Prolonged phenobarbital usage and connection with dementia?

Hello Dawn,you say you are on one med,what is the name of the med.I have been on keppra for six years it works like a statin on me having all kinds of muscle issues eating away at my tendons and very bad pains in legs.A lot of days I need crutchs to walk it hurts so bad.and the pain just comes and go's when ever

I have been on Fina Barb since sixth grade when I developed my first seizure after having a gymnastics head injury earlier that day I was just out of it for a minute and was fine we walked away we were at a family outing at a big event so other than bumping my head I was out of it briefly but that evening going for dinner I started forgetting where I was and having that aura feeling so of course my parents been very scared called an ambulance and I got an EEG at the hospital and it was discovered I had epilepsy I am still on phenobarbital and the one and only time I switched back in the 80s when some new doctor recommended as when I had numerous seizures where normally I would be seizure free as long as I took my Fina Barb as directed it was 60 mg two in the morning and two at bedtime so honestly as long as people eat healthy don’t overdo it exercising get enough sleep and try to avoid stress which that’s impossible for me but the biggest thing is take medicine regularly and won’t have any seizures for me that worked however just turning 60 I also am very concerned about my memory now most people say it’s normal but I’m becoming concerned but I won’t change Fina Barb for anything I’ve had two great Neurologists I stay with for years and both suggested never go off of Fina Barb because they probably know I would have seizures again I know a girl that was at age 50 saw doctor switched medicine and then developed uncontrollable seizures they never could get it right so that also scared me and alarmed me too if it’s working stick with it that’s just my philosophy but to me nothing is worse than having a seizure you could really really put yourself in danger and then God forbid you’re behind the wheel could hurt other people honestly the Fina Barb works wonderful I’m grateful it doesn’t have a lot of side effects other than I’m tired a lot with low energy I always have been and I’m not great at Remembering things and I know schoolwork was always difficult however even as I faced possibly getting dementia it sure is work better than any seizures that you could even risk your life and die from so I am staying on my Fina Barb and that’s exactly what my doctors recommended as well that’s just my opinion so be safe and staying seizure free is my goal so that in itself makes the decision easy for me I would rather have a little memory loss

@triplets5. I also have been on phenobarbitol for about 50 yrs already feels like 30. Time flies.
And even though I did feel a little foggy had an experience some problems learning and now that I am 60 I have memory loss but similar to others my age I have been reading lately to see if I have her to see the correlation between Fina Barb or epileptic seizures and dementia now they say it could be from the Fina Barb other patients I hear that however also seizures in itself could be causing any dementia the point is I am not going off of phenobarbital because that mean nothing is worth having seizures again or risking horrible side effects from other anticonvulsants I feel phenobarbital is pretty mild I’m grateful that it is the very first thing they gave me after my first seizure from an injury and it has worked all these years as long as I take it regularly don’t miss doses and eat properly and get enough sleep and don’t stress too much I did have some more seizures growing up if I missed the dosages or I was doing foolish diets and they were at that time of month as well so that’s also another factor but yes overall I’m really happy with Fina Barb it is hard to have such low energy at times but I feel like as long as I go on a little bike ride that really helps with my Energy level and depression and honestly at 60 anything could happen any day so I’m certainly not going to change anything about my phenobarbital just because I’m a little forgetful so are people that don’t have seizures and I would imagine most people with seizures of memory problems they take a toll on the brain but yes I am staying with my Fina Barb I know someone who’s doctor changed her medicine at age 50 and she has never been able to control her seizures since so no way would I change

@benice2
I’m just curious how much phenobarbital you take?. I take 162 mg a day. Do you have any balance issues or peripheral neuropathy C
caused by your phenobarbital.
Jake

@benice2
I know that dementia is a result of damaged or loss of nerve cells and their connections in the brain but I doubt they know why for sure.
Like you I won't stop Phenobarbital either. It decreased my frequent episodes of Status Epilepticus but didn't help control my Tonic-Clonics.
I believe that the Phenobarbital is a great drug but has more than it's share of potential side effects but any drug studied for over 100 years may have a similar side effect profile.
Good to hear your seizures are controlled.
I selldom forget to take my medication anymore since I got an automated pill dispensing machine that sounds an irritating alarm until I do take it
Take care,
Jake

My mom was on phenobarbital for years, when she was diagnosed with dementia she was 51 it took eventually took away her ability to communicate. She could get a word or two out but they didn't make sense. I understand treating seizures is difficult but someone who had one seizure very early in life should be evaluated for adverse affects related to long term use my sister had one seizure when she was young she took Dilantin then depakane for a short time she is in her fifties and never had a seizure since that time. Every doctor we saw had no idea what was wrong with my mom, we took her everywhere I saw an article the day after she passed that indicated that long term use of phenobarbital was known to cause dementia. She had other side affects at twenty years of usage she had a pace maker put in after her heart stopped 7 times in one day she didn't have any medical reason, she had a physical two weeks prior. The doctors put a pace maker because they had no idea why her heart kept stopping. Please be very cautious, I only recently learned that phenobarbital is not fda approved because it's been available for 100 years doesn't mean it's better, it just means it will be available unless people make the adverse affects known to others. When the side affects are life changing perhaps the drugs that are fda approved may actually be safer. Again I don't have a background in neurology or claim to be an expert I can only attest to what I witnessed and it was a decline in cognitive abilities a permanent change that I hope others don't suffer from as a result of long term use of phenobarbital. I wish everyone well god bless you all in these difficult times.

@calitonya13
I believe that it's generally accepted that just having Epilepsy increases the risk of developing dementia. I know that when someone tells me multiple things I may remember one, two if I'm lucky but I never remember everything. This is quite common. We can’t remember what we don’t comprehend. I often wonder what part the cause of our developing Epilepsy (if any) plays in the increased risk of dementia.
I’ve taken phenobarbital for either 55 or 56 years.
I have balance, memory, fatigue, and possible symptoms of Aphasia. Phenobarbital and Dilantin are believed to be the cause of my Neuropathy which increases my balance problems. But being on polytherapy, having thousands of Tonic-Clonic seizures and numerous induced comas from Status Epilepticus may also play a significant role. If I am ever diagnosed with dementia I don’t believe anyone will know the cause with any certainty.
Regarding the FDA manufacturers weren't required to prove a drug was safe and effective until 1938. Phenobarbital was available in 1912. This new law most likely when a medicine(?) containing a chemical related to antifreeze killed over 100 people.
Phenobarbital was a godsend to people with epilepsy when it came out.
Jake

Hi Jake (@jakedduck1)
Just sharing some information that might interest you and others in the group.
What has been said to me by doctors and I have also read, is that with the passing of the years, epilepsy might cause cognitive loss. I do also not remember everything anymore. My memory was good until I had 46 years, but with the progression of my epilepsy, it has been clearly affected (appointed in a neurophysiological assessment). Additionally, I am not the youngest anymore, 52 years old right now.
How do I deal with that? Everything that is important, I write down, either in a booklet I carry with me (especially names of people I know I will meet again) or on my computer. I also do prepare a detailed to-do list at the start of the week, which does not let me forget my tasks. Accepting this cognitive change and that I do not have the control I once did was very important to deal better with my memory loss. Giving an example, before when I could not remember a movie I had already seen, I became very distressed. Now, I accept it and watch it again.
And you, how do you deal with your memory change so as to better deal with it? I would love to hear from you and others about new ways to deal with the challenges we face with epilepsy.
Have a nice evening!
Santosha

@santosha

@santosha
WOW 52, you make it sound like the end of the line, lol. Guess you won’t want to trade ages with me. I’m 70.
I never thought about coping mechanisms regarding these
changes. It’s just a part of the aging and Epilepsy process.
I believe that we have to acknowledge the fact we are more prone to certain deficits caused by seizures, medications, injuries, comas etc which we have to accept. By acceptance I don't mean we have to tolerate the deficits and not seek treatment to try and improve them. I went to speech pathologists, physical and occupational therapists to try to improve my most bothersome issues like memory, balance and speech problems.
I just go with the flow. One reason my problems aren't going to go away is because I am not willing to try and improve one or two deficits by taking a chance on changing my medicine which could potentially bring back seizures.
So I'll continue to walk and talk funny forget people's names or faces I have known for decades. Forget words and thoughts but that's all okay. My few remaining friends accept me as I am. I accept the problems and live and enjoy a happy life.
Jake

I just go with the flow.

Hi Jake - @jakedduck1
Sorry if I sounded complaining about my age, this was not what I wanted to transmit. Just wanted to express that after some age, the memory also ages.
Thanks for sharing your experience, I very much agree with what you wrote. Curiosity, did any treatment regarding memory bring good results?
Have a nice week!
Santosha