Toxic Dilantin levels

[rich956]

Was wondering if anyone has expierianced
their Dilantin levels going going toxic. my story begins with me having been put on 3 x 100 mg a day beginning after my first tc in 93, from there my blood levels would decrease and increase over time thus increasing the dosage
by one at a time.fast forward to 2008 and was taking 5 to 600 mg per day .not realizeing that I was toxic , life went on and for a good year I thought certain health concerns were just old age or something .I had thought I was getting arthritis and was being treated for it... I blew off the gingivitis and bad vision that was related to the use of Dilantin as just the norm for this med.. in 2009 I had another blood level done one morning went along with my daily routine... Then about 2 am the hospital called me and asked if I needed an ambulance. I said why ,they replied that I was TOXIC, and that my levels were above 60 and I needed to do something about it. I said no I felt ok. they told me to not take my next dose to get to the lab first thing in the morning....didn't take my morning dose and my son drove me to get my lab done,then dropped me off at work before he went to school. about an hour later I wake up in the ICU compleatly confused...Come to find out I had a grand mal at work as was taken to the ER, l was later told because my levels dropped so rapidly my heart stopped while in the ER . they shot some drug
into my heart and began cpr...they kept me in ICU for four days and took me off the Dilantin and started me on keppra. my arthritis went away but the soles of my feet became numb lost my sense of smell and taste ,got a rash on my arms, phsoriasis on a third of my body.and severe depression...and my mind has never been the same.

 

[Dolores]

Rich956, in 1986 I reached toxic levels of Dilantin. I was feeling poorly (put it down to flu), getting dizzy (put it down to stress). I was driving to a job interview when the car in front of me suddenly became 2 cars - wow that never happened before, this flu must be really bad I thought. So I turn around, go home, go to my GP about my "flu". He does bloodwork and tells me I'm at a level 43. I don't think I took any Dilantin that day and then slowly decreased my dosage (my neurologist had increased it but never did any follow up which then led to the overdosing). I admit it was rather frightening when I read the Dilantin info sheet and it said there was no antidote for toxic levels and that it could result in death.

I have to admit I must be a slow learner because it wasn't until 5 years later that I started tracking my Dilantin levels and the dosage I am on at the time. One of the odd things about Dilantin is that it can increase in a non linear rate. It can suddenly increase in your system so that you are overdosing. Or it can drop off so you don't have enough.

I'm still on Dilantin because it controls my seizures. But I am much more attuned to how I am feeling - out of balance comes first with me when I start to overdose. So I get a blood level check and then discuss dosages with my doctor (who is really great as he taught me more about the side effects of Epilepsy and Dilantin than most neurologists I've seen).

The most I've ever taken is 400mg/day. The least has been 300mg/day. I like to keep my levels at about 16 since my seizures only have come when I have too little in my system.

Sorry to hear about all that happened to you. Were your seizures controlled on the Dilantin until the TC when you were toxic? I don't have many side effects from Dilantin (nothing unmanageable) and my doctor keeps a check on my liver etc.

Hope you can find your mind again {{{Hugs}}}

 

[rich956]

I was still getting at least one tc a month. stress has been a big trigger for my tc's
and I can feel it starting to hurt around my eyes and then my head and then boom !
TY and Hugs back at ya.

 

[Dignan]

...took me off the Dilantin and started me on keppra. my arthritis went away but the soles of my feet became numb lost my sense of smell and taste ,got a rash on my arms, phsoriasis on a third of my body.and severe depression...and my mind has never been the same.

Rich, I'm curious if you (or your doctor) felt that your more recent symptoms (numb feet, sense of smell and taste, rash, depression) were the result of the dilantin (which I understand you are no longer taking) or if they are the result of your new drug, keppra?

And, if these new effect are caused by the dilantin, was there any reason given as to why these effects only presented themselves after ending dilantin use and not while you actually took the drug?

I ask because I had some effects show up after I ended dilantin, but I was told that if dilantin was to blame that I would have felt the negative effects while taking it, not after ending it. (although I was NOT toxic) As a result, they want to blame my new drugs for the issues and have said I can go back to dilantin if I want, since I felt better all around when I took it.

 

[rich956]

I think it was after I had started the keppra .
four years later iam off of the keppra. for some this med is great and for some its a nightmare.
for me it was the drug from hell...sorry but it sent me into a depression pit I thought I would never get out of.....

 

[Dignan]

Rich,

Thanks for the info. I'm on the fence about Keppra too. I haven't had any big seizures, but I feel dumb as a post and my memory isn't good. Also, I've had other issues that seem like my hormones may be messed up, but docs can't seem to find anything on the tests they do, so I don't know.

I think about going back to Dilantin honestly, but who knows what caused what. What do you think was better for you drug wise? And, are you doing better now?

 

[kirsten]

Rich, I am absolutely stunned at the entire story. 60? And you weren't even aware that anything was wrong? That's scary. And then they just let your levels drop?

What sort of symptoms did you have? And can you describe the vision problems you had? I'm concerned because my levels are coming up very low, but I don't feel right so I'm wondering if the levels are up but just not showing up in my bloods. I don't even know if that's possible. I'm on 600 mg a day. My one eye has problems for an hour or two every day or so, where things look whiter and more difficult to make out. I've also had dry mouth from meds before, but now it's really more severe than I've ever experienced and it doesn't go away in the trough. Very uncomfortable. I'm madly drowsy and tired, and I have psoriasis in places--not a lot, but it's unusual for me. And last night I was fiercely nauseous and couldn't sit up. I was shaking and I just had to go to sleep.

 

[rich956]

Rich,

Thanks for the info. I'm on the fence about Keppra too. I haven't had any big seizures, but I feel dumb as a post and my memory isn't good. Also, I've had other issues that seem like my hormones may be messed up, but docs can't seem to find anything on the tests they do, so I don't know.

I think about going back to Dilantin honestly, but who knows what caused what. What do you think was better for you drug wise? And, are you doing better now?

Well first off was when I was on keppra I couldn't tolerate any anti depressants so the doc suggested I try a thyroid med called liothyronine it has help some.
Also iam now completely weaned off of the keppra and on lamotrigine 400 mg a day. So far its been more tolerable than the others. Iam not as down as I was. I hope this helps.

 

[rich956]

Rich, I am absolutely stunned at the entire story. 60? And you weren't even aware that anything was wrong? That's scary. And then they just let your levels drop?

What sort of symptoms did you have? And can you describe the vision problems you had? I'm concerned because my levels are coming up very low, but I don't feel right so I'm wondering if the levels are up but just not showing up in my bloods. I don't even know if that's possible. I'm on 600 mg a day. My one eye has problems for an hour or two every day or so, where things look whiter and more difficult to make out. I've also had dry mouth from meds before, but now it's really more severe than I've ever experienced and it doesn't go away in the trough. Very uncomfortable. I'm madly drowsy and tired, and I have psoriasis in places--not a lot, but it's unusual for me. And last night I was fiercely nauseous and couldn't sit up. I was shaking and I just had to go to sleep.

Hi, Well I had close to and or most of the same feelings your having . I would not be able to walk up stairs without my knees hurting making it hard to get up from kneeling without asking for help. the vision was like at night I couldn't drive because all the lights started to get blurry. it affected being able to read without having aid =like store bought glasses, I had great vision. reseeding gums and dry mouth with teeth becoming loose. if not moving around would fall asleep like one time at a stop light I fell asleep and my son yelled at me to wake up,that really scared me.and to fall asleep in front of your tv or computer.so was feeling really tired a lot. I am glad iam off the Dilantin. I hope this helps in some way .

 

[kirsten]

It does, Rich, thanks. I tend to think things like toxicity only happen on Web MD and not in the real world. I just started having problems with one of my knees yesterday, too. I'll have a look around and see about whether blood serum levels are always correct.

 

[Ruth]

Rich,

Thanks for the info. I'm on the fence about Keppra too.

I think about going back to Dilantin honestly, but who knows what caused what. What do you think was better for you drug wise? And, are you doing better now?

I take Keppra. My neurologist told me right off when he put me on it that I have to take Vitamin B Complex every day. I have and I have had no side effects. It is controlling my seizures.

I am allergic to Dilantin. I first took it in 1949 when I was diagnosed with epilepsy. I wound up so allergic to it that I had Steven's-Johnson Syndrome. That is a very rare side effect and I almost died.

My sister took Dilantin and it worked for her. It stopped her seizures for quite a while.

:hugs:

 

[Garbo]

Oh my gosh! I'm so sorry to read about this! I had something similar happen in the exact same year, although not as bad-- my levels peaked at 45 due to my former neurologist over drugging me (I was up to 1000 mg of Dilantin). Anyway, I was hospitalized for a week for cardiac arrest and toxicity.

I've read that Dilantin toxicity is really common.

 

[rich956]

I take Keppra. My neurologist told me right off when he put me on it that I have to take Vitamin B Complex every day. I have and I have had no side effects. It is controlling my seizures.

I am allergic to Dilantin. I first took it in 1949 when I was diagnosed with epilepsy. I wound up so allergic to it that I had Steven's-Johnson Syndrome. That is a very rare side effect and I almost died.

My sister took Dilantin and it worked for her. It stopped her seizures for quite a while.

:hugs:

iam glad that the keppra is working for you sadly it just added to the depression the I have been dealing with for years after my wife passed away.
I do believe that that was a factor in how it was affecting me.

 

[rich956]

Oh my gosh! I'm so sorry to read about this! I had something similar happen in the exact same year, although not as bad-- my levels peaked at 45 due to my former neurologist over drugging me (I was up to 1000 mg of Dilantin). Anyway, I was hospitalized for a week for cardiac arrest and toxicity.

I've read that Dilantin toxicity is really common.

Wow, iam sorry you went thru this, its a scary feeling to go thru . 1000 mgs ! omg !! that's way over the therapeutic levels. I hope your doing better.

 

[Belinda5000]

The most Dilantin I ever took at one time was 300MG.

I've gone toxic on Dilantin way back when I was just on 300MG a day.