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Temporal Lobe Epilepsy

I honestly just want somebody to talk to about my TLE so I don’t feel so alone. I just want to talk to someone who understands what I’m going through. I read and read about people who suffer Grand Mals, and absence seizures, and I have had Grand Mals myself. But this Temporal Lobe Epilepsy... it’s its own monster. I know I sound like a broken record to my family because they just don’t understand what it’s like. My sister has bipolar, and she can definitely relate. That’s been nice... but is there anyone else out there that truly knows what I’m going through? Someone who won’t get tired or annoyed when I bring up how I’m feeling? I feel so alone

Comments

Hi, Thank you for posting it,

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-epil... 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

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

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

Hi.  I know what you are

Hi.  I know what you are going through, and you are not alone.  The uncertainty of seizures is very scary.  Society's lack of understanding of Epilepsy makes us feel like we are alone, yet there are millions of people with Epilepsy in this country. People without seizures will never truly understand what we go through and how we feel. I have Temporal Lobe Epilepsy, and have had Grand Mal seizures since I was 17 years old.  I am 55 years old right now.  I have tried almost every medication out there and have never been completely controlled.    I had seizures as an infant for a year, then they stopped until my senior year in high school when the seizures came back with a vengeance. I was born with the condition, so my right temporal lobe never developed.   In 2003 I had brain surgery to remove my right temporal lobe. I was having about 10 seizures a year before surgery, then just 1 or 2 seizures a year after surgery.  But my condition has been worsening over the past few years.  I used to get an Aura to warn me when the seizure was coming, but now I don't.  Throughout my life, the seizures would only last a few minutes then stop. Beginning in 2019, I no longer get an aura and the seizures do not stop on their own.  So now 911 gets called when I go into seizures. I  have been hospitalized 4 times this year.   My husband died 5 years ago so now I live alone. I am afraid I will have a seizure at home by myself, and hurt myself very badly, or die.  I have been having seizures about every three months.  Luckily, I have been around people when the seizures have happened each time this year. I am considering having surgery again if my seizures continue on this path.Be well,Deedee

Yes I know what you are going

Yes I know what you are going through my seizures start in the front temporal lobe and yes they are a monster all on it's own. I hate it when doctor's say they understand what we go thru when having a seizure and I say no disrespect but you don't know what we go thru. It really takes a lot out of us and no people understand what we go thru. I have the updated VNS and the other day (Friday) I had 5 seizures all of them grand mal and stopped breathing twice..  I am giving serious thought to the RNS and anything else that could at least get these under somewhat control.  I have had this since I was less then 10 years old and I am now 50. I have had the nocturnal seizures which are uncomfortable and so on..  My seizures also brought on Biploar which is in somewhat REMISSION but at times I just want to give up because of the pain and everything related this. I keep going because of my family (haha) and my friend Luis who is starting to understand what I do thru and unlike my own family wants to really help me when I have a seizure.  YES over the years I have been on a lot of seizure meds and for awhile they work then my body builds a tolerance to them and they don't work anymore..

Yeah I Completely

Yeah I Completely understandWhen I was three years old I got seizures for eight years after I went on a diet I was f when I was three years old I got seizures and I went on A diet and right away they went away till I was 13 then they cam back in to my life and felt like I did something wrong for having seizure and they got really bad as I got older I’m 27 know and really hard to get though this year everyday you have to wake up just pray that God will get you though it which he does but they seem to suck the life out of you it feels so hard to process how hard your trying to be good as person but if it wasn’t for God I don’t no what I would do he has saved over and over again i would love to sit and buy you coffee and just listen to your story here what it like for you 

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