Questions for Dilantin users

[Wolf82]

Is any one here taking Dilantin like I am I've been takeing it for the past 3 years now and just wondering if I'm the only one.

[Bernard]

Hi Wolf82, welcome to the forum.

My wife is currently taking 400mg Dilantin. I think Ranman may also still be taking Dilantin. I'm sure there are others here on it too.

[brain]

Wolf!

Glad to have you here at CWE! I've
been a very long time Dilantin user
unfortunately after so many years
of being on it had to be taken off of
it because it wrecked a havoc on my
teeth and gums ... however, you also
posted on another thread ...

In lieu - I had responded:

=========================

WOLF - If YOU are experiencing
any SIDE EFFECTS from DILANTIN:

1) You should consult your Doctor
2) You should have your blood (lab)
work-up done to have your level
checked to make sure you are in
the therapeutic range.
3) You should consult your Doctor
about what you are experiencing:
You may need to have the meds
adjusted or be put on something
else ~ You might be experiencing
AURA(S)!

See CWE's POLL:

Experience AURA or AURAS?

[3tomaras]

I had taken Dilantin since I was 10 and on it for 30 years (age 55 now) M.D. detemined since I was diagnosed with osteoporosis at 44..Dilantin was a major culprit and pulled me off.

[Mr. Pibb]

I have been on this med. Dilantin for the better part of thirty-five years with a break or two to try Depakote and Depakane and they both worked aside from the stomach troubles that they gave me. Now my body is telling me if something out there will work get off of it as my joints are starting to hurt,could be that I am getting close to fifty but more than likely Dilantin has some play in the way that my body feels. Work with a Dr. to see what options are out there and do your homework as well so when you visit you can be prepared to be part of the answer not the equation.

Jerry

[keyna]

Welcome, I took dilantin as a child , I have also been taking 500mg for about 5yrs now. Any questions I'll try to help. I also am having joint pains like Mr. Pibb, the Dr.'s think it's because I was on it for so long as a child, and then being on it for so long now.

I also take 1000mg of depekote 2 times a day.

[Stacy]

I've been on Dilantin for quite a while now, and do notice side effects. I don't like it. I don't want to be on it, but until I find the cure for Epilepsy, I'll do what I have to do. Check into other vitamins and minerals that may help.... tons of symptoms in addition to depletion of teeth and gums (but hey, you can get a whole new set these days ) Depression and all kinds of other things. Hormones are in conflict with Dilantin also, and my hormones getting out of balance are a major trigger for my seizures.

The only advice I can give you right now, is for you to record / journal your every move for the next month or two. Consider: How much Dilantin are you taking? How much sleep are you getting?, how is your body absorbing the daily minerals it's supposed to get? How do you feel? (not just once in a while, but record every mood shift, up or down). How 'bout exercise? Your heart should be taken into the equation as well. Consider also the amount of Oxygen that gets into your system. Finding a pattern will bring you one step closer to solving your problem. That's all I can think of at the moment, I gotta run... lots to do. good luck

[BuckeyeFan]

Welcome to CWE! I hope you find lots of answers here. There are many threads on dilantin and many other drugs.

I was on regular dilatin from the start of my epilepsy for 22 years. The dosage started at 200 mg and increased over the years to 500 mg. About 4-5 years ago, I was switched to phenytek, which is simply a time released version of dilantin. I take 500/600 mg on alternating days to achieve the balance of 550 mg which seems to work for me.

Here are a few important things I have found with dilantin. You need testing of blood serum levels to ensure that the levels are effective, but not toxic. You should also have regular monitoring of your liver enzymes as dilantin is processed through the liver and can create some very serious issues there, though not often (mine used to be elevated, but are usually OK now). Last are the long list of side effects, I think my worst are probably loss of concentration/focus, some depression, poor memory.

I also take keppra with the phenytek. As with most anti-epileptic drugs, it can also have a long list of side effects. I think the most important thing is to find the right combination of meds that keep you seizure and aura free while leaving you with tolerable side effects.

I am doing more checking on dilantin myself due to how long I have been on it. I am 46 and want the rest of my body to hold up a little bit longer.

One thing I have found recently is that B6 helps control emotions caused by keppra, but it may interfere with dilantin absorption. I need to learn much more about that.

Best of luck to you and I hope we can be here for you in the future.

[maureen]

Hi,

I've been taking Dilantin for about 3 years now. I am tapering off, replacing it with Keppra. I had the gum problems, but I couldn't stand the problem of losing my mind on Dilantin. I couldn't complete a thought. As I am tapering off gradually - over 3 or 4 months from 300-400mg daily now I'm on 100mg, I think I can see improvement in my mental capacity.

Hope this helps. Everyone here offers the best, well thought out advice!!

Maureen

[wvueers]

I took dilantin 28yrs ago. I took it for about 5 yrs. Two years ago i had some grand mals and they put me back on it, i was also taking keppra. The problem i had with keppra and dilantin is i lost 20 pounds. The epileptologist doc took me off and put me on lamictal. I did gain back the weight. TOO MUCH

[Meetz1064]

for 35 years, and my poor body is paying for it now. My joints ache like nobody's business. My gums aren't the greatest either. My memory......what was that? It's gotten sooooo much better since I've been off it.....and I was only on 300 mg a day....

[RanMan]

Here are a few important things I have found with dilantin. You need testing of blood serum levels to ensure that the levels are effective, but not toxic. You should also have regular monitoring of your liver enzymes as dilantin is processed through the liver and can create some very serious issues there, though not often (mine used to be elevated, but are usually OK now). Last are the long list of side effects, I think my worst are probably loss of concentration/focus, some depression, poor memory.

I'm on 375 mg/day with 130 mg/pheonobarbitol.

I've taken Dilantin with Pheonobarbitol since 1979. As well as the side affects you've already mentioned, I also have:
- Stigmatism
- unwanted hair growth
- depression and mood swings (as you mentioned)
- short term memory loss
- very poor gait and hand/eye coordination
- ERECTILE DYSFUNCTION
- slower reaction time, can't make those quick decisions anymore so as a result of that, was demoted from supervisor (of 21 years) to Admin clerk.
That was like a slap in the face so I ended up taking an early retirement package at age 47. Since it was caused by medical purposes, the employer let me "MEDICL" retire at age 47 instead of the usual 55 or 65.

- if I drink 3 beers (my limit) I get totally pissed. One beer or alcoholic beverage is usually enough for me.

There are other minor side affects but can't think of them at the moment (b/c I've had them for so long that it may be normal).

Randy

[Mr. Pibb]

We all list the common side effect that we notice or are noticed by others. But wouldn't it be interesting if we really new al those tiny side effects that we simply accept and take as the way life is for everyone but in reality aren't.

Jerry

[RanMan]

We all list the common side effect that we notice or are noticed by others. But wouldn't it be interesting if we really new al those tiny side effects that we simply accept and take as the way life is for everyone but in reality aren't.

Jerry

Very interesting comment!!!

[crlarne]

what are you taking now?

[brain]

Ok, just to chime in:

I have taken Dilantin for far too
long - anywhere from 200 mg BID
(400 mg daily) to 300 mg TID (900
mg daily) - as a mono (by itself),
or with Klonopin (2 mg HS - bedtime),
or with other anti-epileptic drug's ... while there had
been periods of time where I was off
of Dilantin for a short time, but I always
ended up being right smack back on it.

I had been on it for nearly 25 years!

NOW - I have NOT been on Dilantin for
7 years (with the special exception of
where I had no anti-epileptic drug and no neurologist,
and had a Tonic-clonic and my Cardio-
logist prescribed me at my request for
Dilantin to tide me over until I saw the
epileptologist coming up as I knew what my
dosage was, for 11 days only).

It is of extreme interest, out of all
those years - while Dilantin has been
SO WONDERFUL to me, I cannot take
it anymore because it's wrecked a
havoc on my teeth and gums.... On
March 10th, in the ER - they did a
Dilantin Level check ....

My Dilantin Level was STILL showing
up:

Dilantin 2.5 - L (L for low)!

AMAZING!

That Anti-convulsant / Anti-epileptic
Drug is STILL in my system! It's
mind boggling!

I will scan it and I currently am on
Zonegran 400 mg (200 x 2), Klonopin
.5 TID, and Folic Acid 2 mg AM.

Zonegran was started in Sept 2006,
Klonopin was started back again in
December 2006, but Folic Acid didn't
join in until Spring 2007.

:::: scratching head ::::

[crlarne]

What does folic acid have to do with seizures. I thought it is a mineral. How did you know to take it? Did you ever take a dilantin in a capsul white and red. that is half white and the other red.
thanks

[NaderH]

Am I correct that dilantin causes malabsorption of folic acid? I read something about this. Folic acid comes in food but dilantin affects how it is absorbed by cells.

[crlarne]

I could not ajust to the new dilantin. My doctor put me on lyrica 75mg twice a day. It messed up my balance, but no seizures symptoms. After a few days I really staggered around, just didn't have the buzz. It was the weekend, doctors office was closed so I used my own judgement. I went to one 75mg per day. My balance immediately got ok. I don't have much tolarance for drugs. I get overdosed very easily. after about 3 hrs on the 75mg, my vision blures. It was worse on twice daily. I am going to ask the doctor to let me try one 25mg three times daily. If that dosn't stop the vision problem I will cut back 1 pill, then take one 25mg twice daily. I like lyrica, I feel normal, which is what we all want. (except for those two little things, it has been great.
The dilantin probably does cause malabsorption of folic acid. When they put me on it, nobody told me anything about bone loss, gum problems. If they had I would have ask, what else do you have. I am glad to be off of the new dilantin, I have had a hard time since the change in October. I went to the doctor, and nobody knew anything about the change. I found out from you guys.

[RanMan]

crlarne,
I've been on dilantin since 1979. At that time it was the most common anti-epileptic drug out there and not as much was known about it at that time.
I found out last year that I had a SLIGHT bone density problem so now I take calcium vitamines and vit. D as well with the dilantin and the bone density is actually getting better.
My liver is in great shape (it helps that I don't drink) I have my liver enzymes checked every 3 months.
Everything is great and my seizures are controlled.
I do have lots of other side affect from the dilantin (as I mentioned in an above post) which I've learned to work around but all things considered, I'm in great shape (I guess I'm one of the lucky ones)

Randy