When I was younger I had absence seizures (most mornings I would have one or two) I wasn’t fully diagnosed with them until I had a tonic clonic seizure in 2010. (I’m 23 years old now) And I’ve noticed that I can’t remember loads of things from when I was younger. My sisters mention things that happened when we were younger and I can’t remember any of it. I can’t remember really the first 10-12 years of my life and it’s really sad.
Can absence seizures cause long term memor... - Epilepsy Action
I’m 29 and have had absence seizures since I was 14. I used to get them every morning and go on with my day. If I had work or school I’d go as soon as I felt better. I learned to play them off. Others can’t tell, only my family notices. I have both absence seizures and have had a few convulsions. My experience with my memory is not what I have heard from doctor's. I can get confused and forgetful when I have a seizure, and maybe the following day. I forget words, things I was going to say/do. Not much beyond that. I am curious about where you fall in with your sisters. I am the youngest and I remember my childhood. Being the youngest though, there is a lot I was protected from seeing or hearing. My sister is 3 years older and my brother is 8. It makes sense to me why I don’t remember everything. I do remember a lot of my childhood and adolescence though. I agree with the last response, some medications can affect your memory while you’re on them. I always check side effects on line, others experiences, and what the doctors and pharmacists say. I do not agree to taking any medication until I have done my own proper research, due to bad past experiences. I have learned to look after myself and not always assume doctors know more than I do. We all know our own bodies best.
Hello. That’s hard that you still have them. I am the 2nd oldest out of 4 (I’m 23, my older sister/twin is 23 and my younger sisters are 21). I wasn’t really given much choice about the medication I have been prescribed. I didn’t even get much time to decide. It was kind of these ones or you are going to keep having seizures. So I am now taking 300mg of Lamictal a day. Maybe it is the medication but my neurologist doesn’t believe me about either the medication or the seizures causing my memory loss. So it’s hard to talk to someone who doesn’t believe you. After a seizure I’m really forgetful and confused for days usually. One of them I had I fell in a ditch in the snow, woke up in the ambulance they asked me the typical Qs I got them all wrong, it basically ruined that holiday, I can’t remember anything that happened that week.
As G1na mentions memory problems can happen for various reason.
To help you understand how problems with their memory can affect some people with epilepsy, we have our memory information. We look at how epilepsy can affect memory, how memory works, and give some hints and tips to help you cope with memory problems. epilepsy.org.uk/info/memory
Talk to your family doctor about your memory problems. If necessary, they may refer you to a memory specialist for an in-depth assessment.
If we can be of any more help, please feel free to contact us again, either on here or by email firstname.lastname@example.org or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.
Epilepsy Action Helpline Team
I’m sorry to hear that you feel your doctor doesn’t believe you. That’s tough. I would also feel sad to not have those memories. Although I remember less than my siblings, I do have many memories. I wonder if your age played a role. I’m curious because when we experience these seizures we’re basically absent. For example I experience different levels of absence seizures. In the most severe case I do not know my name, work, school, address, etc. in the least severe case, I can play it off, and only people who know me can tell I am having an episode, and anywhere in between. When I experience the more severe ones, I do not remember what happened. I always have to ask my family what I asked/said/did. They tell me, and I’m okay with that. The next day I realize that the day before I had many episodes through the day but the severity lessened. It’s still a blurry day. Now that I’m older I find notes I write myself when I experience an episode. For example if I wake up to use the restroom and go back to bed. If it weren’t for the notes I would not know that I had an episode. When I do have episodes, most times than not they come in a row and those 3-4 days are blurry. I wonder if this is how your childhood feels? In my case my doctor has pushed for more meds and I’m over medicated. I’m in the process of getting a second opinion because up until now I have never had one and my doctor and I don’t see eye to eye. He has different goals for my health than I do. If you’re unhappy with your doctor, maybe searching for a good neurologist where you live? As well as more research on your medication and the type of epilepsy you were diagnosed with. Do you still experience seizures?
Hi. I don’t have absence seizures anymore, but when I did they did vary in severity. Sometimes I could snap out of it other times I would be stood up 1min and the next on the floor, I would be either very confused when I wake up or just be able to continue on with my day. I would have a couple a day for a few years (2010-2015), (2010 was my first seizure, 2016 was my last) I haven’t to date had another seizure. I haven’t had a seizure in 3 years and 11 months. But when I had them they were bad, they usually last past 5-6mins, I would be out of it for days and not really know what was going on. The neurologist I have is a specialist in the field of epilepsy and kind of the only one in the country (I live in Luxembourg but also the UK for uni). I have generalised seizures, the full on ones that people mostly associate when you mention epilepsy/seizures.
Hello, I apologize for the late response. I do not login often. I’m glad to hear that you are seizure free. I empathize with you not having memories from your childhood, as well as feeling misunderstood. From an outsider looking in, I feel that your neurologist does not want to mess with your medication because he feels that it is helping you. If it is not causing you current memory problems, or other side effects; I believe he is afraid to change your medication, and it be ineffective or cause you more side effects. I read the info the admin shared, and it is very informative. I wish that with some medications, I had dealt with certain side effects vs continuously changing medications. I started with 1 medication and now on 4. I am aware that we can grow out of medications (become immune) meaning we have to start a new rx plan. Which may or may not work, and cycling through different rx plans until finding the appropriate one. I am also aware that we can grow out of having epilepsy when we have it as children. In my experience the variety of medications as well as being over medicated has caused many side effects including: weakened immune system, poor bowl movements (rash on face when having abnormal bowl movements), skin conditions (eczema, acne), poor balance, anxiety, mania, depression, insomnia, hopelessness, pancreatitis, etc. some which unfortunately are irreversible. still the seizures are not well controlled. In the end it is your health, and your choice. I firmly believe in advocating for ourselves when it comes to our health, how we are being treated and what we are being prescribed. If your neurologist is scared of change and you’re not, then it’s appropriate to stand up for yourself. I also believe in being well informed before making a rash decision. I wanted to share my experience so that you can make an educated decision, but I’m only 1 story of many. Keep in mind that we all react different to medications. What may work for you may not work for me and vise verse. When possible, you should speak to your neurologist about your concerns, even if you have already done so. Your neurologist is responsible for helping you understand why you do not remember your childhood, and not be dismissive of your concerns. The wonderful thing about having a twin and siblings close to your age is that they can share your life experiences with you. I understand that it is not the same, and that you wish you could remember yourself, but we have to make the best of what we have. This gives you and your siblings more of a reason to continue creating mew memories, including memories they remember that you don’t. It may sound silly, but it may help bring memories back. If not, it’s a new memory to cherish.
I've always worried about my memory, so much so that talking about it is just one of my go-to ways of describing myself. But you know what? I took a battery of psychological tests, and my memory tested better than average! (I'm on Lamictal for Bipolar Disorder, but I have had seizures if I don't take the Lamictal on time.)