dilantin VS Phenytoin

[mooselips]

Hi all, Perhaps you may remember me, my husband was diagnosed with Temporal Lobe Epilepsy with generalized seizures in October of 2007, and placed on Dliantin 100mg. 3X a day. (We thought it was dilantin)

Well April 6th he had another seizure while sleeping, and I took him to the ER later that a.m. and his level was 3.3 Now I know for a fact he has been compliant about taking his meds.

Meanwhile, I read an article stating dilantin is much better than its generic conterpart, and I looked it up, and low and behold, my husband was on generic phenytoin. We had it changed this a.m. to actual Dilantin.

We just cannot figure out why his level would be so low, when he was theraputic in January.
And to top it all off, we are snowbirds, and in Florida until May. But the Dr. in the ER here was wonderful, they bolused him with 1000mg. of dilantin, 500mg. by mouth, 500mg. IV He has a script to get another level next week.

Any thoughts?
Thanks,

[brain]

I've been on Dilantin and Phenytoin,
never had a problem with either one,
and I've been on it for a very, very
long time (decades), but unfortunately
they had to take me off because of the
well known long term side effect - it
wrecked a havoc on my teeth (and gums),
so I had to be put on something else.

Dilantin at 100 mg x 3 is only 300 mg a
day. To me, that's a pretty low dosage,
but that is up to his Doctor of how much
he should be on. I would have a discussion
with the Doctor as far as why he is on the
Dilantin at that low of a level. It's not so
much as the Brand / Generic - it's just that
it is a pretty low dose there. I am not a
Medical Doctor here; but there has to be
a reason why and you need to find that
reason out. (I had been on anywhere from
400 mg, 400/500 mg alternating, 600 mg,
900 mg on Dilantin / Phenytoin for years
in all different ranges as mono (solo) or in
conjunction with another anti-epileptic drug)

We can't give you advisories here, but we
can recommend that you have a talk with
the Doctor as why this has been set for
that amount. And is he seizing? Has there
been any seizures recorded? Has any video EEG
been performed - if not, then ask for one to
be performed so the right medication, if he
does have seizures - may be provided. All
these things and more - needs to be discussed
between you, your husband, and the Doctor.

Hope this helps!

[Bernard]

Stacy (my wife) has been on Dilantin (brand name) for a while and even taking the brand name, her blood levels have fluctuated when she was diligent in taking the pills. There are many factors that can affect the blood syrum levels. IIRC:

• dietary protein - dilantin/phenytoin binds to protein, so you need to eat sufficient quantities or the drug will just pass through the system
• menstrual cycle (see Phenytoin Levels in Catamenial Epilepsy for example)
• heavy perspiration

I'm sure there are many other possibilities.

[mooselips]

Thanks for your replies.
He is on Dilantin 300mg. T.I.D.
Off the Phentoin Extended release.

Since he's had his seizure, (April 6th) he's kicking again at night, during his sleep, which makes me nervous and awake all night, cause I'm so worried he's going to have another seizure.

We are from Ohio, and presently in Florida as Snowbirds, from Feb.1st to May 1st .
We previously had a Neurologist who initially prescribed the Phenytoin. Then she went on a month long vacation after he was newly diagnosed, and left us high and dry.

SO...his family Dr. took over, and kept him on the same dose, the Phenytoin 300mg. Extended release. He had a level done the end of January and he was therapeutic.
But since we have been here he is SO much more active, and has pedaled his bike 300 miles already.

I encouraged the E.R. Dr. to just place him on plain old Dilantin, after reading reports of low blood levels, and breakthrough seizures. (maybe not so much a good idea?)

We have an appt. on May 8th with a Neurologist at the Cleveland Clinic, in Cleveland, that's where Gary had his week long ambulatory EEG, and thus the diagnosis from the Neurologist who is NOT associated with the Clevelnad Clinic. (he just had the test there)

I have also read some reports of prescribing Dilantin per weight. In fact, between 4 to 6 mg. per kilogram.
My husband weights approx. 190 pounds, which would make him roughly 86 kg. So he should be taking 430mg. of Dilantin a day, if they go with the 5mg. per Kg. if those estimates are correct.

I just DON"T want him to have another seizure before we have the neurologist appt.
Would it harm anything to up him to 400mg. a day?
I know I am not a physician and do not want to fool with his meds. but I need some advice here.

He'll get another Dilantin level next Tuesday and then the family Dr. said to call him with the results.


Sorry this is so lengthy, I'm just about scared to death for him.

Thanks,

[brain]

Well:

If this is any of assurance to you,
I'm only 5'3 and was only 115 lbs,
and was taking all sorts of Dilantin or
Phenytoin ranges ...
but if you are that concerned of the side
effects or anything and unable to contact
the Neurologists ...

THEN TAKE HIM TO THE HOSPITAL! LET
THEM EVALUATE HIM FROM THERE!

[mooselips]

We have been to the E.R. on Sunday morning.

Not much else to do, but wait until his level is drawn, I suppose.

I am just opening up some stuff I happen to think of, for discussion, NOT necessarily, something right, or wrong, just discussion.

[BuckeyeFan]

I was on Dilantin for 22 years. The dosage was gradually increased over the years from 200 to 500. Four years ago, I was switched to Phenytek. It is also a time released form of phenytoin just like Dilantin, only from a different pharmaceutical company (Mylan Bertek). This is a brand name which has been successful for me in conjunction with keppra.

I take staggered doses to average out to 550 mg per day. I weigh about 210 right now.

It has been my experience that wieght does not play a large role FOR ME. I have been anywhere from 185 - 255 over the years. Many factors can impact the theraputic level and each person will be different, so please work closely with your doctors to find the balance you need. Don't increase it by yourself, as you can get too high and that can cause problems as well.

In the past, when I would have a seizure, I would test low on my Dilantin level at the ER even though I was taking my meds. I was never able to get an answer from the doctors if the seizure would possibly deplete the Dilantin or if it was another factor. I was always suspicious that the seizure would bring the level down.

Also - watch out for grapefruit. Seeing how you are in Florida right now, be aware that grapefruit can impact dilantin.

We'll turn on the heat lamps back here in Ohio and get it warmed up for you. The last few days were great, now it is back to rain.

[mooselips]

Thank you Buckeye Fan,
(We are fans too)
My husband had an epigastric aura this a.m.
So undecided what to do, I placed a call to the disappearing Neurologist at 4:30p.m. I was truly confused on what to do. She hasn't called back yet....

Being down here in Florida is a problem.
Maybe if we return next year, which my husband wants to, we should make an appt. for a Neurologist down here in case of any future problems.

It's funny, when he was first diagnosed, we figured, here you go, take a pill, okay, all better. NOT.

Hopefully the Cleveland Clinic will be able to provide more answers and support.

One more question.
When/If he has another seizure, am I always suppose to call 911 for support, and oxygen if needed?

Buckeye, do you live in Ohio? And if you do, may I ask what part?


Thank you all,

[BuckeyeFan]

We live in the west central part of the state. Lots of Buckeye fans around here. We were in the upper 60s for a few days and now the early flowers are finally blooming. A few trees are starting to open up. It has been a pretty gray spring up until now.

I have no experience with The Cleveland Clinic, but I have heard it is top notch.

Your idea about getting a neurologist established down there now is a good idea. That would give you somebody in emergencies.

As far as the EMS. Personally, I would continue to call them for seizures until a) you have a better comfort level how to handle them yourself and b) a trusted doctor tells you it is OK not to call each time. I probably had E for 2-3 years at least before we did not call.

God bless both of you!!

[BuckeyeFan]

Forgot to ask one question. Did your husband have any problems with the Dilantin through the IV???

[mooselips]

Thanks.

Night time is when I really get frightened because he had the last one during his sleep.

I wish we could get a level everyday (ha) so I wouldn't be so apprehensive.

We live 30 miles South of Clevelnad in North Royalton Ohio, close to where the buzzards come back to every March!

[Bernard]

When/If he has another seizure, am I always suppose to call 911 for support, and oxygen if needed?

If he goes status or injures himself during the seizure, you definitely need to call for an ambulance. Otherwise, it's not really necessary IMO. Have you asked his neurologist(s) this question?

[mooselips]

Buckeye,
He had some slight burning at the injection sight, but they had it diluted with another bag, so he didn't seem to complain too much, plus they ran the 500mg. over 1 hour.

Bernard,
We have a disappearing Neurologist. (see above) In fact, I called her today, without any reply (as of yet)

We do have an appt. with a neurologist at the Cleveland Clinic when we get back to Ohio May 8th.

[mooselips]

Sorry, I have another question.

What is a Video EEG?
Is it when a person stays in the hospital, like an ambulatory EEG? Or like a sleep study?

When is this deemed necessary?

I read the Epilepsy 101, and didn't really find my answer.
(honest I read it...)

Thank you, ....again.

[brain]

Sorry, I have another question.
What is a Video EEG?
Is it when a person stays in the hospital
Thank you, ....again.

video EEG - Video Electroencephalogram

Is when they block you (admit) you in the Hospital
(and in some cases, there are some equipment that
permits units to be brought home where patient is
in bed, like after surgery); and you are monitored
24 hours continually - usually on a Digital Montage
Machine with a Camera.

Some Doctor's order patients confined to beds,
others are permitted to roam about being on a
cable (ranges anywhere from 7 feet to 12 feet
long average).

This is the typically the best way to monitor and
capture seizures, but is also the most expensive
type of EEG out there. It's usually reserved for
patients who are probable candidates for surgery
or to wean out the other issues that might be a
factor.

Unlike other EEG's - these video EEG's are often longer
term, and the electrodes are glued to one's head,
rather than "pasted" on - thus, the itching after so
many days.

The Flip-Side of the coin is, they don't always get
the seizures because patients are often 'relaxed',
and it's not unusual for them to be discharged with-
out anything recorded.

However, I have had video EEG's and have had seizures
recorded, and with the video, they are able to
observe what happens during that seizure mode.
So with the two and two, it helps the Doctors to
determine what is going on and to pinpoint along
with the Scans to align everything more precisely.

Something that a standard EEG, ambulatory EEG, qEEG, QEEG,
etc - cannot offer - although they do look at those
previous EEG reports for comparison and studies
to get to the bottom line of everything.

[super]

I have been on Dilantin (or Phenytoin) since about 1963 and most of that time have been taking 400 mg per day as mono therapy. As time has progressed and possibly due to weight gain 400 mg on its own is insufficient for me to satisfactorily control seizures with a secure element of confidence. However, in the main this drug has been extremely effective treatment for me during my working life) now retired!! thank goodness.
Have noticed no problems with teeth and gums but there are a number of drugs and substances that may interfere with the Dilantin blood levels and for that reason I suspect Neurologists are no longer not necessarily prescribing Dilantin as a first option treatment. I have heard that grapefruit can be a problem so avoid if possible.
I would not have thought 300 mg per day was a high dose but unfortunately you have to rely upon the specialists when altering the drug regime, as there may be other factors to be considered. Beware or alcohol abuse, sleep deprivation, stress, inhaling Eucalyptus, taking of some anti-inflammatory drugs etc etc all of which have at some time, had an impact upon me. There is a long list of interactions between Dilantin that your pharmacist and medical practioners will have knowledge of.
Generally the patient will know whether or not a drug is working well for them or not.
I trust that sharing this small amount of information with you has been of some use.

[BuckeyeFan]

Beware or alcohol abuse, sleep deprivation, stress, inhaling Eucalyptus, taking of some anti-inflammatory drugs etc etc

Huh ... after 26 years of dilantin, the Eucalyptus is a new one to me. I had never heard that before.

Super also referred to anti-inflamation drugs. I have always been warned to stay away from Tylenol and its generic forms. A few here and there are not bad, but Tylenol can be hard on the liver. The same is true for dilantin (and some other anti-epileptic drug). A good question for your doctor next time.

[mooselips]

Thanks all for your replies.

My husband, let's just call him Gary, I'm tired of typing "my husband"...LOL Has had 2 total knee surgeries in this last year, so he still has some discomfort, and during his last seizure, hurt his shoulder. He occasionally takes 800mg. Ibuprofen as prescribed by his family Dr. and an occasional percocet.
Perhaps once a week for the percocet, maybe three times a week for ibuprofen.

The disappearing Neurologist called us yesterday....she wondered what happened to us, and I told her "you left us stranded without a referral" anyhow, she apologized, said she was ill, and said to call her with the Dilantin level on Tuesday. So now I'm rethinking the Cleveland Clinic appt. as this Neurologist is closer to home...8 miles versus 25 miles. But I want him to have the best care available.

She said she prescribed Dilantin, not the phenytoin, so she was glad he was back on the Dilantin. (The family Dr. most likely prescribed the phenytoin extended release.

So...now after going to the E.R. last Sunday, he has come down with a MISERABLE cold....go figure.
Yesterday he slept off and on all day, most likely a combo of Dilantin and his cold.


Thanks all,
Have a great day...


Eucalyptus, I'll have to research that...I think the cough drops I gave him, had it in it...

[super]

Thanks all for your replies.

My husband, let's just call him Gary, I'm tired of typing "my husband"...LOL Has had 2 total knee surgeries in this last year, so he still has some discomfort, and during his last seizure, hurt his shoulder. He occasionally takes 800mg. Ibuprofen as prescribed by his family Dr. and an occasional percocet.
Perhaps once a week for the percocet, maybe three times a week for ibuprofen.

The disappearing Neurologist called us yesterday....she wondered what happened to us, and I told her "you left us stranded without a referral" anyhow, she apologized, said she was ill, and said to call her with the Dilantin level on Tuesday. So now I'm rethinking the Cleveland Clinic appt. as this Neurologist is closer to home...8 miles versus 25 miles. But I want him to have the best care available.

She said she prescribed Dilantin, not the phenytoin, so she was glad he was back on the Dilantin. (The family Dr. most likely prescribed the phenytoin extended release.

So...now after going to the E.R. last Sunday, he has come down with a MISERABLE cold....go figure.
Yesterday he slept off and on all day, most likely a combo of Dilantin and his cold.


Thanks all,
Have a great day...


Eucalyptus, I'll have to research that...I think the cough drops I gave him, had it in it...

Just wish to clarify Eucalyptus. I doubt know whether it is listed, but on more than one occasion I have inhaled Eucalyptus for head cold whilst taking Dilantin which was followed by a grand mal seizure after having been seizure free for several years, do not believe coincidental.
I repeat this has happened on more than one occasion. Likewise Ibuprofen has a similar reaction upon me. Pharmacist not surprised when I informed him about Ibuprofen, no comment received about Eucalyptus. This is my experience which does not necessarily mean others will have the same or similar reactions, but suggest extreme caution when mixing Dilantin (or phentytoin in my case) with other drugs or substances. There is a long list.

[BuckeyeFan]

You can go to this web-site and input any medicine, over the counter or prescription and it will come back with possible interactions.

I think this is a great site for people who have multiple medical issues being treated by multiple doctors.

http://www.drugs.com/drug_interactions.html