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Hi All, My story is a bit different and long, so please bear with me. I am 29 years old and have been seizure free since I was 9. I had a minor head trauma incident when I was 8 years old, tripped on a rock while playing in the backyard during summer break. When school started in September, my parents noticed that I was acting weird on a few occasions. After EEG test and a few other tests, my parents and the neurologist came to the conclusion that I have epilepsy. I took Carbamazepine and only Carbamazepine for nearly 10 years (reducing the dosage as I grew older), and while I was on Carbamazepine I did not have any seizure episodes. My EEG tests were normal after 3 years into taking Carbamazepine, and have been normal since. I stopped taking Carbamazepine when I was 17, and my EEG have been normal and I have been seizure free as well since then. I met the love of my life in 2019 and I have told her about my story. The only thing is that she is afraid that I might relapse in the future, 20 or 30 years from now. I have explained to her numerous times that I will not. I firmly believe so too. I told her that epilepsy is not black and white, and every epilepsy patient is different from one another and needs to be examined on a case-by-case basis. She recently decided to do a google search on epilepsy and is hell bent on believing everything WebMD or other website has to say. I am not saying these websites are offering the wrong information but I do believe that epilepsy needs to be examined on a case-by-case basis, and these websites tend to generalizes the causes, treatments and consequence of epilepsy, and also tend to be over-inclusive. She has been in pain and in tears for the last few days because she thinks I am not completely cured and she will lose me one day to epilepsy, and she would rather break things off right now because she doesn't think she can deal with the emotion pain 20 or 30 years from now if it does happen. I told her that, the chance of relapse is incredibly low and can only happen if I experience another head trauma. Even if I do relapse when I am 50 years old I can still control the seizure with medication. She thinks that medication will have side effects and I will memory loss from these side effects. I have tried to calm her down in the last few days by telling her that we can go to a post-traumatic epilepsy specialist and have the specialist explain to her the details rather than reading straight from the website. She is very emotional right now and is not receptive of that idea. Do you guys have any ideas or suggestions? I really believe that I am cured even though the percentage is really small. Thank you!

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Hi, Thank you for posting.

Submitted by Anonymous on Wed, 2020-01-08 - 15:09

Hi, Thank you for posting. Congratulations on being seizure free since you were 17, that’s fantastic news and we wish you many more years of seizure freedom ahead! As you stated epilepsy and seizures can affect everyone differently and should be evaluated on an individual basis. We cannot say for certain if you will have a breakthrough seizure or not in the future, so it’s important that your discussing with your doctor and any additional concerns you may have. There are many factors that may improve the chance of being seizure free, such as, having a positive response to the first 1 or 2 seizure medications tried, meaning that seizures do not recur and the person is seizure free, a normal neurological exam and EEG, and more. More than 50 out of 100 children outgrow their epilepsy. Twenty years after the diagnosis, 75 out of 100 people will have been seizure free for at least 5 years, although some may still need to take daily medication. https://www.epilepsy.com/learn/about-epilepsy-basics/will-i-always-have-seizures Additionally, treatment and how the body may react to certain medications varies for each individual. Seizure medicines may cause unwanted side effects in some people, however not everyone who takes seizure medication will experience unwanted side effects. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it. For additional information about seizure medications and side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsAs you mentioned talking with your doctor, or epilepsy specialist about your epilepsy and any concerns you or your partner may have may be very beneficial for you and for her as well, if she's receptive to this in the future. It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsSometimes it’s helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi, Thank you for posting. Congratulations on being seizure free since you were 17, that’s fantastic news and we wish you many more years of seizure freedom ahead! As you stated epilepsy and seizures can affect everyone differently and should be evaluated on an individual basis. We cannot say for certain if you will have a breakthrough seizure or not in the future, so it’s important that your discussing with your doctor and any additional concerns you may have. There are many factors that may improve the chance of being seizure free, such as, having a positive response to the first 1 or 2 seizure medications tried, meaning that seizures do not recur and the person is seizure free, a normal neurological exam and EEG, and more. More than 50 out of 100 children outgrow their epilepsy. Twenty years after the diagnosis, 75 out of 100 people will have been seizure free for at least 5 years, although some may still need to take daily medication. https://www.epilepsy.com/learn/about-epilepsy-basics/will-i-always-have-seizures Additionally, treatment and how the body may react to certain medications varies for each individual. Seizure medicines may cause unwanted side effects in some people, however not everyone who takes seizure medication will experience unwanted side effects. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it. For additional information about seizure medications and side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsAs you mentioned talking with your doctor, or epilepsy specialist about your epilepsy and any concerns you or your partner may have may be very beneficial for you and for her as well, if she's receptive to this in the future. It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness  ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsSometimes it’s helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi, Thank you for posting. Congratulations on being seizure free since you were 17, that’s fantastic news and we wish you many more years of seizure freedom ahead! As you stated epilepsy and seizures can affect everyone differently and should be evaluated on an individual basis. We cannot say for certain if you will have a breakthrough seizure or not in the future, so it’s important that your discussing with your doctor and any additional concerns you may have. There are many factors that may improve the chance of being seizure free, such as, having a positive response to the first 1 or 2 seizure medications tried, meaning that seizures do not recur and the person is seizure free, a normal neurological exam and EEG, and more. More than 50 out of 100 children outgrow their epilepsy. Twenty years after the diagnosis, 75 out of 100 people will have been seizure free for at least 5 years, although some may still need to take daily medication. https://www.epilepsy.com/learn/about-epilepsy-basics/will-i-always-have-seizures Additionally, treatment and how the body may react to certain medications varies for each individual. Seizure medicines may cause unwanted side effects in some people, however not everyone who takes seizure medication will experience unwanted side effects. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it. For additional information about seizure medications and side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsAs you mentioned talking with your doctor, or epilepsy specialist about your epilepsy and any concerns you or your partner may have may be very beneficial for you and for her as well, if she's receptive to this in the future. It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsSometimes it’s helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

How to Explain?

Comments

Hi, Thank you for posting.

Submitted by Anonymous on Wed, 2020-01-08 - 15:09

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