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recall92

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Hi everyone. I was diagnosed with epilepsy 10 weeks ago. I just started meds 10 weeks ago as well. (Epilim but I think it is called Dilantin in the States). I have had epilepsy for about 3 years. It has gotten worse last year and this year. I have had simple partials and complex partials. Only 1 tonic clonic and it happened about 10 weeks ago. I have about 4-7 complex partials a week. Since I have had a tonic clonic I really avoid social life and am really worried about it happening infront of people. I am just wondering what people have done to overcome this problem of avoiding social life. How long has it taken for people to become seizure free? Thanks :) Btw I'm 22 years of age and love to play sports
 
Hi recall92, welcome to CWE!

Everyone has a different story when it comes to epilepsy. I had my first seizure (a tonic-clonic) ten years ago, and am basically seizure-free as long as I am on the meds. It took me a while to get used to the idea of being on meds, so I've tried a few times to go off them (under doctor supervision) but with no luck. As far as the social part -- it probably took me a year to get over the fact that I was flailing about in public. For health reasons I still get bummed if I have a t-c, but the social part doesn't phase me in the least. It's partly because I know the drill by now, and my friends & family do too. And since I'm unconscious the whole time and can't remember what happened, it doesn't embarrass me.

I think the first few months after a diagnosis are hard in a particular way as you try to get a handle on the unknowns -- how is your brain going to behave, how are the meds going to effect you, how are the people around you going to react. One of the best things you can to do is to be proactive about your health, and get as much information as possible. Coming to CWE is a great start. :)

I hope you feel free to explore all the different forums, ask plenty of questions, and chime in and vent as needed.

Best,
Nakamova
 
Welcome to our world! This really is a great place for information, support or just venting. I got diagnosed 2 years ago. I have simple and complex partials. In the beginning, before meds, I had seizures at work on regular basis and no one would know...I joke, how weird am I that no one that something was off? LOL
I am on Keppra and have had my levels adjusted several times due to still having seizurezs. My last seizure was March 7th. My close friends know about my seizures and what to watch for and I do have some photosentivity issues that keep me from going to movies, concerts etc like in the old days! It is a process of getting yourself use to it, getting to where you talk about it and getting on with your life. Even after 2 years, I still have issues about it. Right now, one of my friends wants me to go with her to church retreat and I am freaking out about it!
Seizure free....I struggle with that question with each seizure I have. I get frustrated when I met people whose seizure have been "in control" for years and I feel great if I can do 6 months. E is so wierd, just no one set answer and you have to figure out what it all is for you and your situation.
jenn
 
Hello! And welcome to CWE. :)

I have tonic clonics. :) Have I had them in public? Yes...
They can be very frightening to watch. So, I tend to be up front and let those who might see it (such as colleagues and students...yes, I'm a teacher) what might happen, and how they can help me if it does happen. You'd be surprised. I have discovered that the majority of people actually handle it fairly well if they know what to expect and know what to do to help. :)
As for being seizure free....still working on that one. :) Pregnancy kind of threw that for a loop. Gotta love fluctuations in hormone levels... :)
 
Recall92, I had a similar experience. I've suffered from simple partials since I was about twelve but was only diagnosed a couple months after my 18th birthday. I'd actually had grand mals/tonic clonic's before I was diagnosed but it was put down to severe stress, & I didn't really worry too much because I was told it was panic attacks....Hmmm.
I think I probably worried about going out when I was first diagnosed but I guess I was very lucky, I have an amazing other half, & brilliant flatmates that looked after me.
Are you from England btw?
 
no i'm actually from New Zealand. Thanx everyone for the replys. It's really nice getting to talk to people who have experienced this problem. With me I guess I am just embarrased being out with some friends in a shopping mall then it happens. Don't really want to embarras them. Or worried I might have a seizure in front of a girl and shes going to think ""Hm this guy is so not my type". When it happens I am gone for about 2 mins. My eyes are wide open and I rotate my left arm for a few secs. I also lip smack. Any ideas on how to get of being paranoid/worried. When I'm around people I have in the back of my mind that a complex partial is going to happen. Thanx :)
 
Some people find it helpful to see a counselor/therapist to deal with the stress/anxiety about epilepsy. But I would give yourself some time. It's only been a few months.
 
I would love to live in NZ.
You won't embarrass them, & as for girls, If they feel that way then they aren't worth your time.
If your anything like me sites like these really help, you get to talk to people that have gone through alot of the same things.
I know a few people that saw a therapist & it really helped them. Speak to your doctor he may be able to put you in touch with someone.
Im not really sure how NZ healthcare works though :ponder:
 
Hi, Recall.

I have complex partials, and sometimes during them I will do really nutty stuff, including saying awful things, pushing buttons I shouldn't, or taking all my cloths off. So far it's either been in private or just among friends. I worry I'll do something crazy in public, too. I just pray it's around people I'll never see again, no one has a camera and I don't end up on You Tube, or I'm not arrested.

In the end I just try not to worry about it. If it happens, it happens, and I'll try to treat it like a teaching moment. Or if I'm arrested, point to my medic alert braclet!!!!
 
Hey thank you everyone for the help. Well I have been reading a book called "Coping with Epilepsy" Something I really like from that book is how it talks about "Accepting epilepsy" I have just accepted it. I use to get worried alot thinking "i hope it's not going to happen here (when in a public place)" and it was constantly on my mind. Since I have accepted it I just don't think about it as much :) It will happen in front of people but I'm not going to let it control my life. If it happens and people don't want to be around me then oh well they were not really friends in the first place. I have only been on meds for 2 months so I still have options and just hope I can get it under control. Thanx everyone for the replys :)
 
recall92 said:
Since I have had a tonic clonic I really avoid social life and am really worried about it happening infront of people. I am just wondering what people have done to overcome this problem of avoiding social life. How long has it taken for people to become seizure free? Thanks :) Btw I'm 22 years of age and love to play sports
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Hi recall, I am glad to meet you. I was 6 years old when I was diagnosed. I told everyone that I had epilepsy.

I just did not think about avoiding social life. I figured that my friends would accept me the way I was. If they did not, then they were never really friends. I am glad that you like sports. What sports do you enjoy?

I have tonic clonic's too.
 
Rugby! Really want to get back into it but doctor said to hold off for now. It maybe because I have complex partials and simple partials as well. I have about 4-7 complex partials a week.
 
Hey Ruth how often do your tonic clonics occur? And do you get complex partials. If so how often?
 
My tonic clonics do not occur to often. I have absence seizures quite often. I just had an atonic seizure, yesterday.

I have not figured out what the complex seizures are. I get used to one set of words, then the medical community decides to add more. I have read and studied them, but I keep forgetting what each one means?
 
Welcome and I agree with the above statement real friends accept you as you are. I only have a few friends but they except me as the over talkative twitchy person I am and I except them as they are. I hope yo feel very welcomed and accepted here.

John
 
Hi Recall, welcome!
I'm new to the big E as well and what has helped me is to confide to my closest friends so I know they will have my back if something should happen. Seems to me that just having that "safety net" helps me feel more relaxed in social situations and so far I have only had one in public (luckily I dont remember, so its hard to be embarrased lol)

I dated a young man when I was in my 20's who told me he had E. I didn't know anything about it so I expected him to drop in full convulsions, so when he would space out and smack his lips and twitch, I assumed he had tourettes LOL. The thing is, it didn't phase me whatsoever. He was a strong man who was kind and intellengent and that overpowered any twitching. Good luck to you and please keep us posted on how you are doing!
Sunshine
 
When I was about 20, I was dating a great guy. I did not tell him about my epilepsy. I was afraid he would quit dating me. He saw me have a seizure while he was driving the car. He panicked and pulled over and asked me what was wrong. I told him I had epilepsy. That did not make any difference to him. We have been married for over 40 years now.
 
aw that awsome Ruth :). Hey you have such an awsome attitude. I really need to get one like yours! I guess I get on top of things in terms of accepting but when it happens it's a different story. For example yesterday I was walking to class at Uni. I had a complex partial ended up some where 2 mins away and was talking rubbish to some random person. I don't want to avoid hanging out with people and having fun its just that anonying feeling of "it's gona happen"
 
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recall92 said:
I don't want to avoid hanging out with people and having fun its just that anonying feeling of "it's gona happen"
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Hi Recall, thank you for the compliment. This forum helps me have a positive attitude. I have always had one. This forum was made out of love for his wife Stacy. That love permeates throughout the whole forum.

Endless, I am 67 years old and my husband is 69. No single brothers, sorry.

Recall, I was diagnosed when I was 6 years old. I told everyone that I had epilepsy. All of my life, I have had a positive attitude. That really helps you get through the tough times. I go out with my friends and always have. My neighbors accept my epilepsy and I have friends in my neighborood.

I feel that if they get upset because I have a seizure then they are not my friends. The other day, I was out with my friends and had a seizure. They helped me and brought me home. Then my husband and son helped me.

Go out with your friends and have a good time!! Do not even think about your epilepsy. Just have a great time.
 
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