new here ( hello)

[nana1]

I have had epilepsy for 52 years. I am not under control.

as my doctor says i may never get it under full control. I am on meds
of them every day. I have no warning when my seizures are coming on,

but when i come to i do now i have had one. I do have all kinds i am told,

but i do have shaking turn blue get sick roll eyes and er has to give me

oxgen to help me breath. Couple times while i was in er i came to and had very sore throat and asked why throat was so sore, they said they had to put tube down throat to help me breath.

On happy side i do read alot and sing to try to get my mind off this. When

I have a seizure around people i usually will not go back near them or that

place for months. I have had a couple in church and end up not going back

for a couple of months, but i first start going back by coming to choir, then to church, but i have to feel comfortable 1st. I feel like i have scared someone when they dee me have my seizure, so i will not go near them.
I had seizure when i was 4 on a train, i have never gone back to that place since i have been 4 years old.

nana

[RobinN]

Rough road for 52 yrs Nana. When I get sick after eating something I don't ever want it again either, so I can understand to a point about your not wanting to go back to the place where your seizures occur.

I don't have seizures but my daughter does. She is getting neurofeedback therapy, and it seems to be working ...(knock on wood)...

I hope you find CWE a comfortable place to share and to find new and interesting information. We have a sense of humor, and some great music to share as well.
Enjoy your stay.

[nana1]

I love music so i hope to find some real good ones. Thank you for saying hello!!!!!!!!!!!!!

nana

[Bernard]

Hi nana, welcome to the forum.

You won't scare anyone here. Make yourself comfortable at our "dinner party".

[skillefer]

Welcome Nana!

I know what it's like to feel self concious about the seizures. I don't have any warning when mine are going to hit either. I have grand mals (now they're called tonic clonics). So I end up flopping around on the ground convulsing, lips turning blue, and usually scaring people in the process. Since I'm a school teacher, I take the precaution of wearing a medical bracelet, as well as telling all my friends, and students that I have seizures, and what to do if it happens. I usually end up going back to places where I've had seizures, if for no other reason than to reassure the people that were there when I had one. I now have people at gas stations, grocery stores, coffee shops and other places that will actually tell me if I'm looking too tired and ought to get some rest. They know who to contact if I have a seizure, or where my contact info is. They know to roll me onto my side to help me breathe easier, and more importantly, they know that I'll be okay, that epilepsy is not something to be scared of. So Nana, I'm glad to hear that you're going back to church. Don't let seizures shrink your world. People are alot more understanding about seizures now, than they used to be. Also....have you considered getting a service dog? They have seizure assist dogs that can carry your contact info, help roll you on to your side, get help, and stay with you if you have a seizure. It might help. I'm glad to see that you're on the site. We're a really friendly group. So if you have any questions, feel free to ask. And if you really just need a place to vent, feel free to check out the padded room.

[nana1]

I really would like to get a dog. But i do live in a aparment and on 2cnd floor, so the dog would not have a yard and be able to go in and out and roam. I would not want to be cruel to the animal they should be able to run outside. I have grown up with cats and dogs and they always have had yard and room to run.




nancy

[skillefer]

Hmmmm.....well, since you say you live in an apartment, you could see about getting a smaller service animal. Not all service dogs are German Shephards or labs. I've actually seen a service dog that was a chihuahua. They were trained to go get help. Looked kind of cute in it's red service vest. Plus, apartments can't disciminate against service animals. Also, a friend of mine had a chihuahua that was actually litterbox trained. Strange but true... Just a thought....

[stilldancing_98]

Hello Nana, Wecome! I am glad to see you here. You can't scare any one here. I am living in an apartment to. Second floor. I don't care what it takes . Im gonna get a dog.I think if you walk them every day. You will be fine. And if you can't there are services. I live in WA state. Do you see a neurologist or epileptologist? I've had epilepsy for 33 years and I have seizures about like you. everything. lol

[nana1]

Hello stilldancing

I have a neuo. I have had epilepsy for over 50 years. I live in massachusetts. My landord is kinda not wantt anyone having animals in bilding. I do now by law i could have one, but i am still not sure. I am glad to be on site. I also have gone into kitchen site and another site just to vent. Boy do these site help alot.

nancy

[tinasmom]

Welcome Nana

I think that if your dog is a service dog, your landlord would have to allow it. Does your landlord refuse to rent to a blind person with a service dog? I guess that people would consider a seeing eye dog acceptable because they understand blindness. People still have a hard time understanding Epilepsy. Maybe you can research service dogs and just let your landlord know how helpful a dog can be.

[hawke86]

Welcome to forum nana1. I hope you enjoy your stay.

[stilldancing_98]

I was a manager of an apartment building in WA and this is the way it works here. If you need any kind of working dog. You do not have to pay a deposit .If the manager is being harsh about it have a letter ready from your Dr. And don't have a small Dog just for the apt. Ive done some research and they are measure to your size. They need to warn you protect you. I had one g. shepard take care of me on the cement. trained. I loved that dog.He belonged to somebody else.I dont think that you will have a problem. If you do let us know. One of us will help. Teresa

[Elaine H]

I have had epilepsy for 52 years. I am not under control.

as my doctor says i may never get it under full control. I am on meds
of them every day. I have no warning when my seizures are coming on,

but when i come to i do now i have had one. I do have all kinds i am told,

but i do have shaking turn blue get sick roll eyes and er has to give me

oxgen to help me breath. Couple times while i was in er i came to and had very sore throat and asked why throat was so sore, they said they had to put tube down throat to help me breath.

On happy side i do read alot and sing to try to get my mind off this. When

I have a seizure around people i usually will not go back near them or that

place for months. I have had a couple in church and end up not going back

for a couple of months, but i first start going back by coming to choir, then to church, but i have to feel comfortable 1st. I feel like i have scared someone when they dee me have my seizure, so i will not go near them.
I had seizure when i was 4 on a train, i have never gone back to that place since i have been 4 years old.

nana

Hi There
Welcome to this wonderful friendly and informative site, I only joined a few months back, but have heard from some lovely people, and it has been both reassuring, and enjoyable to talk to people who really understand.

I hope you find it as helpful as I have, you are like me, my epilepsy just cannot be controlled, and I think I've taken all the tablets that are out there, I had brain surgery in Sept 2000, I was seizure free for five wonderful years, I passed my driving test first time, got a great new job, and that was it, I used to talk about me with epilepsy as if I was referring to someone I used to know, then it came back in July 2005, and I am just waiting to have my second lot of surgery any time now.

Do you know what caused your epilepsy to start? I was a forceps delivery, and they caused a blood vessel to burst in my right temporal lobe. Fingers crossed that this time they can sort me out for goo, as I have just about had enough of it. Do you have an aura sometimes, or every time before a seizure. It would be great to hear from you, and I hope you enjoy your time with the people on this website.

Cheers

Elaine

[nana1]

Elaine
no i do not have aura`s at all, i only now i had a seizure after i had one when i come to. They have no idea what has caused these, we went all the way back in my family history and no one had it. 52 years of seizures is a long time but with no chance of surgery and only meds and not under control, hey that the way life is.

nancy

[skillefer]

Well....actually, just because nobody admits to having seizures doesn't mean that nobody in your family had them. My mother's uncle had a seizure when he was in his forties. The only reason my mom actually admitted to it was because the neurologist wanted to know. (She's very stereotypically asian sometimes......not wanting to lose face and yet having a great deal of respect for doctors.) Of course then again, it could be just a combination of recessive genes from both sides. Whe knows....as you said, hey, that's how life is.

[nana1]

Doctors and I did go all the way back ( i go all the way back to the pilgrims). we could not find anybody on any side. Course back in pilgrims days they may not of now what they were. When i have seen over 6 doctors and they all say the same thing. I just give them people names and birthdates and they take it from there. So at this time that why i say oh well that is life can`t change it>

nancy