Newbie

[Necie]

Good Morning All
I am new here. Here is a little about myself.. My name is Necie I am 41. My seizures started our of the blue almost 5 years ago. I have been on lots and lots of different meds in that time. I am on the highest dose of Trileptal and Lamectal they will allow. I also had a VNS put in 9 weeks ago. My seizures still are not controled.
I could go on and on but I wont. I will close for now. Just wanted to say hi to every one.And hope all is well.
Necie

[ashmstng]

Hey Necie!
Welcome here! I hope you like it and enjoy it. You will meet alot of nice people. Sorry to hear about your seizures just starting 5 years ago. Mine started at age 3. You just have to keep trying just like. I am not stopping and I hoping next month is a help. I am having brain surgery. I have the VNS also. Give it time. Some people it work for and some it dont. It didnt work for me. I had it since 2002. You have had it only 9 weeks. They will change the settings to see what works better for you. And hopefully it will work for ya. Well, I hope you the best.

[Bernard]

Hi Necie, welcome to the forum.

Make yourself at home here.

[paradise survivor]

Wow seeing your post is like dejavu for me and my 'story' minus the surgury-I'm a little paranoid about 'cracken' the egg so to speak. But I do want to tell you to hang in there! I too went thru the med tsunami but after four years or so I ( not recomending only stating my own case) gave up the med roller coaster since I had more than my share of side effects. To me they were worse than the events. Now I concentrate on the early warnings that I have learned to recognise and take my events as they come. Overall the events are somewhat less than before occasionally more but I no longer give E the power it once had in my life. There are no guarentees in life so I do my best to make each day upright and keep moving ahead. Glad you found us!!

[RobinN]

Hi Necie - WELCOME to CWE!
My daughters seizures began at the age of 14. We tried meds and they didn't work. She said she would rather have the seizures than the side effects

We are now doing a combination of neurofeedback, vitamins and mineral supplements, a strict nutritional plan, and bio-identical progesterone. Something is working because she has reduced her episodes from 5 in Jan, 6 in Feb, 2 in Mar, and a very very mild one this month. I am writing a diary of her treatment which I have linked in my signature, if you are interested in knowing more about neurofeedback. It is non invasive.

[Necie]

Hi ashmstng,
Good to meet you. The reason why I am frustrated with my VNS is because if it doesnt work I have no other choice but pills, which alone are not controling my seizures. I cant get the surgery because 2 years ago I had a bleeding anurisum(simple partial) on my brain and had it removed. So they said they could go in my brain but there was no way for sure to know if they could do the surgery because I have a plate on the left side of my head. And I told my nuro that if they werent sure they could do it before they cut me open I didnt want it done.Hope to hear from you soon. Necie

[Necie]

Hello Paradise Survivor,
You sound so upbeat and have control of yourself. I wish I was like that. At one point I did quit taking my meds and boy for me it wasnt good. So I started to take my meds again. I have a VNS now,9 weeks ago. Nothing good has come from it yet. I know it will take time. But damn am I tired of waiting already. I hope that here I will meet some nice people and be able to deal with it better. Good talking to you. Necie

[BuckeyeFan]

Ah, someone who uses my favorite emoticon. Join us for a cup of coffee/cocoa/tea anytime. This is a great place to relax and enjoy it. I am having a cup right now.

Welcome to our house. I have a few years on you, but luckily am fairly well controlled by meds (phenytek and keppra). I am almost 47 with seizure since age 20.

Later,
Buckeye

[paradise survivor]

Hey Necie, Thanks for the compliment! I gotta admit I had a blackout on Monday and 'woke' to my dog standing on his hind legs crying at me. Had to sleep it off for several hours and still felt out of it. Believe me, I hate it when it happens but a few years back I had a reaction to some prescription cough med and ended up blind for about 3 weeks including a 10 day stay at the hospital! I decided then that that was way worse!!Soo the moral of the story is...could be worse. Happy to report that when my daughter got married last May not only did I 'see it' but I remained upright thru the whole day We like when that happens. Hang in there and if I can help just let me know

[brain]

Necie!

Welcome to CWE! I can understand
about seizures being poorly controlled,
I'm in the same boat and I feel your
pain! Having been born with this, and
now 46 years old, hey wait a minute,
I take that back, I'm forever 21!



I've been through it all 60s, 70s, 80s,
90s, and 2000s. I've had my fill of
N E U R O-Land. *burp*

But the issue here is, they are doing all
they can to help those intractable and
refractory (actually both terminology is
really the same thing), and the good
news is, what deemed impossible, has
become possible in a couple areas now,
in dealing with uncontrolled seizures
in Neurosurgery and its outlook is quite
promising with good results of seizures
being reduced, minimized, while a few
isolated cases had no changes, but the
majority of them showed great improve-
ment! So there's hope out there and
the outlook is beginning to look brighter
and brighter.

[tinasmom]

Necie -
So glad you are here. You will find a lot of support here. So sorry to hear that your seizures are uncontrolled.

[Necie]

Good Morning paradise survivor. Just wanted to say that you seem so confident. My daughter will be graduating the end of may and I hope I can stay upright during the ceremony. My daughter says that it will all be good. I sure hope so. All the kids know who I am and dont want to embarass anyone especially her.
Necie

[paradise survivor]

Hey Necie, One thing my daughter taught me was that I was not an ebarrassment to her....at least not durring an event, maybe other places and other times but not durring. She has become an amazing woman ( I take full credit - flaws are due to her father-just kidding) I think you will do fine at the graduation, and if you feel something coming on look for a soft landing! Congrats on your daughter's graduation-I know you must be sooo proud!!

[skillefer]

Hi Necie! Welcome to CWE. We're a real friendly group, so feel free to ask any questions.