New Here, support needed

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
4
Reaction score
0
Points
0
Just wanted to say hi, I just came across this forum and it's so relieving to read some things from people who are going through the similar things...

I was properly diagnosed with E just a year ago and I've been seizure free for four months on Keppra. Now for no reason at all I had a cp today... I just want them to go away. I ended up in a ball on the groud with loads of people staring... I'm so embarrassed. Is this ever going to stop? Everytime I'm feeling positive and healthy this keeps happening. I have to go back to college tomorrow and I know I'll be fine but I just don't want to leave the house in case it happens again :-(
 
HI, Uber internet hugs from me!

I know how you feel. I was diagnosed just last week and My first public complex partial was definitely the odd experiance. I unbuttoned my shirt in the middle of a mall! I was not embarrased as I have an "I dont really care, we have all seen breasts before." and it's not like I havent done before under my own power. *we used to have a game to see how far we get into the mall slowly taking off clothing beofre we got kicked out*

but if you need anything. We are here. Questions on meds, bad days, great days. anything. Just drop us a thread!

luv
Rae
 
Really sorry that you are experiencing bad days.

My daughter too has tonic clonic seizures that put her down on the ground as well, with all watching. I have to say that she has been doing well by making nutritional changes. Have you considered causes, prior to medication, or looked into alternatives?
 
Thanks to Rae and Robin, it's nice to feel welcome :)

I'm quite photosensitive and mostly that's the cause of my seizures. About six months ago I had one that was out of the blue, my neuro reckons it was down to extreme tiredness. I guess that's why I'm so down about today's one. It came from nowhere and I can't uinderstand... I've never tried nutritional changes or anything, I don't know where to begin
 
Sorry to

hear about the embarrassing moment there, Killer. I do understand what that's like, I have had a few of them, too. I have a tendency to strip naked during my seizures--during the post-ictal phase, so my kids have seen far more of me than they ever should have.........and so have my neighbors! *blushing*

Just wanted to welcome you to CWE if I haven't already. I'm sure you're going to like it here. Feel free to ask whatever questions you want, we'll do our best to answer them......

Take care,

Meetz
:rock:
 
I know how you feel, I always worry about having a seizure at school. I've been pretty lucky with teachers who know quite a bit about epilepsy though.

I had a seizure during my psych class last semester. Pretty embarassing but, I try not to be embarassed about something thats out of my control. I hope things get better for ya
 
welcome, you have found a good place for comfort, support and information. I have been on Keppra since getting diagnosed a year and half ago at age 47. It does pretty well, but then again, for no reason, I will have a seizure. In fact, last Wednesday night I had 2. Even though I was home alone when it happened, it is mentally and emotionally damaging. I guess it's part of E that I will never get use to.
jenn
 
Oh how I know the frustration of seizures coming out of the blue....have you had your blood sugar tested? drops in blood sugar can trigger seizures.
 
Welcome k c!

I hope you feel better soon. Since you're going back to college today, maybe your seizure was stress-related, or connected to your preparations for going. It can help to keep a record of what's going in your life -- sometimes you can pinpoint a specific seizure trigger, and try and avoid it in the future. Since you're photosensitive, perhaps tinted shades might help, what with all the fluroescent lights that tend be in schools.

Best,
Nakamova
 
Hello KILLeR CoUCH and bdshakes,

I want to welcome both of you to our great forum. It was made by Bernard out of love for his wife Stacy. That love permeates all of CWE.

I have never been embarrassed by anything I do in my seizures. I have no control over my brain. My brain has the control. Blame it on your brain!! Do not be embarrassed. You have nothing to be embarrassed about.

I have had epilepsy for 60 years, now. One thing I remember, I was a teenager in high school. I got up to answer a question that the teacher asked. Then I blacked out. That was the last thing I remember. I was told that I was taken down to the nurse's office, 3 floors down. My brother was in the same high school. He had a car and he had to drive me home. I woke up and got sick and threw up over his brand new car. He was mad.
I was never told what else happened. Being a teenager, I was embarrassed.

Ever since I was 6 years old, when I was diagnosed, I told everyone that I had epilepsy. I only had abscence seizures until that incident at school. They all knew that I had epilepsy. When I went back to school, nobody mentioned it.

I was not worried about having friends, epilepsy is a part of me. If people cannot accept me for who I am then they were not my true friends. Plus, they know what is happening when I have a seizure.

About photosensitivity, in college, you are going to use a computer. Correct me if I am wrong. There are computers with glare free screens. I am using one now. It came with it built into it. I also use polarized dark shaded glasses.

I wish you well. What are you taking in college?
 
Just wanted to welcome you to the group. My daughter has tonic clonic and she's had several in public. She's on Keppra too, and has good success with it. Keep trying and hope things go better.
Hugs and prayers,
Leslie G.
 
Aww, everybody here is so lovely :D

I'm a third year physics student. I had a lab today that forced me to get out of the house and go in to college which I'm pretty glad of. It took my mind off everything and I feel much better for it!

I've gotta call my neuro on Monday, I only saw him two weeks ago and he wanted to up my dose of Keppra slightly but I felt so good about things I persuaded him to keep me as I am =/ you live and learn I suppose :rolleyes:
 
Just wanted to say hi, I just came across this forum and it's so relieving to read some things from people who are going through the similar things...

I was properly diagnosed with E just a year ago and I've been seizure free for four months on Keppra. Now for no reason at all I had a cp today... I just want them to go away. I ended up in a ball on the groud with loads of people staring... I'm so embarrassed. Is this ever going to stop? Everytime I'm feeling positive and healthy this keeps happening. I have to go back to college tomorrow and I know I'll be fine but I just don't want to leave the house in case it happens again :-(
I'm 48 and have had seizures for 16 yrs. The last two years have been spent getting my masters. It wasn't easy telling people in the cohort I had epilepsy but I'm glad I did. People can be supportive. Yes, I got extra tired sometimes but never wanted to give up. Seizures are embarrassing but hey I have to deal with it.

Good luck!
 
What area did you get your masters in, teacher? I assume it was education, but was it special ed, elementary ed or what?

Just curious.......I'm a sub myself, with the beginning of a master's in special ed, and my daughter is doing her student teaching right now....
 
masters

My master's is in education. I'm an elementary teacher and would have had to wait about three years before a pay raise. I also felt I was lagging in computer skills and new teaching terminology so I thought the masters program would be the way to go. Districts and gov. are always saying they want teachers to be better educated.

At present I'm on leave of absence from work because I had a seizure.
Enjoy the weekend,
 
Hi teachergreen, welcome to CWE. It was started by Bernard out of love for his wife Stacy. That love has permeated through out CWE.

I am glad all of you are going for your Master's degree. I know you will be successful.
 
Back
Top Bottom