Temporal Lobe Epilepsy

Hi, Thank you for posting it, it sounds like you’ve been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we are here to help support you. If you ever need to speak with someone please 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  One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsor contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your communityLearn about treatment, seizure and lifestyle management programs that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network It is common for those living with epilepsy to experience feelings of depression.It’s important that you’re addressing those challenges with your healthcare team, as well as any changes in changes in seizure types, frequency, behaviors,sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy  It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health  

I have been battling epilepsy for 5 years and have had a lot of episodes. Because of this, I have some brain damage that affects my memory. A side effect of the medication I'm on is memory loss so I know what it's like. It's incredibly hard. It's harder for me to remember things and at times I have trouble speaking. I have good days and bad days, as I'm sure you do. One thing I have learned is to be patient, if anything it is making us so much stronger to be able to get through anything. We don't get much sympathy from others because they don't know what it's like. It helps to talk with someone who's been through similar things. If you ever want to talk or just need someone to listen, don't be afraid to reach out to me.

You're right.  Lonely and not understood is how I've felt with my temporal lobe epilepsy.  I've had it for fifty years.  It seems the doctors who treat epilepsy are largely concerned about the seizures, although over the last couple decades they have paid more attention to depression as well.  And the people we face day to day mostly associate epilepsy with seizures.  It's been painful to try to talk about other issues like memory or emotional problems and get responses like, "Oh ya, don't worry about it.  I have the same problem..."  I hope you can find a support group with people who know what you face.Mike