Epilepsy and Seizures: The Impact on Cognition and Memory
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- Опубліковано 26 лис 2024
- This week on Seizing Life® we speak with Dr. Alice Lam about the potential impacts of seizures on cognition, and memory. We discuss the possible short-term and long-term effects of epilepsy on cognition and memory, and the differing ways that seizures may impact children, adults, and aging adults. Dr. Lam also highlights the complexities of the impacts created by medications, seizures, and the normal aging process. Dr. Lam shares how doctors and patients may assess cognition and memory over time and offers some recommendations and resources for people with epilepsy to slow or improve cognitive issues and memory loss.
Dr. Alice Lam is a neurologist and the principal investigator at Massachusetts General Hospital in Boston where her lab explores the interface between epilepsy, neurodegenerative diseases, and cognition. If you have questions or concerns about the cognitive effects of epilepsy or anti-seizure medications on you or a loved one, this is the Seizing Life® episode for you.
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I have temporal lobe epilepsy, primary focal aware with secondary generalized seizures. I went untreated for years. Doctor told me that these bizarre deja-vu episodes were psychiatric, until my first tonic-clonic occurred. Once I started having tonic-clonics, I noticed a decline in my cognition and memory. The medication side effects compound these struggles. I am fatigued and forgetful. I was so bright and ambitious, now I struggle so much. I had to resign from my dream job as an Architectural Design Professional because I was struggling to keep up with the workload. My managers were upset with me and began to treat me poorly due to performance issues. I just want to get better, and build a fulfilling career. I am so discouraged, and I don’t know what to do.
Erin_______
Look for Keto diet. IT was created in the 1920 for Epileptics' Kids.
👌
I feel your frustration, I was a medical professional, I worked in the emergency department and loved going to work everyday. I have always had epilepsy, however it was undiagnosed till my first adult tonic-clonic at 30years old. Now I am a stay at home mom and I can feel myself slipping away little by little. I struggle to find words, do the simplest of tasks without getting side tracked and staying away is a full time job in itself thanks to all the medication.
I am going through the same. Struggling to cope in the corporate world because of epilepsy
I am so sorry to hear about all your challenges.I'm looking for ways to best support someone who has epilepsy.I need help navigating the emotional/cognitive aspect of it.
Methylane blue
I’ve had epilepsy for the past 41 years. No one understands and it makes me extremely uncomfortable and depressed
I'm so sorry to hear that. I feel the same way. And I having loving family members, but I don't feel like even they truly understand. Especially with memory issues. They make jokes about how I'm bubble headed and ditzy. But I was never like that before the epilepsy (hit me at 22 yrs old, I'm 38 now). I actually have quite a high IQ. But I am so forgetful these past several years. I've also been having trouble remembering words and things like that, and people make fun of me. I used to be known as the smart one in the family. Now I feel like some of them kind of get a kick out of me seemingly being an "air head" sometimes. Hurts my feelings a lot.
I feel your pain. Sending huge bear hugs and much love your way. Hang in there.
Hello. I have the same problem. People cannot comprehend what they do not understand. I could have written your letter myself and many times it is hard to know whether to laugh or cry. They need education and grace. It takes time and I have grown in grace through it but it is very difficult. God gets me through.
I am not doing well in my brain
The American Epilepsy Society has a resource to look up local epilepsy specialists: my.aesnet.org/FindaDoctor
Also, it may be helpful to seek medical guidance at a Level III or Level IV Epilepsy Center, which is an option you can learn more about here: www.naec-epilepsy.org/
Sending love y’all…not everybody gets to go there…wherever it’s is we go, it’s somewhere else
I have epilepsy and it has been awful and makes my life really difficult but I don’t remember anything after it happens every day. I hope for a miracle
Epilepsy is not easy to live with and we continue working hard to find a cure.
I am on Disabilty for Seizure disorder and certainly understand. Leaning on my faith and meditating on Gods word has helped.
I can associate with your frustration. I became epileptic from an accident in my childhood, in 1987, at the age of 12. This affected me in many ways mentally and emotionally that distanced me from my association with my friends as they grew up living normal lives. I underwent temporal lobe lobectomy in 2001, having a portion of my left temporal lobe removed. It didn't solve my problem with seizures, however, it reduced my number of seizures. Today, I am having four or five seizures per year versus four or five per month.
I broke into pieces... when I had realised how my future would be....,, because of this disorder I lost my hope and it has ruined not only my brain,,also my valuable dreams,goal,and my future 💔
Epilepsy is not an easy neurological disorder to live with and we continue working hard to find a cure. We appreciate you sharing your experience with us.
I'm so sorry you're experiencing this too. I was diagnosed 10 years ago. Lost my ability to drive. My business is gone. I had some real dark days. What helped me was finding a community of people who experienced what I was going through. Hearing people talk about what happened to them and realizing I'm not alone helped tremendously. I wish you well. You're not alone.
Thank you for taking the time to share your experience with us. Epilepsy is not easy to live with and your situation shows just how important it is that we continue to fund epilepsy research and work towards a cure.
For anyone who needs additional support, please know that you are not alone. We suggest reaching out to the Epilepsy Helpline through the Epilepsy Foundation at 1800-332-1000 or here: www.epilepsy.com/247-helpline
They can give you tools including connecting you with an epilepsy support group. That can be a great way to connect with other people with epilepsy or caregivers to people with epilepsy. If you are struggling with mental health concerns, you may also want to contact your healthcare provider who can recommend a therapist or counselor.
Again, you are not alone. You can find stories of others within the epilepsy community on our website here: www.cureepilepsy.org/personal-stories/
7 years ago I was in exactly the same place. But there is a better future. It took 18 months for my meds to stabilise, and I had to cut out ALL sugary food from my diet. Now I have been allowed my driving licence again, I am seizure free, and apart from feeling whacked at 10pm most nights, I am living with the affliction. It’s not the end of your life, it is the start of a new chapter. Focus on the future and know that you are not alone.
I havent had a seizure since 2019 and i take medication every day. I work a 8-5 job that requires me to complete tasks, and remember new processes.the amount of stress and anxiety i get when i forget something or can't remember something is horrible. I am very insecure about my ability to maintain and I dont think people really understand what it feels like.
I dont know what to do anymore.
We suggested looking at the HOBSCOTCH program which is designed to help those with epilepsy who are experiencing cognitive challenges or memory problems. You can learn about that program here:
www.cureepilepsy.org/seizing-life/learning-to-manage-cognitive-challenges-for-people-with-epilepsy/
@@CUREepilepsy thank you so much💜
I developed tonic-clonic seizures in college and after examinations and testing it was decided I had epilepsy and have been taking anti seizure medication. With this treatment it was discovered that this medication eliminated absence mals I was having throughout childhood. I thought it was something all people had. This malady had caused schools to label me as an inattentive student with failure to concentrate. So one advantage with having this issue in college is that medication eliminated all the past issues I had with epilepsy. In my advanced age I’m not as young as I used to be but no one accuses me of being an inattentive student.
Kelly thank you so much for your efforts to generate awareness around epilepsy. I aura seizures after a cycling accident when I was 10 or 11 years old. Had 1 TC seizures in my late 30s and 1 when I was 41.
I was treated for depression, bi-polar and anxiety for years. But it has taken me 35 years to figure out what was actually happening to me and they were aura seizures. I had to figure it out on my own, docs could never figure out.
And I feel bad and sometimes angry that so many psychiatric medicines have gone into my system.....some I probably didn't need at all. Am still negotiating with my psychiatrist to taper of the bi-polar medicine. It's like fighting in the court.
Im here bc im 43 and qustioning if im crazy or has epilepsy screwed up my short term memory. Its horrible ans scary as i age!
If it makes you feel better I’m 35 and thinking the same about me
I'm 26 and same
Same here😢
I am a 55 yr old male. I was diagnosed when I was 11 yrs old to have epilepsy with my first of so many grand mal seizures. I had grand mal seizures till I was 25 when the drs tried a new drug to me that have stopped my seizures. My memory has been terribly affected with the timeframe of the seizures I had. My memory is still horrible and I wish that I could remember the things in my life. The positive is that I don’t have the seizures anymore.
What was the new drug that helped you?
What makes me med resistant.... I have numerous absence seizures a day... usually around a hundred or more. I now have home health care because of memory problems
I just found this channel. I am 47yrs old and have had about 8 seizures over the past 18 months including 3 last wed. I have been told I do not have Epilepsy so I am not exactly sure what is happening to me other than I am having generalized tonic clonic seizures. I also know that my memory has been terrible over the last few years as well. So far no meds have worked to control them. I am not allowed to work or drive or pretty much do anything without supervision, not sure exactly what my next step is until my next dr. apt in 2 weeks...
We are happy to hear you found us and that we are a resource for you. Epilepsy, which is sometimes referred to as a “seizure disorder,” is a diverse group of neurological disorders of varying types and severities that are characterized by recurrent seizures. When a person has had two or more seizures more than twenty-four hours apart which have not been provoked by specific events such as a stroke, brain injury, infection, fever, or fluctuations in blood sugar, they are considered to have epilepsy. We strongly encourage you to discuss this with your doctor and even seek medical attention from an epileptologist preferably one at an Epilepsy Center that specialize in epilepsy care (you can locate one here: www.cureepilepsy.org/for-patients/epilepsy-centers/) to identify the cause of your seizures and the best treatment for you.
Hi! I never passed to the full my memory test when I was young or up to 55yo calmed but never cured in 3 places in my brain of epilepsy social mode not good, with few fits in life. My memory does not function well and I am told epilepsy came from 8 yo. I am not sure if it was not birth?
I just moved and got a new epileptologist I'm in the process of speaking to them about what I can do about my memory I haven't lost my memory completely but some of my memory is foggy. I can still recall things from long ago so I would say a good portion of my long-term memory is still intact it's my short-term memory that really stinks that you know it's been said to me by you know my own husband he's like you seriously don't remember me telling you this like a week ago I'm like no and he's like wow your memory is really bad.
There is another Seizing Life episode you might find helpful. We had a guest from the HOBSCOTCH program, a program designed to help those with epilepsy who are experiencing cognitive challenges or memory problems. You can watch that episode here: www.cureepilepsy.org/seizing-life/learning-to-manage-cognitive-challenges-for-people-with-epilepsy/
Try taking Ginkgo Biloba
I was diagnosed 5 days before my 4th birthday. So I had my birthday in the hospital. 😢🎉
Epilepsy is not an easy neurological disorder to live with. We appreciate you sharing your experience with us.
❤
My wife was diagnosed with epilepsy 2 months ago and has had memory loss every week (sometimes every day) for 4 months.
Her brain goes back in time. When she loses her memory she believes she is in a date in the past and all she remembers are just things she experienced up to that date. She goes back in time to 2, 3, 5, 10 years ago, forgetting everything she has experienced since then (daughter, friends, work, marriage, etc.). I am recording everything in as much detail as possible and I cannot find similar cases on the internet or in scientific studies.
After a good sleep (night sleep or a sleep of about 1 hour during the day) her memory returns 100%.
Thank you for sharing this with us, you have our deepest sympathies. We hope that you and your wife are able to work with a doctor to find a treatment plan that works for her. Please know that the CURE Epilepsy community is here.
@@CUREepilepsy Thank you.
I have epilepsy, I keep forgetting things too quickly that relates to my studies and there are many more things I forgot too quickly. I asked my doctor if epilepsy cause any memory problems but they said ‘No doesn’t cause any memory problems” and now I’m confused. Because I keep forgetting things I’m worried that I might fail my exams because I’m having hard time remembering things 😢
thank you
I am getting more panicked after watching this video, especially as I am a university student. I had been worrying for a year over why I cannot remember instructions from my lecturer or communicate verbally with coherence. My neurologist had assured me that my EEG reading and brain scan looked normal after I was formally diagnosed, which made me believe that everything is okay. However, as I come to hear on its impacts on ones short term memory, I am only starting to believe that my condition is critical, especially when I struggle to pay attention and use the wrong words when talking.
We understand your fears and offer our sympathy. Please know that you are not alone.
First and foremost, we recommend that you raise your concerns and discuss new treatment options with your physician. If you are interested in seeking additional opinions, the American Epilepsy Society has a great tool to help you find epilepsy specialists: my.aesnet.org/FindaDoctor
Thank you for this as I’ve been recently diagnosed
A question I have is, if you haven’t had a seizure for ten years, how would it affect the brain if you had a seizure out of the blue? My husband has epilepsy and had not had a seizure for 10 or so years he had his first seizure on Sunday is in the hospital and is still having seizures.
I received my initial diagnosis in 2018, and since then, I've been regularly taking Tegral 200 before going to bed. I've experienced around 8 episodes so far in these 5 years. I'm wondering about your opinion on this-do you think my condition is severe, or is it considered normal? These episodes seemed to occur only when I either missed doses or stopped taking my medication.
It's mild. You're fortunate it's controllable. Prayers for you!
@@pamdemonium3138 Thank you very much. Prayers with you too.
Frequently, I'm encountering abrupt memory lapses lasting around 10 to 20 seconds. During these incidents, I also experience trouble speaking, a sensation of buzzing or ringing in my ears, and I hear voices (various voices that I can't identify). These occurrences take place several times throughout the day, and I'm feeling extremely anxious about them. Could this be considered an aura or a seizure? or something else As I mentioned earlier I am on Tegral 200 regularly taking 1 before bed time.
Having seizures after 30 yesterday seizure free with Phenytoin, however a recent mri flagged up involutional changes with volume loss possibly due to long term and toxic Phenytoin use. How can this be proven.
When i was a baby i a inner ear infection, and i had grandmal seizures. My mom said that the dr took me off the medicine . When started school and did their tests, they just stuck me in a slow classroom . I wonder if i the focal seizures. Bc i last year i went to a monitor unit and they said that yes i do.
Then, oddly, when I found out when I woke up in the hospital grandmal seizure ,I'm pregnant 🤰
I have about 1 seizure every 2-3 years. Is that considered a lot? Would that be enough to PERMANENTLY ruin my memory and cognitive ability? Or could I 100% recover as if they never happened?
How seizures impact memory and cognition vary for person to person. It is important to discuss this with your doctor and/or neurologist. We have a Seizing Life episode on this topic where you can learn more about possible short-term and long-term effects of epilepsy on cognition and memory: www.cureepilepsy.org/seizing-life/the-impact-of-epilepsy-and-seizures-on-cognition-and-memory/
This episode also has recommendations and resources available, including the HOBSCOTCH program which is designed to help those with epilepsy who are experiencing cognitive challenges or memory problems.
www.cureepilepsy.org/seizing-life/learning-to-manage-cognitive-challenges-for-people-with-epilepsy/
Do you take med?
My seizures have increase years, it started at 13yo and now I have 42 and usually have one seizure almost every 3-6months.. I don't rack l recall some things that happened like 12 years ago. Is like whole year went away. Is weird! My epilepsy is due to a surgery, a neurologist discovered a malformation and I had to have surgery or I could die ..
My niece have epilepsy and autism , and I see that she is having speaking and eating issue, also her mind is slow almost two years behind her age. Her epilepsy diagnose at age of 1 year and now is 5 years old but she cannot speak one complete sentence.
Have you looked into hypothalamic hamartoma? Did she have gelastic (laughing) seizures?
I had all 3 seizure types and have autism. It’s affected me my whole life but my family has made an impact. One thing I can say, is that it would probably have been easier if my parents told me to be upfront about my disabilities with people. They always treated me “normal” but too normal probably. Often throughout my life I could tell people knew something was off- but I never knew I should tell people because they always seemed to treat me younger because of it. Probably hard all around regardless. But I can verbalize fairly well (not as much vocally) and have a job and am low-support. Though I am not sure I should be low-support.
epilepsy and cerebal palsy with cognition and memory
I Lost my memory
Finding a treatment that works can be a long road. We hope this podcast was helpful. If you want to learn more about the HOBSCOTCH program that is aimed at helping to improve memory and cognition and is mentioned in this podcast, you can visit our site here: www.cureepilepsy.org/seizing-life/learning-to-manage-cognitive-challenges-for-people-with-epilepsy/
We can live a full life with memory loss. I try to look at it like a cleaning up of some very bad memories and extreme trauma
There’s exercises for memory on line. I also keep a notepad by me. Then prioritize the list. Keep it near. I have a nurse button and have back up. My husband and a few friends. I’m very independent under the circumstances
I’ve had memory loss with meningitis. BUT it was not ongoing and this has been. My general all over welll being comes from stem cell therapy patches. It helps memory but so many other things too. CBD low THC helps everything. Support from a few friends, unlike my old social life
Developing hobbies that calm us is extremely therapeutic. We’re all creative in our own way
I’d be happy to talk more. I’ve been EXACTLY where you are. Especially after two brain aneurysm surgeries
The last stitches in my head after a seizure where I hit my head hard 2:06 on a corner counter , really made it very much worse
Hi what do you mean by low cbc and thc helps my brother is also suffering from epilepsey
I'm proud of my seizures. The only issue I have with my epilepsy is people around tend to call the emergency, and even worse, through their lack of knowledge they like to restrain my arms and hurt my shoulder joints. Next time I'm having an aura, I'll either find a place where no one can find me, or I'll tell them to f off while I'm enjoying a seizure!
Who tf enjoys seizures? Please explain. Epilepsy has affected so many people’s lives in a negative way including mine
What will happen when someone who has absence seizure abruptly stop his medication and replace it with herbal medicine?
Is it all possible that someone who has absence seizure has selective memory?or it is a choice?
No. Absence seizures causes a loss of awareness so the person won't know events that happen during the seizures.
Frisium
💜💜💜☮️💜💜💜🙏🏼
im 13 and i had my first seizure (that i know of) in january just a couple days before my birthday and it ruined my life... i got diagnosed with frontal lobe epilepsy in july i believe and every since the seizure my memories been getting worse and worse. its so hard for me to focus and schools been incredibly rough for me, im barely passing every class and i just cant process things as fast no matter how hard i try. my doctor said i have nocturnal seizures but i dont think they ever explained why i had one when i was awake, but it all started making sense, ever since i was little id wake up and id be bicycling my legs or id wake up crying and yelling without any recollection of a nightmare. i have so many "out of mind/body" experiences too, ill be told of weird things ive done and have 0 recollection. my mom handed me a dinner i hate (spaghetti, dont @ me..) and i just gulfed it down but my eyes were closed and i didnt respond to anyone, and theres so many more instances of these.. i started taking keppra, i dont remember when but i hate it. i take the liquid but i cant get it down without gagging, this stuff ruined my life.
Epilepsy is not an easy neurological disorder to live with. Your experience reinforces our commitment to fund research to find a cure.