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kleen
kleen

Memory Loss and Loss of Coordination

I won't even type very much because it takes too long. I have taken dilantin for 43 years and suffered some memory loss especally when it came to remembring certain words the other stuff I coped with by makinglists and stuff. I had to get off dilantin nd I was swichted to Keppra which did nothing then I was switched to Lamictal and the memory problems started when my dosage was increased because it was not keeping me from having seizures. I wonder will this go away? Linda

By kleen at Sun, 07/17/2005 - 3:28pm | 2408 views | 13 comments

Recent Comments on this Discussion

I am allergic to Dilatin, but tried Lamictal, and Keppra. I took Keppra for two years, and it only made my seizures worse. Lamictal made me sleep all the time. The Keppra is what caused memory loss for me. so much so that i couldnt focus, dropped out of school...i went off it, and am now back in school, although i have never fully recovered my memory, I can function somewhat normally. They told me the Lamictal side effects would eventually go away, and they never did, so make sure you are communicating with your doctor what is going on.
michel...
I totally understand what you are going through right now. I was on Dilantin for a little while and had some horrific side effects that never really went away. I am currently on Lamictal and have been for the past 10 years. Only in the past few months I have been starting to have seizures again. They are back worse than ever this time around. I have been to the hospital many times in the past few months. I am seeing my family doctor about once every two weeks and I have found a new neuro in the town that I live. I am having gran mal, absencse, and nocternal seizures. They upped my medication but the side effects are almost worse than that of the seizures. I am sick with vertigo, I am tired and my memory is shot. I can't remember things that I had no problem with in the past. There is no way they can put me back on Dilantin because of the side effects but they also could never put me on Tegretal because that made the seizures worse. Right now I am just a human ginny pig while they find out what to use.
AURORA...
Why does something that could cure you from a severe illness can mess you up on another? I been on Dilantin for almost 5 years and before I started drinkig it I weight almost 140 pounds, months later I started loosing my apetite and loosing weight . Now in days my weight is 100 pounds and I don't have the same energy to carry and do things as I did before. I also can't see as clear as I did before, My appearence changed completely! I had guys come to me and talk to me because I had a nice body and looked very mature. Now that I am 23 years old I look like a 16 year old and don't have a boyfriend at this time, maybe is because I look like a little girl and ofcourse I don't have a sexy body no more. What I am trying to get to is that Dilantin it has very bad side effects. Has anyone been trough a change like this with dilantin? or another medication? I am still on dilantin and it does control my seizures more then before, but I am a totally different person outside... and inside ofcourse. Whoever wants to chat about anything I am here. Smile Everyone. Your friend "Elizabeth"
Elizabeth
Hello Elizabeth, Happy Holidays!I can understand a little bit about your Dilantin problems.It does keep your appitite down but the other medications that is taken with it helps to increase your appitite.I have been taken Dilantin now for almost 27yrs. I was keeping grand-mal seizures constantly.I would see the doctors and change medicine's one right after the other.I was taking many diffrent kinds and they never seemed to work with the dilantin. I am taking keppra now I have been taking it now for almost 3yrs.My seizures were getting worse,I was loosing most of my memory, and I was becoming a vegetable.But since I have been on keppra the seizures have improved wonderfully! My memory is improving each blessing day!I am still not married but I have a 23yearold son that God blessed me with!I am very glad that he does not have epilepsy. Dilantin does help you to stay younger looking but it is the seizures that keeps you disgusted, and depressed, and that makes you begin to think terrible things about yourself. I am now taking Dilantin 500mg.and Keppra 1500mg.a day and I'm feeling much more positive about my self.Because I realized that condeming myself does not help me or anyone who is around at all, it just brings you down even more.I look at it this way, if God,intends for their to be a man in my life besides my son then their will be one. Put yourself in God's hands he is always here for us each and every day. Have faith in God! You are a beautiful young woman never give in to your disappointments. Praying to God lets you see new improvements each day!!!! God bless you.Goodbye for now. Diana.
dianam...

I 'used' to play drums, (which requires a significant amount of coordination) and, due to the effects of my anti-seizure meds, have not picked up a pair of sticks seriously in years. I take my meds every day, and am still waiting for the days I can experience control over my seizures. I'm at the point where I'm real close to being on the streets, and if anything, my epilepsy has become worse if not better. Maybe its just me.?

Seruzies
Elizabeth, Different seizures respond to different kinds of medication. This is also true for people. Different people respond to different kinds of medication. There are a lot of people who can have their seizures controlled by just being on one medication. But there are some who need to have two medications, as well as a few more to respond to three different kinds of medication. But what can be tedious and time-consuming for some people, is having to go through the trial and error period, to find out what specific medication is going to be the best control for their seizures. I have been on lamictal myself ever since September 1997. And between October 1997 until November 2001, I was also taken Dilantin at the same time. The bad result with this, was that I had a huge increase in frequency and strength of my complex partial seizures. I ended up going through my second video EEG and the head neurologist on that team found out that one of the two medications was knocking down the potency of the other medication. That neurologist quickly stop me from taking any more Dilantin, and switched me over to a different medication called divalproex. Eventually after 20 months later the complex partial seizures completely stopped because they were fully controlled. But still basically no change whatsoever with the simple partial seizures, up until I started working on a different epilepsy treatment plan, which by the way has to do primarily with eating more natural foods as well with a few other steps, ever since January of this year. The results so far with that is that might simple partial seizures have not only lower down in frequency but also in strength. Another positive note with that is that my bad cholesterol has also lowered down quite nicely. Bruce
grez-monkey (not verified)
Hello Bruce, I am interested in what you mentioned to this gal about eating differently and "a few other steps". Would you mind sharing with me what exactly you are changing-what steps are helping? I am 28 and have had epilepsy for 10 years now. I went from 7 years of Dilantin, untill it had to be increased more and more, till I was over my "legal limit". I was put on Pheno. (bad choice) then now on Lamictal. Last night I woke up with auras, (couldn't sleep-too frightened of a tonic-colonic setting in) so I think I may need to increase my meds again. I'd really like to know alternitive, nutritional answers. Jill
Jill P...
Hi Jill, I understand you are looking for a response from Grez-Monkey. I just so happen to be skimming through some of the posts, and I remember he had suggested this to me once because I am newly diagnosed and I also heard that changing your diet could also possibly help. I found the link to where he posted this info! If you want to contact him he can be contacted at bruce903@hotmail.com http://my.epilepsy.com/?q=node/885066
Butter...

I'm sorry you've had such significant weight loss. I on the other hand have had significant weigh gain. It's not that appetite has increased or eating habits have changed. Quite the contrary in fact. I still stick to a low calorie/fat diet but have gained well over 75 lbs on Dilantin. I'm having quite the difficult time losing it as well. It seems that as fast as i lose the weight it just comes right back.

 

I've been on three different meds since my first siezures when i was 14. I've been on Depakote (AWFUL DRUG) Dilantin and Keppra (another horrifying drug) 

I've had issues with each drug honestly. Depakote just had no effect on my seizures. In fact my instances of having a seizure tripled while on that one. 

Keppra is just all wrong for me apparently. When i took that a few years ago after a rather nasty seizure in which i fell into a nightstand and drove my upper teeth through my lower lip leaving a massive and terribly unattractive scar, I was placed on it. I though i was going to die. In the 6 weeks i was on it my heartrate stayed at a constant 190bpm, i had awful dizzy spells. I literally had to crawl to the bathroom because i just could not stand up without falling down. My eyes twitched constantly as did other parts of my body. My vision was blurred and i could not talk to someone clearly because my words were horribly slurred. I nearly lost my job because of all the time i had to be out because i simply could not function properly. My hair was falling out in massive chunks,on top of this i was still having seizures, and all the doctors would say was oh give it time to normalize.....

After that awful experience i went back to the Dilantin. It has it's side effects too, but they seem to be less  dramatic than any others i have had. The truly annoying ones are the weight gain, the swelling gums and increased enamel wear on my teeth. Both manageable though. I do have pretty rough memory loss. I honestly do not know if that's perhaps some effects of the grand mal seizures or if it's the drug.  Some days are worse than others. But it gets to be pretty bad when you go into the bathroom because you have to pee and when you walk in there you literally forget why you're there. I have days when i can't think of simple words and it's very frustrating. But i would rather have these side effects than to give up my one great joy....I love to drive, and Dilantin has been the ONLY meds that have completely stopped my seizures and allowed me to get my license back.  For that I am indescribably grateful and would pay any price to have that priviledge.

brandy...

Brandy you win on Dilantin....I was in a monitoring unit after having status and they put me back on dilantin and I told them about the rash on my back and they told me it was needed a shower!  I told them it was also on my arms too!  I said I was allergic to Dilantin.  They said I was not having any seizures.  They had a good point!

 When I came home I showered and started to heave!  I went to the doc and she sent me to the ER and said I was havin an allergic reaction to medication!!! Dilantin!

Keppra XR I am on right now and my stomach is burning up but my seizures are doing the best they have done in a while!  I feel bad.  I want to heave.  My vision is bad.  I am dizzy.  It s the side effects.  Yuck!  Hardly any seizure which is great but I feel sick!   I take the extended release 12 of the them a day along w/ 6 of the zonegran.  My poor stomach and liver.

tonialpha

Linda,

I myself was on both Dilantin and Lamictal, and had memory loss. The dilantin was switch to a extend release of valproic (Divalproex) and it took over a year for the terrible complex partial seizures to become fully controlled. Over that same amount ot time, I regain the ability to remember things. I'm still on Lamictal, but also on Keppra.

With you being on dilantin for so many years, it may take some time for your system to clean and clear itself out. Maybe you can do some searching for certain things to do and consume in your diet that may become helpful to speed-up the clean-n-clear and to improve memory. Certian foods, herbs and or vitamins, etc.

I'm going to try to do some searching and asking people some questions about this myself. Seems like a good subject and matter to look into.

What's your status of lamictal controlling your seizures?

Bruce J

grez-monkey (not verified)