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toxic dilantin level

Hi to everyone,  I had a dilantin level surge up to 60.4, has anyone had a level that just surged this high before? I felt i was insane and no one could tell around me that i was out of this world, felt like i was living a bad dream.  I can not think straight and it's been over a month since this happened.  I take 400mg a night. 

david

Comments

Re: toxic dilantin level

Hi

Do you use the Pzifer Park Davis dilantin.  If so have you switched to the new formulation recently.

Half orange/half white capsule?  I became toxic after doing.

Re: toxic dilantin level

thanks for your response, i am taking half orange and white now and the ones i use to take not long ago just had the orange strip in the center.   They put me in the hospital for 5 days and did a lumbar pucture, mri and an eeg which all came back negative along with blood test except for the dilantin level test being high.  they could have asked me about the new pills and i don't know what i would have answered in that state i was in.

thanks  david

Re: toxic dilantin level

hi, If its any consolation i too had an increased dilantin level beyond my normal elevation of 20..the only differences i made was switching to the half orange\white band..and purchasing meds through the mail. other than that i cant figure out why i keep going up unless its the chemical compounds  of the newer dilantin.. good luck .babzy

Re: toxic dilantin level

Where did you get the new dilantin from?  Medco?

Re: toxic dilantin level

Walgreens!!!!

Re: toxic dilantin level

The first toxicity problem which the Neurologist initially denied was when I could not walk or my gait was off after brain surgery.  The Neurologist at that time felt I needed a spinal tape.  He took a look at my back and took me off of the Dilantin and said that explains your gait problems!

Recently 30 years later they tried to convince to try it again and I am still allergic to it.  Just be careful!

Re: toxic dilantin level

i have been on dilantin for about 3 yrs 400mg the generic type.here in the last few days i have been drunk acting cant hardly walf speech slurre and my eye sight is messed up.when i had insurance i was takeing phenetek and done just fine what should i do about my current condition

Re: toxic dilantin level

First thing, go see your doctor and get your levels checked. You need to know if you are toxic or not. The thing I learned from my experience last year is that I should have been having my Dilantin levels tested on a regular basis, and wasn't, which led to my toxicity.

If you are toxic, your doctor will tell you what to do about it.

It has been over a year now for me since my experience, I have been off the Dilantin, just on Topamax and have had no problems at all since.
WW

Re: toxic dilantin level

Absolutely! WW is right! Dilantin can really mess you up! Don't let the doctor put you off. Of course, if you have a good one they'll get you right in for a blood test. They should be checking your blood levels about every thirty days or something like that! You sound like you're just starting the overdose or toxic level. You need to get in! If they won't see you, GO TO THE HOSPITAL! Or to your GP... someone.. anyone that is willing to help you and check your levels! Dilantin is not something to put off if you are getting overdosed on! So don't put up with the nonsense that these people sometimes give us. Demand that they help! As my mother tells me.. the squeaky wheel gets the oil!

Crystal

Re: toxic dilantin level

Did you have a good therapeutic level before you changed to the new half orange/ half white pills.

Were they the only variable causing your toxic level?

I  was told that I was the only patient experiencing problems with the new pills.

My level at the time of the reaction was only 24.5.   I cant imagine what a level of 60 would have done.

Are you having your level adjusted now and is it lower and stable?

Re: toxic dilantin level

I always had very good control of level except the last year, I do have new dilantin now for the past few months but previous to that it could have been new and old dilantin being filled back and fourth or just the new, got to find out.  I knew something was different about the way the pills looked but just blew it off because the pharmacist said nothing or the neuroligist.

So far no other causes, my internist is going to look at all the tests they did in the hospital(mri, blood,lumpar punture,eeg) which came back negative from the hospital.  I guess it's his suspision the pills could be the problem being everything came back negative  but he is going to look at it all and i will let you know what he concludes, several times he has figured out problems that a specialist has missed.

60 feels bad, the best way i know to describle it is being in the bad dream state while awake and have no understanding what is going on, completely detached from reality and trapped yet know one really knows until they talk to and then they know you are totally gone. 

I will find out today what just the dilantin levels is.

david

Re: toxic dilantin level

David,

The generic version of Dilantin has caused a lot of problems for people.  That's because the way it metabolizes can vary from one manufacturer to another.  If you're going to go generic, I'd suggest to stick with the same manufacturer.  Your neuro can write you a script asking for you to stay with a specific manufacturer.  I did this for my daughter when our insurance company made us go to the generic form of Zonegran.  If your pharmacy says they don't carry it, ask them to order it. They should be able to...especially with one of the bigger companies like Walgreens, CVS, etc.

 Second, when my daughter was on Dilantin and even though it was the brand name, her levels fluctuated a great deal.  We always had ours done at a trough level.  It was the craziest thing.

~Karen

Re: toxic dilantin level

18.5 blood level reading now, that use to be about a constant reading on 600mg through the years just now i am on half that at 300mg for 10 days, will see if it stays there but i bet it doesn't. still waiting on internist to recieve records

 david

Re: toxic dilantin level

Then why am I being treated like I am a crazy person with levels of 113?

Re: toxic dilantin level

I was at 100... i think they use different units for the range.

ours is 40-80.. (don't know the units)

the ones these guys/gals are talking about it 10-20 I think

WW are you canadian?

Re: toxic dilantin level

No, Australian. But therapeutic level is also 40-80 here. So if you were at 100 and experiencing toxicity, then 113 would fit in a toxic range?
I was wondering why they were talking about 24 being a high range, and if there was a difference country to country.
Experience of the past week has been very traumatic and I have been treated like I have mental problems, but I didn't know there were even these side effects possible, and the facial contortions were terrifying. They have settled right down now as the dose has been reduced, but I am still feeling very confused as to how my blood levels even got so high. I am a small person (5 ft 3, 68 kg don't know the pounds of that) so maybe 500 mg per day for so long was too much for my body size? Was not tested for a year. Just want to get off this med. At this point just want to go off all meds and take my chances, I'm tired of all side effects after four years and six different AEDs.
Until two days ago I didn't even know they were called AEDs! That's how little research into all of this I have done - just wanted to take the pills and get on with life. But the pills are not letting that happen, and right now I'd rather live with the epilepsy, if that makes any kind of sense.
Thanks
WW

Re: toxic dilantin level

yup 113 is toxic here too.

not fun!

I'm also small.. less than 5 4 and i'm 120lbs.. divide by 2,2 to get kgs.

AEDs are a bitch.. its just a fine line between side effects and effectiveness.

i'm going back to the dr to get my test results for my last level.. my whole body is tingly and pain-like.  they didn't call me so i assume the levels are ok but for me i need actual numbers. to me there is a huge difference between 41 and 79... both in the therapuetic range but still.....and i want to know why my body is all numb and tingly.

ever experienced that?

i find with AEDs and your health you gotta be pushy.. tell them you feel off and they will test your levels..

let me know bout the tingly stuff

Re: toxic dilantin level

Not tingly, just went from exhausted, clumsy, bumping into stuff to BANG! on the floor, face grimacing, body jerking, for three days, even in my sleep. Then as the meds were lowered, face started to calm down, thank god, and eventually it has all stopped, but took a while to stop walking wonky. Also, had some itchy skin lesions (small) that cleared up overnight. Now I am just tired. Worst week of my life.

I agree with you that there is a big difference between 41 and 79 - and from what I have read of Dilantin, that is a fact that is borne out in the research. It is possible to have a toxic reaction in the upper therapeutic range. I also think that each body is different, and everyone can have different reactions depending on what the meds do to your nervous system. So I got dizzy real fast on Lamatcil, for example.

I have been having my friend (neuroscientist) do some research for me, and now I just want OFF this drug. She says if I am gonna be on it, my dr needs to make sure I am tested regularly, because toxicity can happen real quick, depending on my liver function. Scary stuff.

Re: toxic dilantin level

hey WW...

just thought i'd let you know.. my levels dropped to 42.. don't know how or why.. but i'm outta the high range.. and on the low side... 40-80

hope nothing happens.. and I hope you are doing well!

Re: toxic dilantin level

Thanks, and good luck.
I have dropped another 100mg, and am going in today to find out the results of my last levels check. Also had a liver function test to make sure everything is OK there.
Looking forward to getting everything back to normal.
Wonder Woman

Re: toxic dilantin level

I just recently had a critical level of dilantin at 41.2 which is extremely high. This critical Dilantin level made me toxic it made me dizzy and i severly hurt myself. lucky for me their were some very nice and caring people present that called the ems to take me to the hospital and then i got transferred out of town to another hospital by another ambulance service. I had a plastic surgeon stitch me up he put in a total of about 70 - 75 stitches. I am doing better now thanks to the doctors.

Re: toxic dilantin level

Hey there
Had my levels checked last week - they are now at 54, which is good news. Liver function test came back OK.
Still tired, but feeling a LOT better!
Hope things are good with you.
WW

Re: toxic dilantin level

vickie l  I was taken off of Dilantin and put on Keppra 500mg. twice a day.  I can say it helped stop the seizures, but I want to go back on Dilantin, the side effects of Keppra are awful, depression, I mean REALLY BAD. There is no sleep while on this and my blood pressure has continually dropped. I have always had high blood pressure but they told me to stop the blood pressure medication immediatly since my pressure is 92/52.  I seriously want to go back on Dilantin but now I wonder if I should.  Sounds like you all are having Dilantin problems, makes me wonder what to do. 

Re: toxic dilantin level

 Keppra is also known to cause behavioral mood changes. it can make someone get angry easily. I should know i was on Keppra for awhile. My parents and other friends even noticed my mood got worse since i had ben put on Keppra. now that i am off Keppra my mood has improved alot. As far as Dilantin goes if you get toxic call your doctor and tell them you want some blood work done along with a liver panel as Too much Dilantin can cause Liver Problems.

Re: toxic dilantin level

I used to be on the 100 mg tablets with the red stripe. I am now taking the Half Red / Half White capsules. They are made by the same manufacturer. They are not any different except how they look. I was just at my Neurologist today and we went over this subject then.

 

Re: toxic dilantin level

I used to be on the 100 mg tablets with the red stripe. I am now taking the Half Red / Half White capsules. They are made by the same manufacturer. They are not any different except how they look. I was just at my Neurologist today and we went over this subject then.

 

Re: toxic dilantin level

I got my new dialntin from costco, for 6months+...

 david

Re: toxic dilantin level

One of the first meds they put me on was Dilantin. I kept having more and more seizures. The doctors kept upping my dosage, even though I kept telling them I didn't feel right. They were insistant that I get to the 'therapeutic level'. Finally I collapsed at a friends house. By this time I couldn't sit still, I was constantly jerking and rocking, couldn't walk right, looked like I was a drunkard, had stopped driving obviously and I didn't make any sense when I spoke. If you talked to me you'd have repeat things over and over to help me understand and even then it was iffy. When I collapsed they hospital the emts took me to did blood work and I was over twice the 'therapeutic level'. I was admitted to the hospital for a week and half to get detoxed off the meds and was in NICU. I had lost over 35lbs which was a lot for me because I'm not overweight by any means. I was completely out of my mind. I don't even remember most of it.

I never went back on that med though and I fired that doctor. I had been calling and leaving messages for him the whole week before I collapsed, telling him that something was wrong. Letting them know my symptoms and begging for help. They did nothing. I've learned to become more pushy and tell them when I'm coming down from a dosage rather than asking. Then I take their advice on how to do it and which level of mg to try. But I listen to my body more than the doctors. After all, it will let me know when something isn't right.

The other thing I learned, some people can't take the 'therapeutic level'. It is simply too much meds for them. Such as me. I'm sensitive to medication, I need a small dosage and it works better. A higher dosage and I will have more seizures. And I, most importantly, can't function at all! That is not an option. I'm a mother. I've got to keep going. At least as much as my brain will let me. =D

Re: toxic dilantin level

Well...isn't that interesting?
I have been talking to one or two other people here, and doing some research, and I was 99.9% sure that everything was caused by the dilantin.
You just gave me that last bit I needed. That's exactly what happened to me, except my local hospital left me alone to deal with it myself. I am lucky I have a nursing family, and a very good GP who figured it out.

I am so upset right now. They just left me to go through exactly what you went through for days, and treated me like I was mentally defective. My kids had to watch me do that. My eldest daughter is autistic, and it's not fair that she had to see that, but my youngest is finding it the hardest to understand.

If it wasn't for my GP, no-one would have even checked my levels and I would have stayed on 500 mg and toxic for god knows how long.

The worst part - twitching on the floor, unable to get up, with a nurse in the doorway (I am assuming) saying "Oh, this is just what she does. Stop it. Get up," and listening to my husband cry.

I am looking forward to my new neurologist and hopefully someone who will be competent and treat me with some respect, and not leave me for a year without getting my dilantin levels checked.
Thanks for telling me what happened to you - it helped a lot.
Wonder Woman

Re: toxic dilantin level

Oh my word! I can't believe they didn't help you come down off of it! It is a toxic level for a reason, it can KILL you.. My gosh! People can be so ignorant it is just beyond aggrivating!

Listen to your body. U know it better than anyone else. Trust yourself.

Crystal

Re: toxic dilantin level

No, no help, just derision. It was really one of the worst experiences of my life.

Did you get any skin issues? I have some skin pigmentation on my face, and had a couple of small scabby or itchy spots develop, which disappeared as soon as my levels went down. The pigmentation is still there, but is fading, slowly. I have seen pix of Stevens-Johnson syndrome, and I am very happy to say that I don't think it is anything like that, but it was weird.

The whole time I kept going through it, I was thinking - Occam's Razor - the simplest explanation is often the best. I'm epileptic - look at the epilepsy. But they wouldn't. They looked at everything BUT. Then when the dilantin levels were checked (NOT by them) and came out at 113, they still wouldn't accept it because by that time, they knew they had made several HUGE mistakes and didn't want me to sue, I guess. Which I was not gonna do anyway. All I wanted was answers.

My GP just looked at the numbers and said, OK, there's your problem. The neurologist refused to acknowledge it because it was their error.
You are so right - listen to your body.
WW

Re: toxic dilantin level

I don't remember any scabby issues but it was a couple years ago and even though I knew who I was when they sent me home I was still a wee bit off my rocker. I do have a huge area on my back that has changed in pigmentation and I've wondered what it is from. It's been there I guess since about that time, now that you mention it. It looks like veins running all over my back, connected and not, but in the middle of them is my regular color. Only on one side of my back. Very strange. Do watch your teeth. An overdose of dilantin can cause problems, even rotting, of your teeth. My dentist let me know that when I had to get some teeth pulled after that happened. Probably somewhere between four to six months after the overdose.

Re: toxic dilantin level

I have been worried about my teeth - my gums have been sore, in the week leading up to the toxic period, and since then. I am trying to make sure I floss, mouthwash etc. My neuro didn't tell me I had to take extra care of my teeth and my calcium consumption - yet another in the long list of things I have not been told about this medication.

The pigmentation sounds like maybe it is connected, if mine is. My friend has been researching this for me, and she is a neuroscientist. She has been worried about the skin changes more than anything else, although I am not sure why exactly.
Crazy! Whodathunk one medication could do so much damage, and with so little regulation!
Can't wait for May - new neurologist, hopefully new answers and a new AED.
WW

Re: toxic dilantin level

anniemarie, Hi 2 yrs ago I was put back on Dilatin due to returning Epilepsy Grand-mals. The ER Doctor put me back on Dilatin without telling me to only stay on high dose for 1 week.  The Dilatin I was started on a 300 MG Per Pill, Script read 300 Mgs 3 XS a a Day which i was suppose to take 3 Pills in Am 3 Pills afternoon and 3 Pills at Bedtime, So he wanted me to take 900 mGS per day.  Now that would be 63 Pills a Week and the total  of 900 mgs x 7 days a week 6,300 I believe.  Well after 3 weeks passed by I notice my Balance was really  severe at home and my Husband notice when I got out of the car I was Walking totally sideways with my Head tilted,  for a while I did not notice me walking that way  what really got me and made me call my Family Doctor was all of a sudden my Eyes started seeing funny like I was Watching a TV with Bad Vertical Problems like everything i was looking at was Flipping really fast with Lines in it. I went to the ER and the ER Doctor started me on Drinking Charcoal instead of Pumping My Stomahe because it was well in my system and Liqiud Charcoal  was the only thing that would get rid of the dangerous toxin levels .  I was admitted into the Hospital  put in a Regular room and later that Day I was put in ICU because they thought for sure I was going to go into a Coma later that night, so I refused to Sleep and take any  sleep Aids. I was Overdosed very  Badly and they told me i could have lost my life within a Couple more days in my skeep if I did not get to the ER. 

Re: toxic dilantin level

Wow - that's terrifying. Why do these doctors just prescribe this AED and not monitor it when it can have such drastic and dangerous effects?
WW

Re: toxic dilantin level

unfortunately with AEDs it can be a hit or miss with drugs, as everyone is different.  with taking into account weight, how the body metabolizes medications, and so on.  I am 51, and have been on dilantin for about 30 years.  The only time i was toxic was after i had my daughter, and i did not reduce my dose quickly enough in relation to my weight loss.  Theraputic being between 10 and 20.  I was at 26 then.  My God, so glad you are still with us!  I felt like I was on speed with that level!  When i almost croaked about five years ago, a smart neurologist put me on liquid dilantin.  i have not had a seizure in over five years.  The liquid is a quicker delivery into the body.  my level hovers at around 10 or 11.  More at the lower end of theraputic, which i prefer.  We have to be vigilant about our bodies, and with age comes wisdom and some good and not so good experiences.  In my early twenties i drank too much, (had a seizure) in my late twenties i thought i was super women and did not need meds, that experiment lasted 3 days - had a seizure!  So, getting that level checked regularly, without being paranoid makes good common sense.  The lesser of two evils is taking my meds.

Re: toxic dilantin level

I have no idea how you could even function at that high of level.  I was getting very very tired and sleepy over the last few days, also stumbling alot.  I was pretty sure it was my dilantin level and it was, 22.  I cut back the next 3 days and I was down to 17 but my seizures started all over again.  30 yrs and I still can't win.

I take tegretol, lyrica, lamictal, dilantin, and ativan.  And when I don't feel right (what I call riight for me but would be sick for normal people) I get my levels checked. I have them checked every 3 months anyway.

I hope you start to feel better soon.  Good luck.

 

Re: toxic dilantin level

I am not so well informed, but I thought my doctor said what is good for me is 600 to 650 range.    Like I said I don't know "exactly" what is meant by that.   I take Dialantin 300mg per day.    Has kept my mind clear and my body totally functional.  I play tennis, ping pong,swim, dive,ride, bike, work in house construction, you name it Body weight 150 lb

Basically I was not "visibly sick" for 35 years. 

   Never ever got the seasonal flu, never got flu shots.   I just get the exotic flues such as Asian flu(which lasted 3 days in bed) - then H1N1(which lasted 9 days and was "severe"  I drank half a glass of water each day for that time period.   (No food) Day 10 - over it and had breaky, lunch and supper.  Even went to the supermarket.

Next day, I had the flu again(not as severe) but I was out of energy so I did not cook or eat for 14 more days.  Now I have never been told this or experienced 2 diseases one after another in which I was again on a "diet".

So, I still kept popping in the medication each day as I have for the last 30 odd years.       I was hardly using the bathroom(no food in=no food out) 

I was just about at the end of the second flu(I think) when I awoke to see that I had seized(blood on the pillow "and no horses head".    What the hey?   Went into the bathroom and took morning meds as per usual.  I felt the second seizure coming on, which is unusual as I have "grand mal" instantly unconscious type episodes.   

Fact is I could get to a phone and as it looked complicated to work over the land line variety by Bell; I could not figure out how to get "dial tone" to call 911.     Somehow I lucked out and it called my brother and I asked him to place the call for me because I could not.   

I hear them arrive and cannot get to the front door to unlock it.  My brother thought of the same thing and drove15 minutes to let in the responders.

I wake up in emergency after having 4 seizures.  The hospital emerg was pumping in more dialantin into me.

By the time my doctor got there, I had (for what I remember him saying 3600 in me instead of 600 .  So I was in detox in Jan and in February.

Now, I do not know anything about what the numbers mean.

Just telling you how my 2010 was brought in(as this is a Dec30 incident.)      Going toxic really screwed my balance and ability to be normal.  Defiitely need more info on my medic alert tag.

Re: toxic dilantin level

Hi, I am from Australia and our therapeutic levels for Phenytoin, (Dilantin) are between 40 - 80.  Monthly blood tests are done and my levels hover around 50, 52.

Have recently been in hospital and they doubled my dose of Dilantin from 200mg to 400mg.  On discharge blood was not taken to check my levels.  Why the hospital doubled my dose, I do not know! When questioning the amount it was relayed to me that that is what the Dr has prescribed!  No follow up blood test was taken prior to discharge.

A week later I was having trouble seeing, walking, coordination, had severe shakes in my hands and legs and was vomitting every couple of hours or so.  I couldn't even dive. My GP arranged a blood test which the reading came back as 169!!  Dilatin was stopped immediately and another blood test taken 4 days later.  This reading was 146!!!  Still too high for our "therapeutic levels"  Was told by my specialist that it may take 3 - 4 days to reduce my levels.  In the mean time do not take any Dilantin or Lamictal. 

The next blood test has been organised for this Monday, (3 days away).  Will see if my levels have dropped.  My specialist has told me that I am TOXIC.

 

Re: toxic dilantin level

They may have taken a level at a time of day differently than when you usually have your blood drawn.  Or....there could have been an error in the lab.  That's not uncommon and has happen to me before.  Or it could have been an error in documentation.

When you questioned the staff about the doubling of the dose and you didn't get a satisfactory answer, you should have asked the staff to contact your doctor explaining why.  Don't settle for anything less.

Levels wouldn't not have been taken upon discharge because it can take about ten days, at least, for the Dilantin level to respond to the increase.

Karen