Have you suffered memory loss from taking Neurontin?

[AlmostaCowgirl]

I was at the age of 5 when I was diagnosed with seizures. It was always unclear as to exactly what was causing my seizures until about 6 years ago, which I found out was a Venous Angioma. Unfortunately it is in the left side of my brain and right behind my left eye. So it's inoperable or if I was to have surgery... I'd become a vegetable for the rest of my life... or even worse... death.

I was first on Tegretol for about 3 years and then put on Dilantin for about 5 years. I was then placed on Meberal. The Meberal actually helps to slow down the seizure so that I am actually able to tell someone when I'm getting ready to have a seizure or if I'm alone... to sit down.

At the age of 24 I was told that I had low bone density and they told me that Dilantin was linked to reducing bone density. (Which just added more grief.)
So, I was on the Meberal and then a couple of years later the doctor put me on Neurontin. I have been taking it for about 22-25 years now.

I have noticed in about the past 10 to 15 years that my memory is not what it used to be. I run into old friends and I have no clue who they are, or friends that I do remember... I don't remember things they try to remind me of. I can't even remember a lot of my childhood, family events, practically anything that has to do with the past. I can remember bits and pieces and that's about it.

It's really frustrating and very depressing to feel like this. I used to have a memory like an elephant, and now I can't even start a book, put it down for a week and start where I left off because I can't remember it! I have to start all over!

I have heard that Neurontin has been linked to memory loss, but I want to know if anyone else has had to deal with this sort of thing because of Neurontin. And, if you changed medications and it went away or do you just feel like an idiot and just nod your head when people bring up "old times" and play along with it.

My doctor mentioned to switch me to Lamactil (or however you spell it) because I'm tired of the memory loss and I'm ALSO sick and tired of BEING tired allt he time!

I want a medication that I'm not going to "feel" drunk on, and that I can keep up with my toddlers. I hate having these and having a damper put on my life! Not to mention I can't even get life insurance because of my seizures!

Is there ANY hope?!?!?!?
Thanks for reading my "novel"!

[swimmy]

Hi CowGirl!
Welcome!
I can't speak to Neurontin, but I have been on most of the anti-epileptic drugs out there. Each one gave me different side effects, it's just a matter of finding the one that you can live with. Trileptal worked for years for me, but it lost it's efficacy so I switched to Lamictal. Once I switched, I realized that I had been living in a haze for 6 years on Trileptal. I can't get those years back, I can only move forward and enjoy each moment.

Trileptal did mess with my memory. I "lost" a lot of my kids' childhoods. Lamictal messes with my memory as well. I live for the moment and take pictures.

Finding a medication cocktail that works is a trial and error task. It can be disheartening, but you need to keep going.

You came to the right place. The posters here are a wonderful source of education and support.

[AlmostaCowgirl]

Thank you very much for your kind words. I just guess I'll have to keep on trying different things! I guess I just fear suffering a massive seizure and not being here for my kids and husband. I had a serious one when I was about 24 and I was reaching into a small cabinet and ended up convulsing right into it, both shoulders and all.

My (ex) husband ended up calling the EMT's and I remember "knowing" I was still in a seizure but was coherent enough to pass all their Q's. They left the house and I guess I went right into another one. My husband ran out and grabbed them before they left and I woke up 24 hours later in the hospital. My brain hemorrhaged and they said I was lucky to be alive. They just doped me up that I didn't wake for 24 hours.

I just fear something like that would happen again and I wouldn't be as lucky.

Hi CowGirl!
Welcome!
I can't speak to Neurontin, but I have been on most of the anti-epileptic drugs out there. Each one gave me different side effects, it's just a matter of finding the one that you can live with. Trileptal worked for years for me, but it lost it's efficacy so I switched to Lamictal. Once I switched, I realized that I had been living in a haze for 6 years on Trileptal. I can't get those years back, I can only move forward and enjoy each moment.

Trileptal did mess with my memory. I "lost" a lot of my kids' childhoods. Lamictal messes with my memory as well. I live for the moment and take pictures.

Finding a medication cocktail that works is a trial and error task. It can be disheartening, but you need to keep going.

You came to the right place. The posters here are a wonderful source of education and support.

[flinnigan]

I was on Neurontin for back pain several years ago, before I was diagnosed with Epilepsy. i was very relaxed and nothing bothered me but it didn't really help the pain. I had a great deal of trouble with memory and didn't like being in the fog so I stopped. I've been on Keppra, Depakote and now Trileptal in the past 8 months and they all effect my memory. I haven't done any "cocktails" yet. My 9 year old daughter is standing behind me and want's me to add this she thinks he's cute.

[joan]

Welcome * My 19 yo son on lamictal since 1/06. It does very well controlling his grand mals. It did take a few months to adjust to, as it made him very tired or never tired in the beginning. Its gotten better.
I wish you well
joan*

[LivingFruity]

Hi Cowgirl Welcome to CWE! I don't have experience with Neurontin, but I wanted to pop in to welcome you. This is a wonderful place to find support, encouragement, and information. Make yourself at home and take a look around. There's a lot of helpful information to be found.

In my opinion the side effects to the medications just aren't worth it. We've chosen to take an alternative route in treating my son's seizures. So far diet, nutrition, and alternative therapies are proving successful in controlling his seizures.

I hope you're able to find a method that works for you, without having to suffer memory loss or nasty side effects

[skillefer]

Hi AC! Welcome to CWE. Ahh, the age old issue of memory problems. Yes, we all seem to have issues with memory. Gotta love the Epilepsy meds, huh? In all seriousness, I was taking Depakote for a long time, and phenobarb, and had similar issues. What helped me, was taking 1000mg of fish oil every day. As for switching to Lamictal, I can't say. I just got switched over to dilantin. so far, it's working great for me. Try the fish oil. check out the library here. There's some great info there.

[ziggidypoo]

Welcome!!

Long before taking Neurontin for Epilepsy, I was put on it for excruciating spinal nerve pain - well, yrs later - no pain?? and loss of memory??

BUT - I also take Keppra, Triliptal, Klonapin, etc. (etc. being non-E meds) and my neurologist says my memory loss is directly due to the seizures, not the meds???

Glad you've joined us. I'm quite gabby usually.

We are one big supportive family.

Pull up a seat, take your hat off, have a cup of water or whatever, and stay a while, check out the whole "house" and live and learn and ask questions - can't learn if ya don't ask questions.

[Crazy Monkey]

I took Gabapentin for a short while, which I believe is also called Neurontin. I had no problems on this, I took it along side my Lamictal. In fact I wished my neurologist hadn't taken me off it, because she then changed my meds to Ethosuximide and Lamictal, this is when my memory suffered. So now I am back to Lamictal only again, though I would be happy to go back onto Gabapentin.

[RobinN]

Gabapentin was Rebecca's second med. It was not a good fit. More suicidal tendencies from that one. She also has had memory problems, and I do believe it was the worst with that one. In fact, I believe it was around that time that she had an event occur that put her into regressive amnesia for three months.

Welcome BTW - glad to have you join us here at CWE

I chose not to vote, as Rebecca is now med free and controlling her seizures with nutritional changes, and neurofeedback.

[brain]

And welcome to CWE, since your post is so good;
I have moved you over to the Back Fence, to
enable others to participate and vote on.



Great Question!

[brain]

My doctor mentioned to switch me to Lamactil (or however you spell it) because I'm tired of the memory loss and I'm ALSO sick and tired of BEING tired allt he time!

I want a medication that I'm not going to "feel" drunk on, and that I can keep up with my toddlers. I hate having these and having a damper put on my life! Not to mention I can't even get life insurance because of my seizures!

Lamictal is a "hot trend" at the moment because
of the success rate! However, one must be in a
slow titration at first, but once that has been
accomplished - and all goes well, you will feel
"wired" and "alive"!

So far I am in the titration of going from my beloved
Zonegran (which will be my "spare tire in the trunk"
as I have nothing to fall back to) to Lamictal, and
since they have first started it off, it's been working
great. Now the titration of phasing out of Zonegran
and increasing Lamictal over the period of time.

That is the only "main" problem with Lamictal, it is
a slow process and cannot be done quickly. But I
know one thing ---> It sure works like heck for a
lot of people and the success is very high compared
with those who are unable to tolerate it. It is worth
a shot ... I admit I was uneasy about going through
another "tirade" of anti-epileptic drugs ... sufficient
enough that I have been "cocktailed" to death with
anti-epileptic drugs! I figured, "OK, one more shot;
give or take..." Finally!

So I'd say, "Give Lamictal a chance ... it might be the
best one around - more Neurologists and Epileptoglists
are recommending it."

[dfwtexas]

I am on Keppra and have been having issues with short term memory. My neurologist says it is more likely that not that memory problems are the result of the E and not the meds. But it is up for discussion...also, which came first, the chicken or the egg???

[Belinda5000]

I took Neurontin a few years back wasn't able take it.
I didn't suffer memory loss but I put on weight because of it made me suicidal.

.

Belinda

[garfieldlea68]

Unfortunately Neurontin is a medicine I'm allergic to (It gives me Hives) so I really wouldn't know

[wife and mother]

The epilepsy itself has been linked to memory loss. Some of the meds can as well. But mainly its the damage to the brain caused by the synapses ending in the same spot. I lived with it for 7 years before my first gran mal. I would go to movies and not remember going. I still have problems remembering my own phone number that I've had for 3 years now, but only on the mdes for one year.

[epileric]

My neurologist recently told me that I had already been on Neurontin. Truth be known I'd forgotten all about that & I still don't remember going on it. Gotta wonder if I forget because of the Neurontin or the seizures

[Ruth]

Welcome AlmostaCowgirl, we are all glad to have you here.

I am on Neurontin, Lamictal, Keppra, mysoline and clonazepam. I hope I did not leave any out. My memory is shot, gone. Neurontin is great for pain and I think it helps my seizures. Does it? I forget a lot of things like my phone number, my address (no kidding), my social security number.

I would forget my brain if it wasn't attached. My memory loss is mainly due to my two status epilepticus that I had. Since then, I have lost my memory, keep repeating myself, and I get lost. I can be 3 blocks from home and be lost. One time it took me a good hour to find my way home that time.

I am not joking about any of this. It is true. My neurontin and lamictal probably add to it.

[AlmostaCowgirl]

Yeah, I took Dilantin for about 8 years when I was younger. It seemed to help, other than the fact it caused me to have low bone density by the time I reached the age of 24. I got the shocking surprise while working at a doctors office and they brought in a new machine and wanted us all to try it out. It tested your bone density and mine... well, was on the low side. Quite low! So, I now have to take 1000 mg minimum a day of calcium to help me out.

Oh how I just LOVE the results from trying to keep seizure free! LOL

Hi AC! Welcome to CWE. Ahh, the age old issue of memory problems. Yes, we all seem to have issues with memory. Gotta love the Epilepsy meds, huh? In all seriousness, I was taking Depakote for a long time, and phenobarb, and had similar issues. What helped me, was taking 1000mg of fish oil every day. As for switching to Lamictal, I can't say. I just got switched over to dilantin. so far, it's working great for me. Try the fish oil. check out the library here. There's some great info there.

[Ruth]

Hi Everyone,

Dilantin works for most people. Even when I was 6. I believe it was the first medicine to come out for epilepsy. It worked for my sister. She started taking it (I do not remember which year). I started taking it in 1949. I was allergic to it. I had the Stevens-Johnson Syndrome from it. My parents were told I was going to die.

I have been on Neurontin, for I do not know how long.I have also been on a lot of other medicines. A combination of all of them has caused me memory loss along with my 2 bouts of STATUS EPILEPTICUS.

My memory is shot!!