked out) Im a very positive person that can`t be depressed more then 5 min at a time :)

anyway so if somebody has any experience about the VNS i would be very happy to hear about it, both negative and positive.

Nenne
 
Welcome

:cheers:

Welcome to the forum Nenne. Many of our members have VNS experience, both good and bad. You should be able to find lots of info here. Just click on VNS in the tag cloud (home screen) or use the search functionality. You will also find links to other informative sites.

As far as the boyfriend goes, take it from the father of three grown up daughters, make sure you are ready for the big step. He will become your partner in your fight against E and you want to be sure. You didn't mention anything negative, so after 3 years I would guess that he is pretty supportive already.

Good Luck and visit often.
 
Hello again

Hey, thanks for the info! im not so sure i wanne see the operation in IRL, its a bit yuki :)

Concerning the boyfriend, yeah im pretty sure, he is good guy im not sure he realizes that i have EP thou, when i told him that im thinking of the VNS he search the net and called me up and was like "ehh i did not know ur where like that sick"

The problem with my EP is that it does not really show, i only cramp during night time and the guy sleeps like rock, and during day time i only have abstains attacks, iv had a couple of drop attacks but sense i get a pre warning i have always manage to stop them when he has been around. The only thing thats difference with me is that i sleep much more, i need my daily nap :) not so weird sense i cramp almost every night :)
But i guess its pretty normal to freak out when its getting serious and also i have to move pretty far to be with him so im worried about leaving my home.
 
Hi Nenne -
Welcome to CWE... If you don't mind, what other therapies have you considered besides meds and the surgical route?

As for the BF... being a mom, I would sit you down and tell you why you need to discuss your E with him before you move in, not after. The idea that it has never been discussed worries me a bit here.

Good luck with your decisions.
 
Hey Robin, thank u :)

I have not considered anything else, a couple of years ago they though about putting me on some diet but it never happened. And i dont even know if there is something else except meds or surgery. At least not where i live, i think they are mostly interested in putting me on as much meds as they can do :)
But my problem is that i dont react very well on meds, iv tried i think 5-8 different sorts and some im a allergic to and some i just dont respond to at all.

Right now im eating Lamictal but i think i might have become allergic to that also sense last 2-3 months i have developed some sort of rash, and thats weird sense i never had a rash before. But im not at home now so i cant go to the doctor until end of june when im back home again. So im hoping its not gonne get any worse the next few weeks. But i am bit scared last time it happend i was in the hospital for a month and i still have memory laps from that time.

yeah i know i need to talk to him, but i hate talking about my EP people get some kinda of funny expression in there face when u talk about it seriously and im not kind person that likes talking about EP, i dont even know anybody with EP. Or i did know somebody but she died in a grand mal. And it feels a bit weird to talk about it i dont even know what to say honestly. And im not afraid of getting dumped i just dont want worry him also, i got a hole bunch of people back home worried :)
 
Hi Bernard i did not see u wrote, i think i was writing respond to Robin in the same time :)

The fits are not very drastic anymore thank good, they got better 4-5 years ago, but the problem is the cramps during night time, i dont get any sleep so im constantly dead tired. And it just affects my life to much, and right now im studying half-time at uni and i really wanne do fulltime in IRL uni not like now that i do in on the net, i wanne meet people im sick of my flat! I feel a bit isolated. So im hoping that if the Vns works on me maybe i will have more energy! And i can do more stuff! im sick of my naps :)
 
I can understand how terribly frustrating and isolating this is.

I have wondered for some with sleep issues, if some of what they are experiencing isn't just a trained, or habitual pattern. I remember when I lived alone, miles from family and friends, I use to take a book or the paper to the couch, with good intentions of reading it, however knowing full well that I would just be falling asleep. This became a habit for me. However once I realized this, and faced it, I was able to change the habit and get on with more important things to me. I think when we realize what is not working for us, we can move on to that which does.

Do you think it is possible that you are not sleeping at night because you have replaced it with not sleeping at night? Do you think that it is possible that you are not sleeping at night due to your mattress, issues not dealt with during the day, stress, eating too late... Cramps at night make me think of my grandmother who had cramps in the middle of the night. My mother use to give her calcium, but I have since learned that she should have been giving her magnesium. Have you looked into any nutritional supplementation that might help you?
 
Hey Robin,

Iv tried most things when it comes to the sleep, even when i dont have the nap i dont sleep well, and sometimes if i dont have the nap it gets even worse sense im overtired when i go to bed. I really try to eat well, im addicted to fruits and vegetables :)
But it does not seem to get better, my doctor said that she does not think iv had a proper sleep for years sense the cramps intreupped my sleep. Not that i notice anything. I just know the next morning if i had a good night or bad night,. (if i have a lot of bruising it was a really bad:) )

I really try to take the studying on the Net as a fun thing so i "travel" right now im in Israel staying at my boyfriend and thats nice, But iv noticed that the weather makes me feel better of some reason.
 
I have heard that weather can be a positive for many medical issues.

So you are actually in Israel, or are you virtually travelling? (15 yrs ago this would have been an odd question to ask).

As for the sleep, I still think that habits are very hard to break. Somewhere I read that it takes 21 days of doing something to change an old habit to a new one.
 
Haha no im In Israel for real :) at least i think so with all this dust and heat :) And the people talking to me and me just looking and nodding confused...

You are right it takes time, thats why every-time i go back home or here i try to do things differently so il change things without notice. But my sleep just wont change, i tried not sleeping for a 2 months last autumn when i lived in Paris for 3 months but it did not do a difference except me being cranky during afternoons and evenings. I was thinking of taking sleeping pills, but i have a feeling that it wont work well with meds.
 
My husband was born in Haifa. I have yet to be brave enough to take my family there to visit.

Creating new patterns, and believing that they are going to be helpful is difficult. But we have also had a thread going here about how thoughts can actually bring on seizures. It would be interesting to see if your thoughts as you fall asleep are triggering your night time "cramps". Developing new thoughts would be rather difficult as it is happening during your sleep pattern. However, I know that Stacy, Bernard's wife, believes that creating a calm environment, relaxation, candle... has helped with her nighttime sleep.
Something at least worth trying for a month.

http://www.coping-with-epilepsy.com/forums/f27/how-many-people-practice-1022/#post11086

I can't find the other post , but I will keep looking

Perhaps breathing strips?:
http://www.coping-with-epilepsy.com/forums/f22/low-electrolytes-1284/index2.html#post19128

I do suggest, Epilepsy: A New Approach - what you can do for yourself.
 
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hey,

Haifa is wonderful, perfect weather great beaches and so on :) i would love to live there :) Instead im in the middle of the desert with no beaches but alot of dust. But israel is a cool place to be in.

I know that if u have a "bad" day its easier to get a fit or if u feel depressed.
In junior high i had loads of fits almost everyday (of some reason always before math haha) but when i started high school and started to get friends and feel good about my self my fits just stopped coming so often. They still come of course but i have noticed that if im unhappy or stressed i get them much more then if im happy and relaxed.

in Junior high i was almost hoping for them to come so i could go home. because of this i actually know how to make them come. But in one way its good it made me learn how also to get them to go away and recognizing the signs of them coming. That really pulled the number down as soon as i started having pre warnings.
 
Yes, from my understanding that is exactly what this book is referring to.
I do not get seizures, my daughter does, and she rarely has memory of what occurred prior to the event. I do know that since she has been doing neurofeedback, her self worth is higher, her studies have improved, her grades are inching up, her seizures have reduced dramatically, the "energy" surrounding her is more positive. All of this from balancing the brain functioning. Impressive to me.

I am glad that you are finding Isreal enjoyable, especially if you are considering moving there. (I am just assuming you are moving from elsewhere). To me it is impressive what has been achieved by such a small country.
For example:
http://www.freeman.org/m_online/jun04/koller.htm
 
Hey, yeah Israel has done some incredible stuff, but i guess u cant forget that what they had that most "new" countries did not have was that a big part of the people that moved here and founded Israel was well educated and young.

I like Israel very much, its very different from my home. sometimes im pretty confused. all this kissing on the cheek!!! But we said we would be her for 2 years and then move europe.

I have never heard about that treatment, i doubt that we have it back home. When it comes to EP treatment i think we are a bit into surgery or meds,

But it sounds great, its wonderful ur daughter feels better! Its so nice being next to somebody that just gets better and better.
 
Here's Some Help! (I hope!)

:hello: Nenne

I am not sure if I am following you correctly,
but Shalom - and welcome to CWE! There is
a Foundation in Israel if you are residing there
and you can go there by clicking on the logo
below and it will take you directly to their site.
I also have association and ties with them as
well. Shalom Chev'rim, L'hit rahot!

:cheers:

Eyal Israel Epilepsy Association



Note: Text in Hebrew, Arabic, and English
 
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Shalom Sharon.
Toda Raba!

It would be interesting to meet people with Ep here in Israel, maybe they have some of us here even in the middle of desert!

Lila tov from the Negev.

and hope u all have a Yom tov tomorrow
 
Nenne, have you been tested for sleep apnea?
 
Bernard said:
Nenne, have you been tested for sleep apnea?
Click to expand...

Nenne:

I believe they have Sleep Apnea Centers
in Old City Jerusalem & Tel Aviv and I'm not
positive, maybe in Bethesada.

I used to have a very dear Pen Pal of mine,
in the Old City in Jerusalem, for years; and
we were connected via through a friend of
mine, a Rabbi, who directed me to IBM (a
huge Corporation in USA) - and they connected
me with her ~ unfortunately she and her family
are all deceased in early 80s; when all the
bombings were going off (Arabs, Jews, and
Christians - in the Old City Jerusalem - during
that span).

She was supposed to come over here and join
with me and we were to attend College (now
a University) together, but it never happened,
and I got married.

Trust me - we wrote like PIGS! *laughs* English,
Hebrew - and she taught me some Arabic, so I
still have some of the letters, the photos - and
I almost went over there for 2 weeks; but due to
bombings - that got all became axed.

But the strange part of it all back then in the 70s
was, it took anywhere from 1-2-3 months for the
mail to arrive, and sometimes, I would get one piece
of mail before the other! (IE: June 28, 1977 first,
and then get several weeks later April 11, 1977?
Oh, the loveliness of the Postal Service / Par Avon)

:D

Where I grew up, is very heavy Jewish community just
east and north of me. I'm half Jewish and half American
Indian. So without even knowing this (I learned my real
nationality years later - I'm adopted); I learned Hebrew
and Yiddish. The Greeks were far north from us; but
today, they're a few miles away from me - and I know
and understand some Greek. My area is one area where
you could "almost" be going from one "Country" to another
without having to leave the USA; because of the heritage
and strongholds of the Scottish, Irish, Greeks, Jews, Africans
(all ranges from Africa), Germans, Dutch, Indian, Cuban, etc.

Amazing isn't it? Even the community area is designed just
like "Back Home" in their own home Country. As for the Food,
don't get me started on that!

<------- can make a mean Matzo ball soup all from scratch!


L'ila tov from the Sunshine State of Florida in USA!
;)
 
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