Genericusername.
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I've been taking Dilantin for a while and was wondering if anyone else who takes it experiences concentration and memory problems with it as a side effect?
Dilantin Questions.
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Hi GU, welcome to the forum. :hello:
Lot's of folks here that have used Dilantin for a long time and experienced side effects. See here for a sample of past discussions on the subject:
http://www.coping-with-epilepsy.com/forums/tags/dilantin.html
Lot's of folks here that have used Dilantin for a long time and experienced side effects. See here for a sample of past discussions on the subject:
http://www.coping-with-epilepsy.com/forums/tags/dilantin.html
Z J
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Howdy,
Yeah, I was put on Dilantin right out of the hospital (brain surgery), but that was 7 years ago. I expierienced hair growth, which is what one of the side-effects are. Maybe a little memory loss, but hey, who doesn't now and again, right? (Alright, 2 minutes of recent memory have been saved over my 7-year career, I'm better at long term.)
Yeah, I was put on Dilantin right out of the hospital (brain surgery), but that was 7 years ago. I expierienced hair growth, which is what one of the side-effects are. Maybe a little memory loss, but hey, who doesn't now and again, right? (Alright, 2 minutes of recent memory have been saved over my 7-year career, I'm better at long term.)
BuckeyeFan
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:cheers:
Welcome to CWE!
Yep, lots of people here are on dilantin (generic form is phenytoin). I myself have been on dilantin for 28+ years. About 6 years ago I switched from Dilantin to another brand name called Phenytek. It is simply an extended release version. I have never taken generic dilantin and would strongly recommend against it.
It is a very old medication that would probably never get by today's FDA standards if it was new to the market. Lots of side effects. Yes, it can cause memory and focus issues especially if the blood concentrations get too high. When mine get too high, I can tell it pretty quickly. It is important to monitor your blood levels regularly with this drug. Should be between 10-20, but individuals may have their own limits.
I have not had gum issues or liver issues (which should also be monitored). My focus is a problem, but is doing pretty good right now. I don't know about the hair growth. I am more than a little bit on the 'hairy' side
:embarrassed:, but so are my brothers, so that may just be inherited.
Welcome to CWE!
Yep, lots of people here are on dilantin (generic form is phenytoin). I myself have been on dilantin for 28+ years. About 6 years ago I switched from Dilantin to another brand name called Phenytek. It is simply an extended release version. I have never taken generic dilantin and would strongly recommend against it.
It is a very old medication that would probably never get by today's FDA standards if it was new to the market. Lots of side effects. Yes, it can cause memory and focus issues especially if the blood concentrations get too high. When mine get too high, I can tell it pretty quickly. It is important to monitor your blood levels regularly with this drug. Should be between 10-20, but individuals may have their own limits.
I have not had gum issues or liver issues (which should also be monitored). My focus is a problem, but is doing pretty good right now. I don't know about the hair growth. I am more than a little bit on the 'hairy' side
:embarrassed:, but so are my brothers, so that may just be inherited.Absolutely!
When I was first diagnosed with E they put me on Dilantin. I was 27 (now 40) and working in an office and I immediately felt the effects of Dilantin. I actually called the doctor (now I was new to E and didn't know a whole lot about E or meds) and told him he had me on the wrong stuff because I felt like the world slowed down to 5 mph. I actually whispered to him and said, "I feel a little retarded or slow." He responded, "Great, that means it's working." My boss also started noticing I could no longer multi-task, forgetting things, I was always tired and basically my whole personality changed. I continued it because I didn't know about switching to something else and for the most part it did control the seizures, at least for while. I also experienced what I now know to be "brain fog" which I could never describe but definitely felt it A LOT! As the years went by the Dilantin was no longer controlling the seizures and eventually switched neuros and ultimately meds. However, TODAY I don't have a lot of memories of the years when I was on Dilantin. There's a lot of gaps. So, yes at leat for me Dilantin definitely caused me some memory problems both during and long term. But, to be honest my memory is not so great these days either and I've opted to take a lot of videos of my daughter since my guess is I'll probably won't remember a whole lot down the road. Also, you have to be careful if your levels go to high and that happened to me once and I was a complete zombie, started to stink (poison coming out of the pores) and waking up with pools of sweat. Had no idea I was even toxic, but thankfully it wasn't going on for too long until I got my levels checked. That's when I changed neuros and went off that med. So, be careful with that.
Unfortunately I think most of the meds cause some memory problems as well as the seizures, but perhaps you can switch meds and maybe you'll have a little better luck with the memory issues. I do think the newer meds are a bit better for the memory stuff. As far as Dilantin my neuro won't even prescribe it anymore and the only way he'll prescibe it to someone is if they're older and have been taking it for years and it's been controlling their seizures with no problems. Other than that, he won't even consider it.
GOOD LUCK!
When I was first diagnosed with E they put me on Dilantin. I was 27 (now 40) and working in an office and I immediately felt the effects of Dilantin. I actually called the doctor (now I was new to E and didn't know a whole lot about E or meds) and told him he had me on the wrong stuff because I felt like the world slowed down to 5 mph. I actually whispered to him and said, "I feel a little retarded or slow." He responded, "Great, that means it's working." My boss also started noticing I could no longer multi-task, forgetting things, I was always tired and basically my whole personality changed. I continued it because I didn't know about switching to something else and for the most part it did control the seizures, at least for while. I also experienced what I now know to be "brain fog" which I could never describe but definitely felt it A LOT! As the years went by the Dilantin was no longer controlling the seizures and eventually switched neuros and ultimately meds. However, TODAY I don't have a lot of memories of the years when I was on Dilantin. There's a lot of gaps. So, yes at leat for me Dilantin definitely caused me some memory problems both during and long term. But, to be honest my memory is not so great these days either and I've opted to take a lot of videos of my daughter since my guess is I'll probably won't remember a whole lot down the road. Also, you have to be careful if your levels go to high and that happened to me once and I was a complete zombie, started to stink (poison coming out of the pores) and waking up with pools of sweat. Had no idea I was even toxic, but thankfully it wasn't going on for too long until I got my levels checked. That's when I changed neuros and went off that med. So, be careful with that.
Unfortunately I think most of the meds cause some memory problems as well as the seizures, but perhaps you can switch meds and maybe you'll have a little better luck with the memory issues. I do think the newer meds are a bit better for the memory stuff. As far as Dilantin my neuro won't even prescribe it anymore and the only way he'll prescibe it to someone is if they're older and have been taking it for years and it's been controlling their seizures with no problems. Other than that, he won't even consider it.
GOOD LUCK!
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The first AED med I was put on was Dilantin. I didn't have any memory issues with it, (although I was on a fairly low dose). My neurologist switched me to another drug because she was concerned about the long-term side effects. Currently I'm on Lamictal, which is affecting my memory. I think it's a risk with all the AED meds, because they're designed to slow the brain down, both in encoding and in recalling memories.
I took
Dilantin for 35 years.....and yes, I had both issues. Memory, which was a total joke, and concentration, which made it next to impossible for me to memorize lines for school plays...amongst other things!
Good luck, and take care!!
Meetz
:rock:
Dilantin for 35 years.....and yes, I had both issues. Memory, which was a total joke, and concentration, which made it next to impossible for me to memorize lines for school plays...amongst other things!
Good luck, and take care!!
Meetz
:rock:
seizingbeauty
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Cute Name! Welcome to CWE. I can't speak for anyone else, but I can say that the few months I've been here everyone has been awesome! Hope this place helps you as much as its helped me!
Dilantin was the first drug tehy tried me on. It was the worst of the bunch! I had memory trouble, concentration issues, and found it really hard to transfer thoughts to speach. When I was on it I felt like I was a different person, almost like watching myself do stuff knowing that it wasn't really me. I'm on Keppra now, its been ALOT better to me than many of the other choices!
Dilantin was the first drug tehy tried me on. It was the worst of the bunch! I had memory trouble, concentration issues, and found it really hard to transfer thoughts to speach. When I was on it I felt like I was a different person, almost like watching myself do stuff knowing that it wasn't really me. I'm on Keppra now, its been ALOT better to me than many of the other choices!
Z J
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Jackson,
Nice Name. Yes, I have been on both. The Dilantin side effects weren't that bad, as I recall. They helped me go a year w/o seizures. As to the Keppra, well, let's put this way: I've been put on as many drugs as there are names. The've worked for a couple of weeks, but those drive-by seizures always return. I can't remember what the story was on my Keppra expierience, but it was a let-down, (but that's just my case.)
My memory loss seems to be short term memory. But my long term seems to be getting better. That I can not explain. My other thought is my liver. What is the experience with long term use of Dilantin on the liver? I am up to 20 years on Dilantin. Should I start being concerned about this or am I worrying about nothing. Just curious that's all. Thanks for the input on the input on the short term memory info.
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When I went on Dilantin, it was in 1965, and there weren't a lot of options available...just phenobarbitol. (Ugh!)
I took Dilantin for 10 years and felt like a complete zombie. (People were taking "recreational" drugs back then but there was nothing recreational about Dilantin.)
Aside from feeling like I was stoned all the time, I ended up with galloping gum rot and my hair -- which used to be down to my waist -- turned very thin and I ended up with a short hair bob.
Presently, I am on Lamital, Klonopin and Effexor and I am one happy camper. I hope this helps you...
I took Dilantin for 10 years and felt like a complete zombie. (People were taking "recreational" drugs back then but there was nothing recreational about Dilantin.)
Aside from feeling like I was stoned all the time, I ended up with galloping gum rot and my hair -- which used to be down to my waist -- turned very thin and I ended up with a short hair bob.
Presently, I am on Lamital, Klonopin and Effexor and I am one happy camper. I hope this helps you...