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Epilepsy and psychogenic

Hello,
My name is jeremy, I was diagnosed with epilepsy back in 2016, I was also diagnosed with psychogenic ones as well, and now it looks like I have some new ones, i am getting some tests done soon. I was wondering if anyone else is going through the same thing as I am. I am trying to find other people I can relate to, I am the only one in my family that has this, everyone tries hard to understand it but they dont know what it's like because they dont have them, all I can say is I am glad I have the support that I do, i am trying to reach out to other people who knows what it's like to go through what i am going through.

Comments

Hi Jeremycarew, Thanks so

Hi Jeremycarew, Thanks so much for sharing your story.It’s important to remember that you are not alone. However,we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. We are happy to hear that you have a good support system in place. Sometimes it’s helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline   It is 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-tools It’s also important that you continue to follow-up with your healthcare team to express your concerns, determine what is best for you and if you experience any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVis... Learn more about PNES & challenges with epilepsy, here: https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-e... 

Thank you, I need help with

Thank you, I need help with finding more people to connect with, as I I am the only one in my family who has it 

Hi Jeremy my heart goes all

Hi Jeremy my heart goes all out to you. I hv gone thru similar hell as my son now 21 is also suffering fr this for the past 18 years from age 3. He is having auras..jerking on the right hand before the seizure sets in. The auras will occur 2 or 3 times per day & if it is not strong aura than it will goes off.The past 5 months from March 2019 the auras been getting more & more frequent.We have done pet scan & eeg vtr just last month hoping to identify for a clue that cause the epilepsy but results shows idiopathy & we are at a complete lost now.To make matters worst he is starting to lost confidence in himself & we are so worried that depression may set it too as he broke down few times begging when can this goes off & is there no cure for it. He is on epilem for the past 18 years & looks like over the years its getting to be worst instead of out grown it as what we were hoping for. Its feels good to share my worries wth someone & BTW how old are you

Hi Jeremy, my heart goes all

Hi Jeremy, my heart goes all out to you.My son now 21 yo is also suffering from epilepsy for the past 18 yrs from age 3.He is been having auras almost every week ie jerking of his right hands. The auras will last few seconds depending on how strong it is before it explodes into a seizure. If it is mild aura than it will goes off but the auras recently from Marc 2019 is happening two or three times a day & we as parents are in complete lost.He just did a brain pet scan & a vtr eeg  last 2 weeks & was hoping that it will show some sign what causes the epilepsy but unfortunanetly its idiopathy which is the worst with no conclusion.We are now very worried that depression may sets in for his age as he is begging when this can end & how he wish he can leads a normal life like his friend.BTW how old are you if you don't mind my question to know of the feelings of a 20+ men tqvm

Thanks so much, and I am 27,

Thanks so much, and I am 27, I am going to get an mri done and eeg done next month. It gets really hard at times cause I see how much stress I put everybody in but I also have a great support system, that's the main key to have for someone going through epilepsy. Show them love and support and that's all they want, also going to talk to someone like a psychiatrist is good to, I am currently waiting on getting one. It also helps to give them there space when they need it to. Just make sure you are letting them know that you are there for them. Are they in a relationship? The only reason I ask is cause my drs look at my spouse for answers in my sleep and it helps them out to.I hope everything is ok with you guys, let me know if you need any advice or anything my email is in my story. 

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