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The River Runs Dry?

Thu, 01/02/2020 - 10:21
Hello all, First time posting, though I've thought about it many times. I've been living with Tonic-Clonic seizures for many years now, they've (seizures) lead me down a very "interesting" path in life. I've given up, for the most part, on doctors... though I stay heavily medicated. This is, and always has been hard for me to talk about, being behind a computer screen doesn't help, probably the reason I've never posted before. Memory loss (long term) is my reasoning for this post. I've yet to meet or read about similar situations? Many years are missing, things I've done, places I've been. I've grown so tired of hearing "Oh that's just normal, everyone forgets things"! I've never met a Marine who has no memory of boot camp, except me. Is there anyone out there with large gaps of memory just gone?? Thank you.

Comments

Hi whatif18,I'm glad you

Submitted by birdman on Thu, 2020-01-02 - 19:45
Hi whatif18,I'm glad you shared your experience.  I'm 54 yrs old and have had the tonic clonic seizures most of my teen years and into my thirties.  Other seizures with and without impaired awareness have always been part of my life.  Like you expressed one of the saddest parts of living with epilepsy has been the memory loss.  I often don't know the things I forgot until mom tells stories that I should remember.  I listen to others who have great memory and then I share about my weakness.  Doesn't that hurt when you hear them them dismiss your knowledge that you have this disability.  Then to add to the pain I sometimes get in a discussion where a person is telling about that trip and, "you remember; you were with us."  They won't acknowledge that you have memory loss beyond most, and then they are shocked when they find out you can't recall a special occasion from the past.  I wouldn't say I have large gaps of memory just gone, but I have many smaller pieces of life that seem like they should be memorable but aren't.  Thank you again for sharing your experience at this forum,Mike

Hi, Thank you for posting and

Submitted by Anonymous on Fri, 2020-01-03 - 08:51
Hi, Thank you for posting and we understand this can be very frustrating to experience. 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. 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-concerns 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-healthIt is common for those living with epilepsy to report having difficulties with thinking & memory, which may be related be related to several things from seizures, epilepsy,or a separate issue. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit:  https://www.epilepsy.com/learn/challenges-epilepsy It’s important that you are continuing to follow-up with your healthcare team to address these challenges as well as, changes in seizure types/frequency, symptoms, moods & behaviors. Be open and honest with your doctor about your memory loss and how this is affecting your health and daily life. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionsYou may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, managing medications& side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team.Additionally, you may always contact our 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

I suddenly ended up with

Submitted by prasad mokkapati on Sun, 2020-02-09 - 20:07
I suddenly ended up with temporal lobe epilepsy about 5 years ago when I was 55 years old and have similar situation as yours. I still have seizures pretty much every day. I lost a lot my memories and others say the same thing - getting old so forget stuff. But that's not true. I also have difficulty with remembering names and they come back to me a little while later I remember again. My neurologist told me this a common symptom for folks who had an effect on temporal lobe. 

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