Can somebody help? - New member

[qbsquared]

Hi everyone, I'm new to the forum.

I've had a number of seizures, as a result of brain surgery to remove a brain tumor in 1996. The tumor was discovered after I had a seizure.

After removing the tumor, I was placed on seizure control medication - first Tegratol (spelling?), and then Dilantin. After being seizure free for approx 5 years, I slowly discontinued my dosage.

A couple years later, I had 2 seizures, and was told that I would be taking this medical indefinately.

My question has to do with side effects with Dilantin:

I feel "cloudy" most of the time, since continueing my dosage - difficulty focusing my attention, concentration, retaining information, etc. Everyone that I've spoken to about this has never heard of this side effect.

Is this normal? It's very very frustrating. I feel like this medication is making me stupid. I work in sales, and need to be (somewhat) quick on my feet. I understand there's going to be some kind of trade off with taking medication.

Thanks!

[Georgiagirl88]

Hi there,

Welcome to the group. I wish I could answer your question..but I don't have any experience with this. Hopefully, somone here will be able to help. I think you will find alot of support and help here. I am willing to bet you will hear some answers to your questions. Glad you're here!

Michelle

[epileric]

& had the same effects you do. I was on other meds as well but the doctor said that dilantin was probably the main cause of mental fatigue & memory loss. Also make sure to brush your teeth regularly since dilantin has a tendency to make your gums recede.

Check this site out, it should give you more info on dilantin, just click the D in the top row. If you can't find much on Dilantin then try phenytoin which is the chemical name for it.

http://www.nlm.nih.gov/medlineplus/druginformation.html

Meanwhile welcome to the site. I think you'll find the people here to be very helpful & supportive.

[Bernard]

Hi qbsquared, welcome to the forum.

"difficulty focusing my attention, concentration, retaining information" - I think that is the most common complaint I hear about just about every anti-epileptic drug. Everyone tolerates specific drugs differently though. If the side effects from Dilantin are interfering with your quality of life, you can always ask the neurologist to start you on the new drug carousel to see if you can find another that works with less side effects. There's no guarantee that jumping on the carousel won't make things worse however.

[Nancy]

Hi qbsquared ~ I started having seizures in 1990 and my tumor wasn't discovered (g-r-r-r-r) until 2005 so I've been on a LOT of meds trying to stop them. I'll be on the rotten things for the rest of my life too.
It's no fun, is it?
There are SO very many you can try. Right now I'm on Topamax and Trileptal and I'm doing OK. Each med had very different effects on each person.
Can you just talk to your neurologist and tell him you want and need to try something different - that you have to get off Dilantin?

Welcome aboard. We're wishing you the best.

[josieb]

gbsquared:

I also wanted to welcome you to the group and let you know that I was on Dilantin for a very long time. I was initially placed on it around 1994 and it eventually got my seizures under control for an extended period. Then after finding a tumor and having brain surgery, I was placed back on the Dilantin and could not tolerate it all. My doctors have since weaned me off it completely and my seizures have been controlled for almost a year with different meds.

On the Dilantin, I had a lot of problems with staying focused, concentrating and was "out of it". As noted by Bernard, there appear to be the same kinds of complications and side effects with all anti-epileptic drugs. It seems that each person has to just continue trying until he/she finds the right med(s)/dosage(s) that work for him/her.

I wish you well, and again, welcome to the group!
Sincerely,
Josie

[RobinN]

Welcome qbsquared - Glad you joined us her at CWE

My daughter has had seizures for two years. She had terrible results on meds, so we are trying it med free, using nutritional changes, vitamin and mineral supplements and neurofeedback therapy.

The side effects were unacceptable all the way around here.

[Birdbomb]

Welcome qbsquared

I took Dilantin for about 4 years and suffered the same sysmptoms plus a few others. Balance issues and word reterival problems that still plague me today. Most anti-epileptic drugs affect our mental processes. It's a trade off we have to endure to keep seizures at bay. The thing about dilanin is there are long tern problems with usage over the years. I recall it effects the brain stem and also causes nerve damage. It is very effective and has been around a long time.

[JLynn]

I havent taken that, or any other really strong epilepsy med. But recently I was having a horrible time, and the doc increased my med, then another added yesterday. I worked my way up to the new dose and yesterday I felt so... sick, and last night I woke up so... many times. I have memory trouble too, fogginess, and am pretty sure its due to long term use of medication.
Anyway, today, I went back to my old little dose, dont even care if I have a seizure, because they dont kill me, and Im not going anywhere. And you know what, I think I needed the increase, but couldnt handle it today, or everyday, and today I feel so... much better than I have in those drug induced days. In the beginning diazepam was a miracle, but at higher doses, its a complete puke sick feeling that I cant deal with.
Im going to tell the doc that I only want extra to take on really bad days, and not everyday, as it is just another kind of feeling like crap.
Sorry to make this about me. I guess it gave me the opportunity to vent to.
I hope maybe you can reduce your meds some, so that you dont feel so drugged. I completely (I think ) understand.
best wishes to you,
JLynn

[brain]

Squared!

Welcome to CWE! I was on Dilantin / Phenytoin (both brand
and Generic) for a very long time. I never had any problems
with it, and always considered it as "my baby" because it
worked - whether as a mono (by itself) or in conjunction
with Klonopin / Clonazepam. I also had been in all ranges of
Dilantin / Phenytoin. Unfortunately, it also wrecked a havoc
on my teeth, gums, and my body; and is now on the
anti-epileptic drug allergy list. I cannot take it anymore after
being on it for decades. It did its job in controlling the seizures
exceptionally well over all the other anti-epileptic drugs.

But as far as for side-effects; I had none. I could easily
swoop down 200 mg or 900 mg in one sitting and walk out
the door and it would not affect me or impact me, because
I needed no titration on that drug, it was as if was part of
my body and belonged there.

But this isn't to imply upon others, but I must emphasis this:

ALL anti-epileptic drugs OUT THERE COMES WITH SIDE EFFECTS!

• Some individuals may not experience any side effects
• Some individuals may experience a minimal side effects at first but will go away after a period of time (which they call it a 'honeymoon phase') during the titration of the medication.
• Some individuals may experience a mild side effects that are tolerable but can stay with the medication(s). (It's either take the medication(s) or risk the seizure(s) which in turn 'may' endanger you and put you at a risk for brain damage)
• Some individuals may not experience any side effects at all for a period of time, then develop a tolerance (or resistance) - then side effects begins to manifest; and if ever this becomes the case, then one must consult with their Epileptologist or Neurologist; for it may be that the dosage may need to be decreased or it may be that seizures are 'changing' and you need to be re-evaluated again. It may also mean it might be a time to change your anti-epileptic drug or anti-epileptic drugs or adjust them accordingly or even having to have a full Neurological Work-Up.
• Some individuals develop side effects not long after beginning the medication and it must be discontinued and monitored by the Epileptologist or Neurologist. DO NOT EVER STOP THE MEDICATION YOURSELF!
• IMPORTANT NOTICE: Some medications needs frequent or sporadic blood level work up. There are some Epileptologists and Neurologists that do not follow through on this, so it pays to do your homework on the drugs you are taking and to ask questions about the drug(s) you are on.
• EMERGENCY NOTIFICATION: If at any time you experience: shortness of breath, chest pains, numbness that radiates especially to your left side of your body, drooping of your face, sudden unexplained rashes that just came up, or experience anything that is unusual to you, thoughts of suicide - Call your Epileptologist or Neurologist or 911 or Go to the Hospital Immediately. Do not consult with CWE - We are not Medical Doctors here! The Doctors / Hospital will take care of you and evaluate you and take care of you.
• This is NOT an exhaustive list - only a BASIC LIST.

I hope this above helps you out tremendously!

[skillefer]

Hi qb! Welcome to CWE. Feel free to ask questions, rant, or just chime in. Unfortunately, many of us have memory issues. That can be due to either the meds or the seizure activity or both.

[Meetz1064]

Cool name! And welcome to CWE!!!

I took Dilantin for a total of 37 years.......and didn't have prolbems with it until the last 7 years or so. And then, yes, I began to suffer the same problems that you're talking about. So, no, you're NOT losing you're mind. It DOES happen......

[Ptolemy,son of Lagus]

I took tegratol and dilantin for years - both cause drowsyness and weakneww - i stopped the dilantin a few years back, and did not have a problem with siezures. I can't say I noticed any change with side affects, probably because of the tegatol. I am slowly coming off tegratol and switching to Lamictal, because the tegratol does not seem to be working the way it should. Unfortunately, many antiepileptic drugs have similar side affects. Most people get used to them, to a degree.

Hi everyone, I'm new to the forum.

I've had a number of seizures, as a result of brain surgery to remove a brain tumor in 1996. The tumor was discovered after I had a seizure.

After removing the tumor, I was placed on seizure control medication - first Tegratol (spelling?), and then Dilantin. After being seizure free for approx 5 years, I slowly discontinued my dosage.

A couple years later, I had 2 seizures, and was told that I would be taking this medical indefinately.

My question has to do with side effects with Dilantin:

I feel "cloudy" most of the time, since continueing my dosage - difficulty focusing my attention, concentration, retaining information, etc. Everyone that I've spoken to about this has never heard of this side effect.

Is this normal? It's very very frustrating. I feel like this medication is making me stupid. I work in sales, and need to be (somewhat) quick on my feet. I understand there's going to be some kind of trade off with taking medication.

Thanks!