Loss of long and short term memory due to seizures and medications

Posted by bruceg @bruceg, Jun 21, 2019

I had seizures for about 30 months until they were brought under control with Lamotrigine.
The problem is that the effects of the seizures and meds have all but destroyed my long term memory. My short term memory is so bad that I will ask someone the same question that they answered thirty minutes before.
This condition has already taken away my ability to participate in running my company.
Soon I will be basically unable to function as a member in my family.
My neurologist and neuropsychologist have told me that this condition will probably not change.
Has anyone on here had s similar condition and had any improvement?

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@bruceg
I doubt this is an option for you but I’ll throw it out. Sometimes seizure medication doesn’t help and people discontinue their meds. Some choose a few seizures instead of the side effects. Also ask you Neuro if a different medication might cause fewer memory issues.

Here’s a little memory information
https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory/diagnosing-and-treating-memory-problems
Jake

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Hi, @bruceg - so sorry to hear that effects of the seizures and meds have all but destroyed your long term memory, interfering with your ability to run your company and encroaching on your participation in your family as you'd wish. I'd have a hard time if the doctor told me my memory would not improve if I'd had losses.

I'd also like to invite @viviannejam @595959 @pamelastewart5 @chynex @rachelskaug @menville into this conversation to see if they have any experiences they might share with losing short and/or long-term memory from seizures and side effects from anti-seizure medications.

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@lisalucier

Hi, @bruceg - so sorry to hear that effects of the seizures and meds have all but destroyed your long term memory, interfering with your ability to run your company and encroaching on your participation in your family as you'd wish. I'd have a hard time if the doctor told me my memory would not improve if I'd had losses.

I'd also like to invite @viviannejam @595959 @pamelastewart5 @chynex @rachelskaug @menville into this conversation to see if they have any experiences they might share with losing short and/or long-term memory from seizures and side effects from anti-seizure medications.

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@bruceg
Just because a doctor tells you your memory condition probably won’t change that doesn’t mean you’re memories can’t improve. I think I said earlier that a speech pathologist helped my with my memory and I’ve taken about 300,000 seizure medications and had over 13,300 seizures, severe ones at that. So if they can help me hopefully you can see some improvement as well. It definitely won’t be easy but nothing worthwhile is. Stay positive, stress, anxiety and depression also damage the memory.
Jake

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Hi, @bruceg - I also wanted to invite @debbraw @kyoto @dorisena @carmella6 @artscaping @bonniep @aarniek into this conversation so they can offer any thoughts they may have on the short and long-term memory issues you've undergone due to your seizures and the medications for them.

They may be able to offer input on whether they have had something like this happen to their (or a loved one's) memory and whether they have seen any improvement, and about how to function as a professional and also as a family member with memory challenges.

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@lisalucier

Hi, @bruceg - I also wanted to invite @debbraw @kyoto @dorisena @carmella6 @artscaping @bonniep @aarniek into this conversation so they can offer any thoughts they may have on the short and long-term memory issues you've undergone due to your seizures and the medications for them.

They may be able to offer input on whether they have had something like this happen to their (or a loved one's) memory and whether they have seen any improvement, and about how to function as a professional and also as a family member with memory challenges.

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I know nothing about seizures and meds but noticed when I was in college in my 40's that I would study one day only to have it disappear the next day for the exam. I learned that many short study periods helps to put the information into the long term memory bank, and I realized that I didn't concentrate well at all with my hectic lifestyle and stress levels. I have learned that the brain needs exercise to keep it working well, and the memory works about like the muscles: the less you use it the weaker it becomes. I managed to do reasonably well in my classes, but nothing like the easy memory I had in my youth and the photographic memory I had playing music. A symphony musician told me they practice many hours a day in their older years to keep up the level of memory and skill in order to perform. So I work two Sudoku puzzles a day and play a few songs on the piano, read two newspapers, and try hard to understand something I am reading which makes no sense at all. I find that people who think differently are interesting to me while I try to figure them out, even though I don't always agree with their views. I never was an athlete but I stretch my brain. And I just love figuring out algebra and teaching basic concepts to children. It makes me feel like a winner, even though I no longer need to know much about algebra in my live.
My daughter balances my checkbook for me. I am spoiled in that respect. You need to keep working at it. And you need to sleep well.
Eventually the body and the mind do wear out a bit, so you do less and take less risk. I don't drive as much. Dorisena

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@lisalucier

Hi, @bruceg - I also wanted to invite @debbraw @kyoto @dorisena @carmella6 @artscaping @bonniep @aarniek into this conversation so they can offer any thoughts they may have on the short and long-term memory issues you've undergone due to your seizures and the medications for them.

They may be able to offer input on whether they have had something like this happen to their (or a loved one's) memory and whether they have seen any improvement, and about how to function as a professional and also as a family member with memory challenges.

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MCI is basically only short term memory loss. Sorry, we have no experience with seizures or medications for seizures. Bonnie

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@bruceg, @lizalucier, Good evening. I do not have experience with seizures or the medication Lamotrigine. However, I have had a couple of years of increasing recent memory issues and what is commonly called foggy brain. I too was told by my neurologist that the memory issues will probably not get any better and I began reducing the stressors that seemed to bring it on. I gave up my volunteer role as the marketing director for our local community center. I was unable to continue playing mahjongg unless someone nudged me through the Charleston, or tile passing phase of the game. I became a stay at home, not wanting to get lost even with a GPS, not wanting to make selections and decisions at the grocery store.

And then, my new PCP suggested that the cognitive issues might be due to anxiety. I had been on gabapentin for a couple of years and my body was used to it. At 900 mg taken in the evening, I got just enough to help with the needles in my hands, wrists, and arms. ....and so we discounted that as a potential cause. I do not use opioids for pain, preferring medical cannabis so that wasn't the cause. Finally, I complied with her request that I go through a neuropsychological evaluation which is a four hour series of tests of cognitive function.

Those tests strongly supported a diagnosis of anxiety....fear of not making the right decision, fear of forgetting to take a medication, fear of social situations because I couldn't remember what I had said in the last 30 seconds to a minute. With my friends, I used to ask, "please tell me what I just said to you". Cognitive issues were also causing some pretty severe fatigue just from the effort of trying to remember.

Even genetics were not in my favor. My father was one of nine children, including his twin brother. Both twins and three other siblings developed Alzheimer's and lived out their days in a secure facility. So of course, I had an irrational fear that my cognitive issues were actually the beginning of Alzheimer's.

When I went in for the follow-up, I was pleasantly relieved because there was no evidence of disease or brain deterioration. I was simply anxious about the pain from small fiber neuropathy (SFN). As it was explained to me, the anxiety about the pain creates more pain which then creates more anxiety and the beat just goes on. I began a graduated introduction to duloxetine taken in the morning. Suffice it to say, my memory is greatly improved, I enjoy social outings again and I am not afraid of getting lost. For medication, I use the system of putting the bottles for the next dosage in a tray. Then I know what needs to be taken when.

I can't imagine how difficult it must be to run a company. I had my own business for 20 years and there is a lot to keep track of and manage. I am shouting encouragement for you not to give up, for you to just keep fighting. This forum (Connect) is a great place to gather information and big doses of support that will help you master your challenges. Be free of suffering today....it is July 4th... celebrate. Chris

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@artscaping

@bruceg, @lizalucier, Good evening. I do not have experience with seizures or the medication Lamotrigine. However, I have had a couple of years of increasing recent memory issues and what is commonly called foggy brain. I too was told by my neurologist that the memory issues will probably not get any better and I began reducing the stressors that seemed to bring it on. I gave up my volunteer role as the marketing director for our local community center. I was unable to continue playing mahjongg unless someone nudged me through the Charleston, or tile passing phase of the game. I became a stay at home, not wanting to get lost even with a GPS, not wanting to make selections and decisions at the grocery store.

And then, my new PCP suggested that the cognitive issues might be due to anxiety. I had been on gabapentin for a couple of years and my body was used to it. At 900 mg taken in the evening, I got just enough to help with the needles in my hands, wrists, and arms. ....and so we discounted that as a potential cause. I do not use opioids for pain, preferring medical cannabis so that wasn't the cause. Finally, I complied with her request that I go through a neuropsychological evaluation which is a four hour series of tests of cognitive function.

Those tests strongly supported a diagnosis of anxiety....fear of not making the right decision, fear of forgetting to take a medication, fear of social situations because I couldn't remember what I had said in the last 30 seconds to a minute. With my friends, I used to ask, "please tell me what I just said to you". Cognitive issues were also causing some pretty severe fatigue just from the effort of trying to remember.

Even genetics were not in my favor. My father was one of nine children, including his twin brother. Both twins and three other siblings developed Alzheimer's and lived out their days in a secure facility. So of course, I had an irrational fear that my cognitive issues were actually the beginning of Alzheimer's.

When I went in for the follow-up, I was pleasantly relieved because there was no evidence of disease or brain deterioration. I was simply anxious about the pain from small fiber neuropathy (SFN). As it was explained to me, the anxiety about the pain creates more pain which then creates more anxiety and the beat just goes on. I began a graduated introduction to duloxetine taken in the morning. Suffice it to say, my memory is greatly improved, I enjoy social outings again and I am not afraid of getting lost. For medication, I use the system of putting the bottles for the next dosage in a tray. Then I know what needs to be taken when.

I can't imagine how difficult it must be to run a company. I had my own business for 20 years and there is a lot to keep track of and manage. I am shouting encouragement for you not to give up, for you to just keep fighting. This forum (Connect) is a great place to gather information and big doses of support that will help you master your challenges. Be free of suffering today....it is July 4th... celebrate. Chris

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Thank you so much, Chris, for putting your experience out there. It shows honesty and bravery to do so, and it is so helpful to others.
In my area, I don't know how I would get the tests you had, as there is not the enlightened attitude with some doctors to do so. I just knew early on that my struggle in college in my late forties was a challenge I could win to some degree, and I believe to this day that our mental abilities are not hopeless, so we can encourage each other to keep exercising the brain, making sensible choices, and pushing on. My mother's condition after her bleeding stroke reminds me to not eat a bag of Fritos for dinner instead of a healthy meal, which can be easier to do with help or planning ahead. I don't intend to stop preparing my own meals, even if it is with assistance. Dorisena

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If you read Jim Brady's book, which is a difficult read at best, you will notice that there can be brain improvement with high amounts of therapy and vocational support if you are at middle age rather than late age. I was determined to help my 80-year-old mother after her stroke in the same area of the brain as Brady's, but no therapy helped, and I only aggravated the neurologist and spent a lot of Medicare money trying. Let's just say her brain was "fried" and she never walked again, and she gave up talking. She could think, which I saw in her eyes, but expressing it was hopeless. She never forgave me for keeping her in the nursing home. I could see it in her eyes. I still believe that improvement is possible in the earlier years. I have no idea if my husband had seizures, but he was on seizure medicine after brain surgery, and concealed very problem possible. His behavior was strange while on the medicine and it was almost impossible for me to tolerate having him in the house 24 hours a day and cooking three meals while caring for five young grandchildren. I hired a nanny.
The details in the Brady book can be helpful for some people if they are at a younger age. The vulgar language used was a bit to get passed, but with enough therapy, Brady showed that improvement can happen. I would think that with MCI, the improvement would be much easier to achieve. Dorisena

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I'm in the same boat. But I've been using this drug for 20 years and about the last 5 years my memory is failing and I having bad hand tremors

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