What Can Help Me? I'm Concerned.

XxBlaqkxX

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I had my first seizure when I was about 9 years old, no family history, always labeled as "idiopathic." I had what were grand mal seizures at first, but once I reached 14 years of age, I started to have like a grand mal seizures that would progress into epilepsy, which changed my diagnosis from seizure disorder to epilepsy. Some neurologists I have seen, I'm not sure why, find my case to be strange (maybe it's the no family history, medications that did work were always far below the therapeutic dosages and I was often okay on only one medication, I don't know...). My mother and father always figured they were catamenial in nature and I noticed the correlation as well, but neurologists never seemed to take us seriously on that part or ignored it and said it probably had nothing to do with it. I took Dilantin for a short time because it didn't work. Took Lamotrigine for a few years before it stopped working. Ended up on Keppra for 10 years before weaning off of it for 15 months.

After those 15 months, I got COVID and the ER doctor just thought it aggravated my seizure threshold. It was a scary time, I had one seizure one evening and then 3 more consecutive ones the next day that weren't stopping. I remember little blips, I like to call them, of what happened while they got me into the ambulance and the hospital. I would have consciousness for little bits at a time. I could tell what one of the paramedics looked like and little bits about the ride to the hospital, but I was in and out. I remembered the nurse in the hospital that tended to me, but I don't even remember the CT scan. I'm still trying to get a hold of my medical records, but it's been extremely difficult. I don't know if they're just busy or what, but I need to know what all they did to me. I'm going to keep trying to get a hold of them. Unfortunately, the main doctor released me before I was fully coherent and my parents and husband were super disappointed in that. I remember my husband even asking in the hospital, "Should she be going home like that?" And then I blacked out again, but my husband said the doctor told him, "Oh yeah, I think she'll respond to all the prescription medications just fine." When I got back home and my mom saw me, the look on her face was utter concern and she asked my husband, "They seriously let her come home like that?" My husband said, "That's what I told them!" I was so confused that I thought I upset my mother or something.

That was almost 1 month ago now. My COVID symptoms are gone, but I am having a lot of struggles with memory and concentration. I know my oxygen levels weren't that great when I went in and I was super dehydrated, but when you're having seizures and in between seizures, you can't really be getting up and drinking a glass of water. They pumped me full of 3 bags of saline in the hospital and my lips were still cracked, but not as bad as what they were when I first went in. I don't know what the results of the CT were, but I'm sure if there was something super serious, they would have said something to my husband or somebody. I'm concerned what those seizures did to my brain.

For weeks, I have been struggling with brain fog and feeling dazed. Lately, it's been better, but it comes and goes. I'm back on Keppra for now (ick).

I have forgotten so many things and I'm slowly remembering. It seems like I've remembered the most important basic stuff like who people I know are or when my birthday is and such. Although, I have forgotten who some historical figures are when people have mentioned them. I have forgotten who my husband's past employers were when he talks about them. Some people who we know, but aren't as often involved in our life directly I have forgotten about. I know it's all within good time, but in the past I know I would have a seizure and everything would just come back to me within the next 24-48 hours. This has been a month. Has anyone else experienced status epilepticus and these issues? If so, what have you done to help them if you were able?

For some reason, I know before I had all of these seizures that for months I had a feeling a "doom" that something bad would happen to me or someone I loved. I can't describe it, but it was a feeling of complete and utter doom. Not sure where it came from, but it stopped after the seizures so I suppose that was the "doom."

Anyway, I had a lot of stress about things before all of this so that probably didn't help my immune system or neurological system any. Now, I don't know why, but stress isn't having the same effect on me. It's super hard to explain. Before my seizures, I could get so stressed about things for days on end, almost non-stop thinking about them and it could make me physically ill. Everything in life was just going wrong already. Now, I have identified the things I was stressed about, but my mind cannot stay on those thoughts more than a few minutes. It feels like the "stress" part of my brain is like numbed or something. Not sure if anyone else has had this experience, but it's so scary. It makes me definitely not feel like me. I mean, I do better without stress, but I can't stay focused on a solid thought for very long like I did before. I have a hard time "anticipating" things because I will remember it a few seconds and then it's gone - a fleeting thought.

I have had a hard time not feeling like myself. A few weeks ago I felt like I was living someone else's life because I wasn't myself, I couldn't remember a lot, and felt like my soul was just placed into someone else's body. My family decided to watch that new Disney movie "Soul" this past week...it was just a mental trigger fest for me, I couldn't stand the movie just because of what I had been through and how relatable some of that stuff felt to me and in the movie, it's all for a sense of humor, but it felt too real to me like exactly how I felt at some points...I mean, I know I could be dead and not here, but I am, but it's a struggle, too getting back on my feet. I am better than I was a few weeks ago, for sure. I think I'm gaining some sense of self-identity back, but some parts just seem asleep like I need to discover them again and it's tiring.

I used to be good at taking pills on time every day/each day, but now I just forget most of the time and that's not like me at all. I have forgotten how to properly write dialogue in story writing and it's frustrating having to relearn that all over again. It's scary, it feels like I must have some damage going on in there or something...or maybe it will just take a long time to heal.

The things that help me the most right now are doing art, telling stories of my life experiences to others (I think it just helps me remember other memories), writing, reading, and playing video games. I spend time with my family, but I've been avoiding a lot of others outside of our direct family because we had COVID for one, but another is I'm afraid to face people again. I mean, how many people know I had seizures along with COVID? I don't know, I've always been really private about my medical condition and don't like to tell others and I know it's not the best, but I think that comes from the way I have been treated in the past because of having seizures.

What are some things I can do to help my brain? I've heard of certain herbs like Valerian or Bacopa for epilepsy. I've also heard of other herbal tinctures like mental focus/concentration, which I am looking into. I'm currently taking a vitamin B-Complex with Folate, a Bone Strength supplement (magnesium, calcium, phosphorous, etc.) a few times a week, fermented cod liver oil/butter oil blend once or twice a week, and taking a clove of garlic chewed and swallowed once a day (of course all of this if and when I remember so there have been times I haven't stuck to my normal routines here). Trying to make sure to get in good, nutrient dense foods, too. I'm highly considering CBD oil and doing a lot of research on this and talking with others about personal experiences and recommendations - at this point I'm willing to try many things as long as they're not harmful, of course, and I generally put a lot of research into things before taking it. Definitely open to recommendations at this point - I just want to feel like me again....
 

HumbleDeer

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Hey. I can't read your whole post. I don't have concentration like that. But I struggle with increasingly severe memory loss during seizures. I'm in a good period now. I haven't had any complex partial seizures in... 3 days! My epilepsy comes in a cycle.

Feel free to ask. Or send a PM if you'd rather.
 

XxBlaqkxX

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Hey. I can't read your whole post. I don't have concentration like that. But I struggle with increasingly severe memory loss during seizures. I'm in a good period now. I haven't had any complex partial seizures in... 3 days! My epilepsy comes in a cycle.

Feel free to ask. Or send a PM if you'd rather.
I'm sorry, I generally type books. I have more focus writing than I actually do reading right now so I totally get it.

I'm sorry to hear that you struggle with severe memory loss. I know during seizures, I know nothing pretty much. It comes back eventually, but this time it's so different and I've never experienced this before.

I hope that you can one day become seizure free and keep the good days coming!
 

Nakamova

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Welcome XxBlaqkxX! I replied on one of the other threads where you posted. :)
 

Jeanbean

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Welcome, XxBlaqkxX,
I see this was January 5, 2021, and I wondered if you've been feeling any better since that time? I think having COVID and epilepsy would be difficult. Missing medications-anti-seizure medications can be a big part of the problem. Do you have them in a container to alert you to take them? I do that every day setting them up ahead of time or I would forget. I see you are taking Keppra and that in itself can cause problems. I tried it and couldn't stand the way I felt. I take Carbatrol and Depakote and have been on these for years. When I have had a tonic-clonic seizure (grand mal) I sometimes have 2 weeks where I can't remember things, feel out of it, and don't feel like myself. So I'd go easy on yourself for all you've been through. Remember COVID affects the brain as well and causes memory problems so you have both to deal with.

I am very conservative and do not take any herbs or supplements fearful they interfere with my meds. I do take vitamins.

Do you have a neurologist? You need to follow up with that doctor especially having COVID. My neurologist told me the "doom and gloom" thoughts and feelings are due to the epilepsy-we have strong emotions in our brains prior to the actual seizures. He was a top-notch neurologist and unfortunately moved away. I hope you find some fantastic physicians to help you out. Reaching out here is a great start too. Good luck and stay in touch, Jeanne
 

dustmansam

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I have had many of the same problems, minus covid, with different drugs and an extreme case of brain fog. Short term and long term memory were shot and fine motor skills were nonexistent. I can really relate to forgetting if I had even taking pills. There were a couple things I tried to help with memory and fine motor skills. A slightly complex paint by numbers really helped with the motor skills. A model airplane helped with memory and concentration. There is a website called brainhq that works on brain plasticity and covers all the different problems you speak of. I have a very hard time concentrating long enough to read a book, but graphic novels have been super helpful, and there are some really good ones these days, not just superheroes. Lastly, this one has been the most effective but I realize it seems odd, brazilian jiu-jitsu. It is very much like human chess. No punching or kicking and always on a mat. I am 55 and no great athlete, but many "moves" have many steps and really stimulates the memory as well as keep the body healthy. I have had multiple tonic-clonic seizures at the gym and the mats have saved me each time. My instructors know I have them and I told them what to do if I have one and it has been no problem. Sorry for rambling, but I hope any of these can help.
 

XxBlaqkxX

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Thanks for your replies...I am a bit embarrassed to say that I don't remember this thread....at all o_o
 

XxBlaqkxX

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Welcome, XxBlaqkxX,
I see this was January 5, 2021, and I wondered if you've been feeling any better since that time? I think having COVID and epilepsy would be difficult. Missing medications-anti-seizure medications can be a big part of the problem. Do you have them in a container to alert you to take them? I do that every day setting them up ahead of time or I would forget. I see you are taking Keppra and that in itself can cause problems. I tried it and couldn't stand the way I felt. I take Carbatrol and Depakote and have been on these for years. When I have had a tonic-clonic seizure (grand mal) I sometimes have 2 weeks where I can't remember things, feel out of it, and don't feel like myself. So I'd go easy on yourself for all you've been through. Remember COVID affects the brain as well and causes memory problems so you have both to deal with.

I am very conservative and do not take any herbs or supplements fearful they interfere with my meds. I do take vitamins.

Do you have a neurologist? You need to follow up with that doctor especially having COVID. My neurologist told me the "doom and gloom" thoughts and feelings are due to the epilepsy-we have strong emotions in our brains prior to the actual seizures. He was a top-notch neurologist and unfortunately moved away. I hope you find some fantastic physicians to help you out. Reaching out here is a great start too. Good luck and stay in touch, Jeanne
I know this response was forever ago, but I never remember even seeing it in my notifications. I was so not myself earlier this year.

I've come along way since then, thankfully. Still have some issues with memory...there are still things I'm remembering every day. The loss of memory did me in big time, but I'm hoping that'll only keep getting better.

I was given permission to not be taken AED's during that time (before I was admitted to the hospital and the 15 months) before. I had absolutely no issues. Didn't feel weird on menstrual cycles anymore. Could go to bed and wake up with bursting energy I hadn't had in years. I know the ER doctor told my husband, "We've seen a lot of people with COVID have seizures that don't even have a history of them. It aggravates some people badly. Since she has a history, I'm definitely not surprised."

I keep my pills in the pill bottle these days. I don't bother with pill packs these days. I forget to load them half the time and I have kids that seem to be able to climb up to any shelf so I'd rather them with a childproof lid. I've been doing okay at taking it from the prescription bottle as of late.

I know a lot of people seem to dislike Keppra a lot and it doesn't seem to work for an awful lot of people. For whatever reason, it worked for me. It was the only AED I had ever been on where I didn't have breakthrough seizures. I was seizure free on it for 10 years before I got the doctor okay to wean off of it completely and did okay for 15 months and then I got COVID and well...forget that, I guess. I'll always be a slave to the pharmacy, it seems...

I never had issues with Keppra other than feeling tired and perhaps it has something to do with my dental health, but that could be other vitamin deficiencies I have, too, or a combination of both, more than likely. My dose of Keppra is super low, though. Right now I'm doing okay at 500mg a day and will start taking Keppra XR if the pharmacy ever gets their stuff together. If needed, I could go back to the 1,000mg/day, which is what I was taking before hand and even that is still a low dose and the only medication I had to take. Most doctors don't want to switch me off of it if it's working without major side effects, especially since it's the most mild as far as pregnancy goes and things like that. I had a neurologist say they liked it if that one worked for patients because it's also available in a liquid form and can be administered IV (but I would think most medications these days have a liquid form for emergency use).

Before then, I had been on Dilantin for a couple months and then Lamictal for a few years (both didn't work well).

I try to go easy on myself, but it's not easy with kids and now that my husband is chronically ill...most of that has been left up to me. He lets me sleep when he feels he can handle Tweedle-dee and Tweedle-dum, but it's hard on him and I often can't always get in the amount of sleep I need, but with kids - that's pretty much unavoidable when they're young.

Yes, I have a neurologist. I got back in to see the one I was seeing before. I ended up getting into to see them last week. Takes forever to get into one...but it happened recently. The neurologist I see is good, but I just don't like going to to the neurologist either way....considering it's an hour and a half a way. My husband is having to see 3 specialists an hour and a half away as well. Let's just say it's been a lot of gas money and road trips lately and I feel terrible about it. The kid's hate it, but they're usually fine if we take them out to do something afterwards in the city.
 

XxBlaqkxX

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I have had many of the same problems, minus covid, with different drugs and an extreme case of brain fog. Short term and long term memory were shot and fine motor skills were nonexistent. I can really relate to forgetting if I had even taking pills. There were a couple things I tried to help with memory and fine motor skills. A slightly complex paint by numbers really helped with the motor skills. A model airplane helped with memory and concentration. There is a website called brainhq that works on brain plasticity and covers all the different problems you speak of. I have a very hard time concentrating long enough to read a book, but graphic novels have been super helpful, and there are some really good ones these days, not just superheroes. Lastly, this one has been the most effective but I realize it seems odd, brazilian jiu-jitsu. It is very much like human chess. No punching or kicking and always on a mat. I am 55 and no great athlete, but many "moves" have many steps and really stimulates the memory as well as keep the body healthy. I have had multiple tonic-clonic seizures at the gym and the mats have saved me each time. My instructors know I have them and I told them what to do if I have one and it has been no problem. Sorry for rambling, but I hope any of these can help.
I like graphic novels as well - mostly manga. I used to be able to blitz through them. I loved having a stack of them to go through from the library. But, I know my husband mentioned it might be easier for me because it's in sections, in pieces, and that my brain probably goes through it better or my type of thinking is just different. He's probably right about that. I've always been a slow reader in school. People said I'd grow out of it one day and all of that, but I never did. I am fairly slow at reading, easily distracted, and sometimes I read over a sentence and don't know what I just read. This happened a lot when I first started having seizure issues at school.

I'm glad that jiu-jitsu works for you. It's nice to find something that helps.

In this past year, I almost can't stand having my hands empty. I always have do be doing something if I'm not sleeping. I have a hard time sitting around and watching tv or watching a movie - I literally have no interest in television or watching movies since having COVID. I wasn't a huge fan of television as an adult, but I'd at least find something I was interested in and would say, "I've gotta see that!" My husband wants to see so many movies with me, but the motivation isn't there...at all. It's hard to sit and watch a movie or to even think about doing that.

Video games and doing art have been my saving grace. Helps with stressors, and I can at least do art activities with the kids and they have a lot of fun doing art with mommy.

I've heard of the brain exercise websites in the past, but they ended up wanting to charge me money or I couldn't do anything without signing up. I'm not sure how brainhq is, but I'll look into it.
 
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