Overcoming Fear

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Topic: Living With Epilepsy - Adults

I was diagnosed just under a year ago;

I've had 5 tonic clonic seizures since then.

Two of them in public, during class, while I was trying to be a good student.

But I'm a bad student now. I feel myself giving in to fear.

I feel myself giving in to sadness.

Frankly, I don't feel like myself at all.

To all those who have lived with epilepsy longer than I have:

How do you do it? How do you muster the courage to step outside each day? How do you fight back if the doctors still can't tell you why this began and triggers are hard to discern? Where do you find your strength?

Comments

Hello. I am so sorry that you

Submitted by Kandreas81 on Mon, 2015-03-16 - 17:13

Hello. I am so sorry that you have to be a part of this struggle. I won't say it gets better... But there are things that you can do that will help a little. I inform, in detail, all my friends and family, and anyone that I will be around, everything about my seizures. When they are likely to occur, what they may look like, and what to do if I have one in their presence. This helps some. I also have a medical ID bracelet with 2 phone numbers to family members and brief medical info. This makes me feel less fearful in public cause I assume they will see my bracelet and call those numbers. And I see an Epileptologist (spelling?) and not just a neurologist, cause I feel they are much more helpful and in tune with seizure specifics and potential treatments. Then, this is just me, but I pray! :)

You start by controlling what

Submitted by Anonymous on Tue, 2015-03-17 - 13:57

You start by controlling what you can. Which means taking care of the things you can. By not going out and feeling sorry for yourself you are not controlling your life. You are letting epilepsy control what you do and what others think of you. Do people with other ailments let their issues bother them or do they just keep on keeping on?If this were a heart ailment would those people accept you ? What about if it were diabeties? Everybody have something that they have to deal with. You posted you have only had epilepsy for less then a year. well a year after I was diagnosed I still had seizyres. Not only in public but in school. My seizures looked like grand mal (tonic clonic) but I was fully concious and could see, hear and undersyand what was being said. I heard friends saying they didn't want to be arround me anymore. I heard the girl yelling for someone to get the nursh while she put her jacket under my head. So yes I do know what it's like having them in public. I also know what friends can say but not mean. I stayed away from some of them until they came to me. I then let them know that a seizure is a disability that can't be seen. Bad eyes are a disability. do they stop being friends with them. what about a person that uses a hearing aid. Any disability that can be seen is accepted because it can be seen. Your epilepsy can't be seen. A seizure doesn't last long. Take away the time during your seizure and look at the time you have been arround. That time period would be a blip in time. Which means accept the face that until you get the correct medication and dosages set you may have a problem but you control your problem and don't let the problem control you.If yo uwere a good student then keep being a good student. If you excelled in a subject then keep that going. If sprots was something you like then keep playing. You have been living with epilepsy for less than a year. I have been living and dealing with epilepsy for 50+ years. I haven't had a convulsive seizure since 1970. I still have a few simple partial seizures a month but those last seconds. The same seizures lasted 2-8 minutes 10-+12 years ago. Some people can grow out of it. Others can get seizure free and if tests look good that can get off medications and never have another seizure. I know my cousin did that. Others can get seizure free but they still need their medications.You have to learn how to control your stress, and yess your feelings about something you hav no control of.You are on the site that can give you a lot of knowledge. Start in the get help section. Epilepsy 101. follow that with triggers. types of epilepsy, types of seizures. If you have questions come to the forum or even call the 24/7 help line. There is also a chat section. I hope this helps and you control your epilepsy and get seizure free Joe

You start by controlling what you can. Which means taking care of the things you can. By not going out and feeling sorry for yourself you are not controlling your life. You are letting epilepsy control what you do and what others think of you. Do people with other ailments let their issues bother them or do they just keep on keeping on?If this were a heart ailment would those people accept you ? What about if it were diabeties? Everybody have something that they have to deal with. You posted you have only had epilepsy for less then a year. well a year after I was diagnosed I still had seizyres. Not only in public but in school. My seizures looked like grand mal (tonic clonic) but I was fully concious and could see, hear and undersyand what was being said. I heard friends saying they didn't want to be arround me anymore. I heard the girl yelling for someone to get the nursh while she put her jacket under my head. So yes I do know what it's like having them in public. I also know what friends can say but not mean. I stayed away from some of them until they came to me. I then let them know that a seizure is a disability that can't be seen. Bad eyes are a disability. do they stop being friends with them. what about a person that uses a hearing aid. Any disability  that can be seen is accepted because it can be seen. Your epilepsy can't be seen. A seizure doesn't last long. Take away the time during your seizure and look at the time you have been arround. That time period would be a blip in time. Which means accept the face that until you get the correct medication and dosages set you may have a problem but you control your problem and don't let the problem control you.If yo uwere a good student then keep being a good student. If you excelled in a subject then keep that going. If sprots was something you like then keep playing. You have been living with epilepsy for less than a year. I have been living and dealing with epilepsy for 50+ years. I haven't had a convulsive seizure since 1970. I still have a few simple partial seizures a month but those last seconds. The same seizures lasted 2-8 minutes 10-+12 years ago. Some people can grow out of it. Others can get seizure free and if tests look good that can get off medications and never have another seizure. I know my cousin did that. Others can get seizure free but they still need their medications.You have to learn how to control your stress, and yess your feelings about something you hav no control of.You are on the site that can give you a lot of knowledge. Start in the get help section. Epilepsy 101. follow that with triggers. types of epilepsy, types of seizures. If you have questions come to the forum or even call the 24/7 help line. There is also a chat section. I hope this helps and you control your epilepsy and get seizure free Joe

You start by controlling what you can. Which means taking care of the things you can. By not going out and feeling sorry for yourself you are not controlling your life. You are letting epilepsy control what you do and what others think of you. Do people with other ailments let their issues bother them or do they just keep on keeping on?If this were a heart ailment would those people accept you ? What about if it were diabeties? Everybody have something that they have to deal with. You posted you have only had epilepsy for less then a year. well a year after I was diagnosed I still had seizyres. Not only in public but in school. My seizures looked like grand mal (tonic clonic) but I was fully concious and could see, hear and undersyand what was being said. I heard friends saying they didn't want to be arround me anymore. I heard the girl yelling for someone to get the nursh while she put her jacket under my head. So yes I do know what it's like having them in public. I also know what friends can say but not mean. I stayed away from some of them until they came to me. I then let them know that a seizure is a disability that can't be seen. Bad eyes are a disability. do they stop being friends with them. what about a person that uses a hearing aid. Any disability that can be seen is accepted because it can be seen. Your epilepsy can't be seen. A seizure doesn't last long. Take away the time during your seizure and look at the time you have been arround. That time period would be a blip in time. Which means accept the face that until you get the correct medication and dosages set you may have a problem but you control your problem and don't let the problem control you.If yo uwere a good student then keep being a good student. If you excelled in a subject then keep that going. If sprots was something you like then keep playing. You have been living with epilepsy for less than a year. I have been living and dealing with epilepsy for 50+ years. I haven't had a convulsive seizure since 1970. I still have a few simple partial seizures a month but those last seconds. The same seizures lasted 2-8 minutes 10-+12 years ago. Some people can grow out of it. Others can get seizure free and if tests look good that can get off medications and never have another seizure. I know my cousin did that. Others can get seizure free but they still need their medications.You have to learn how to control your stress, and yess your feelings about something you hav no control of.You are on the site that can give you a lot of knowledge. Start in the get help section. Epilepsy 101. follow that with triggers. types of epilepsy, types of seizures. If you have questions come to the forum or even call the 24/7 help line. There is also a chat section. I hope this helps and you control your epilepsy and get seizure free Joe

It is what it is and you can

Submitted by nightfighter@nc.rr.com on Mon, 2015-03-23 - 17:34

It is what it is and you can see just how each person has been dealing with the disorder. One way to calm people down is to inform them about Epilepsy. They need to understand that this is a physical not a mental disorder. You might want to use the term "Seizure Disorder" rather than "Epilepsy" but that will be up to you. I have seen Joe, Jazz & Mrs. Carlton on here enough and I respect their input. Now let's add Samantha to the crowd. My own advice is to let people know you as you not the epileptic. They need to know your personality rather than a label somebody has placed upon you. Please remember to live each day the best way you know how to do it. Do not let this disability take things away from your life. Yes your life will modified a bit due to the situation but do not let the seizures control you. Please take care.Michael