Dilantin toxicity

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Gumfoot
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Date Joined Feb 2009
Total Posts : 3
   Posted 2/23/2009 10:13 PM (GMT -6)   
Flowmaster00,

If I had tried Lamictal or any other med (without Dilantin) prior to surgery, I would be able to say whether my surgery was necessary in order for me to be able to gain control over my seizures. I guess I will never know because the meds were never tested that way prior to surgery.
Don't let my situation completely turn you off of surgery. If your situation can be helped with surgery, I would say go for it. My bosses didn't understand my condition nor my medication side effects nor my recovery from brain surgery so all they looked for was anything odd or different and anything that might have meant more work for them (extra monitoring or wasted trips to my office, etc.) because when they don't properly understand, the oddities are what they remember and they tell future employers who ask. That is where I got screwed. If my bosses think hard enough, they will remember all the work I did, but somehow they can easily remember the oddities and the inconveniences associated with my condition.
Please keep in mind that surgery might be perfect for your situation.

Post Edited (Gumfoot) : 2/23/2009 9:31:46 PM (GMT-7)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/24/2009 1:14 AM (GMT -6)   
Jtm,
Please read my earlier posts in this thread. And remember that each one of us is different. You won't know what controls your seizures until you've tried medications. Don't fear dilantin just for fear's sake. Others here who have mentioned is have also said it did NOT control their seizures. It has controlled mine for 40 years. If it doesn't control your seizures, or gives you too many side effects, then keep working with your doctor. Do make sure you have blood levels checked of yoru dilantin (I have mine done 1 or 2 times /year, but can almost tell when it's "off" but that takes awhile to learn your body). There are many options,.

You may benefit from talking to a counselor to help you with your anxiety (and anxiety over seizures is normal). Your husband could also be included - and probably should go to at least one doctor's visit with you to ease his fears. If you're still having small seizures, taking some reasonable precautions for awhile regarding the children might be helpful. Each case is individual. It's late and I'm tired, but if you want to ask me more you can post to me over on the Chronic Pain forum.

Take care,

PaLady

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 2/24/2009 9:38 AM (GMT -6)   

Jmt,

 I was taking Valium when on Dilantin as well.


Flowmaster00
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Date Joined Jan 2009
Total Posts : 17
   Posted 2/24/2009 9:49 AM (GMT -6)   

Gumfoot,

 Before/when I did the brain work up I wasn't seizure free and was taking Dilantin. Now that I'm taking Lamictal I'm seizure free so there is really no reason for me to have brain surgery. I really don't have any side effects with Lamictal that I know of. So for now I'll stick with what works. but thank you


jtm09
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 2/24/2009 10:22 AM (GMT -6)   
I will stay on the Dilantin. Im not having any siezures. And I pray it stays that way. I get my blood level checked every 3 to 4 weeks for now. Im very in touch with my doc. Thank you for all the advice

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 668
   Posted 2/24/2009 12:59 PM (GMT -6)   
Re: Long Term Use of Dilantin ~ I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile disfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired.
I saw my neurologist recently for my 6 month check up and he noticed my operation scar on the palm of my hand, I told him that it was from an operation I had for "trigger finger". Then he said it was from long term use of Dilantin ~ called "Dupyutren's Contracture".
The attached documentation states that one of the causes is "Epilepsy" as well as acoholism and diabetes.

I had no idea that this condition was linked to epilepsy.

I have this condition:

http://health.yahoo.com/ency/healthwise/....2iImL.RQz_ogrMF
 
 you do start to lose some feeeling in your limbs and gradual irrepairable nerve damage due to long term use.

In my case, since I also have Ulcerative Colitis controlled with meds, Dilantin is the only proven drug that will work for me without clashing with my other meds for my UC. So as you can see, I'm stuck between a rock and hard place.

My neurologist said that if I were to  attempt to change meds I would run the risk of lower brain stem damage, not to mention other problems (like driving (other story)) 

Randy


Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.


Diedre
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/30/2009 12:14 PM (GMT -6)   
i have been on dilantin a few times with out it working, but this time i am on 600mg a day.. but i feel soo tired and i think its mking me crazy, my thoughts are all messed up and depressed.

Flowmaster00
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 4/1/2009 12:59 PM (GMT -6)   

 

 Diedre,

  Dinlantin had that effect on me as well and I was taking Dilantin for 26 years. I'm now taking Trileptal and have so much energy now. I feel That I lost 26 years of my life taking Dilantin. However many people have different reactions to Dilantin and funtion very well. I have some long term side effects from Dilantin that will never go away.

 


bluecollar14
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/15/2010 8:32 AM (GMT -6)   
I've been on Dilantin for 27 years. I take 400mg daily. I just recently went through my first episode of Dilantin Toxicity and it was not nice. I had a level of just over 46 and was on 20 mg of celexa at the same time. My dizziness or vertigo which I thought it was just got worse and worse. I thought all of this had to do with my celexa, while it did play a part, boy was I wrong. The depression, lethargy, enability to eat or get outta bed, eratic thoughts, suicidal thoughts, dizziness, I was a frickin mess. The Drs. decided to stop the Dilantin til the levels came down which is never a good idea for someone like me who cant miss it 2 days or I go into Grand Maus. They gave me 5mg valium to stop the petite maus while waiting for 2 days before starting me at 100mg for 2 days then 200mg for 3 days now 300mg and my Celexa is now at 30mg. I'm feelingl tired still but the head is on tight and the will to get up and eat and do something is back. All this time the Drs. wanted a Dilantin level check over the years and I never really thought much about it. I figured I aint havin a seizure, it's doin what it's suppossed to. Glad I know now. I hope this might help somebody.  

bluecollar14
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/15/2010 8:43 AM (GMT -6)   
Diedre, Go to the hospital if ya have to but get your Dilantin level checked immediatley. A new med may be the answer but first things first.

Nitemare
Regular Member


Date Joined Aug 2010
Total Posts : 26
   Posted 9/1/2010 9:17 PM (GMT -6)   
RanMan said...
shadow1100,

I've been on dilantin for 28 years. One of the things that I've learned over the years is that any over the counter meds for colds or flu containing ANTIHISTIMINE should not be taken as it can cause dilantin TOXISITY.

Most Doctors don't tell you that unless you ask about it. The FDA should ensure that this information is printed on the liturature that comes with each perscription.

Randy


Good info, just started taking Dilantin as well as using an antihistamine and never knew, Thanks for posting this

Mayam
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/15/2012 12:04 AM (GMT -6)   
Hello Everyone,
 
I apologize for resurrecting this old thread but I've been desperately searching through the net looking for info on Epilepsy and Dilantin after some recent new health issues.  It's late and I admit I haven't looked through all the threads here but this one seemed to be glaringly relevant.  In particular it's pertinance to Dilantin and possible side effects.
 
I'll try and keep it somewhat brief.  about 3 years ago as I was getting ready to leave work apparently I had a grand mal siezure.  Never had one before and all I recall was waking up covered in blood with all my coworkers surrounding me with that look of "***?!?!" plastered all over their faces ;).  I immediately went into panic mode not knowing if I'd been shot or what in God's name had landed me in the floor bleeding all over the place (apparently caught the corner of a shelf with my head on the way down and opened it up pretty good).  The EMTs arrived and I still had no clue what was going on.  Apparently it was a siezure but the ER docs just kinda blew it off as a fluke being the only one I'd ever had and they couldn't be sure I didn't just pass out from dehydration and exhaustion and the bump on the head spawned the siezure (I'm a chef and it was September, heat stroke and the like aren't uncommon for us).  But then I started having siezures about 1 - 4 times or so a week yet the ER docs didn't want to commit to a diagnosis and set me up with a neurologist.  Not having insurance I deferred to my good 'ol family doc though.
 
He tried one medicine (which the name of I don't recall) that didn't really agree with me but I just considered the side effects a trade off - mainly just irritability, drowsiness, kind of a tunnel-vision effect at times.  I did have a few siezures infrequently while taking it but I didn't report them foolishly.  Then about a year ago I a fall and broke parts of my back.  At first I was taking some super powerful pain killers but my family doc weened me down over the course of a several months to some "non-narcotic" ones called Tramadol and Flexaril.  Then my siezures began to become quite regular again, even worse than before.  Turns out Tramadol increased my liklihood of having them and upon further discussion we discovered I was having absent siezures all along as well (I'd forgot whole events like going to the store, appointments, seeing movies - which I saw another poster comment on, and the like).  So then he switched my pain medicine back to Vicodin again (which I finally demanded to be taken off of because of it's potential for addiction and the large amounts of Tylenol - through PT I've got the back issues pretty well in hand though most days) and Dilantin.  I thought I was golden now, had already lost my license pending a year free of siezures (some of you are going to get mad at me but I was with-holding the reports of continued siezures on the first med because of that despite having a couple while driving, yes I'm ashamed of that), but now I was truly siezure free and things were looking up.
 
Well then last week I ended up in the hospital with a severe pain in my stomach round about liver level.  I was never a big *BIG* drinker, but 3-4 glasses of wine were nightly after work I admit, after the first siezure I haven't since touched alcohol and became very focused on my diet and health again, although Tylenol had always been my go to pain killer pretty much my whole life (and I used it several times a week easily) then pile on the Tylenol containing Vicodin and it got me nervous - so that was my first thought.  Also at the hospital they discovered I was missing A LOT of blood, it took 4 transfusions to get me back to levels they would let me go home on and that is still a COMPLETE mystery (they hinted at ulcers but never got a clear answer).  I do have a gastro - ummm... whatever doctor now though who is very willing to work out a payment plan whom I go to see next week to find out the results of a lot of different blood tests.  I've since read about potential liver complications with Dilantin though which deepened my anxiety.  In the hospital they had put me on Adivan for my siezures while I was in-patient but the stuff knocked me out quick every time so they put me back on Dilantin pending the test results.
 
Oh I suppose I should also mention here that I was never once tested for the levels of Dilantin in my blood and I had noticed that my arms and legs would jerk involuntarily once in a while (especially when I try to sleep which is REALLY aggrivating ;P) which I am just discovering to be a possible side effect of Dilantin.  Needless to say the hospital doctors found the lack of testing to be a serious oversight.  Additionally, it might be pertinant to include that I have always been rather heavily effected by the side effects of most prescription drugs.  In the past several doctors have tried to give me several different "flavors" of anti-depressants (I realize now that was maybe the "catch-all" malady of the 90's so a few different doctors tried to throw em at me despite my protests) but I couldn't get over the side effects just in the first few days to ever continue the treatments, same with all the different pain killers for my back - they were pretty much all incapacitating to the point it was too difficult to work.  Heck most OTC Cold & Flu stuff makes me rather loopy ;P.
 
Sorry I didn't quite carry through on the "keeping it short" part.  To get to the point though;  In speaking with the Hospital's financial lady she suggested that I may have to pursue disability to be covered by Medicare to get the kind of medical treatment I may need.  For one, the potential of needing surgery for my stomach (it has also been recommended for my back but I'm really hesitant about back surgery honestly), but additionally this will allow me to see a neurologist and really pursue an appropriate treatment and maybe diagnosis for my siezures.  I had always assumed epilepsy was something one was born with or resulted from some serious trauma but I now know that to be false (it could have been that I blacked at work but I'm really not thinking so anymore).  Basically I'm looking for advice as it pertains to whether getting disability is a good direction for me to take or not and the treatment experiences of others with siezure disorders as honestly, I still consider that to be my most concerning illness and I kinda think that the stomach problems might have some relation to the Dilantin though I'm obviously just taking shots in the dark here.
 
Again, sorry so long and sorry to post this in such an old topic.  Tomorrow I will attempt to edit this post down to a readable length (or at least sperate it into chapters, lol!) as well as possibly find a more recent appropriate post to move it to or start my own thread.  If you did read all this, I'd like to apologize again for the hours of your life you just wasted on my blathering ;P and also thank you.  I'm looking forward to participating in this community so hopefully I can at least be a better, more educated advocate for myself as I finally try to get a handle on my present condition(s).  I've learned at least one thing; I've been with this doc since I moved here almost 10 years ago now, he's always been good to me and he's about like family to me but maybe he isn't supremely qualified for EVERY illness that I may pop up with ;P.  He had actually suggested a neurologist when I first came to him years ago and also suggested declaring disability as a possible way of affording it but I had "establishing myself in my career" on the brain.
 
P.S  Thank You all in advance for helping me to navigate my own little personal episode of "House" here tongue .
 
P.P.S ...actually on that note, if anyone DOES have Greg House's phone number I would REALLY appreciate that (big fan of the show too, so bummed they ended it) tongue !

ohio1961
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/14/2013 2:05 PM (GMT -6)   
Hi I have been on Dilantin for 35 years, and I was not feeling myself, I had double vision, I even lost my balance to the point I could not walk straight, I went to the hospital, and right away they told me I had vertigo, gave me anitbiotics. And I still was not feeling well, I went to my doctor, and she ordered me to get a Dilantin blood level,. It was 41... she told me to stop taking my Dilantin for 3 days, I thought she was nuts.... and I was scared to do that, but I got thru the first day ok, the second day in the afternoon, I had a seizure and fell, im all black and blue... I went back on my Dilantin, then I was sitting down, and I felt so sick to my stomach, so I got a banana, I could not even finish it, when I vomited like I never vomited before, I was so scared. I think my doc is a quack and Im not going back there.... Im just going to take this in my own hands and continue taking 600 mg a day... I also have been taking a lot of allergy medication too.. So im thinking this had something to do with my elevated blood level..... Does any one have an opinion on maybe what went wrong? ( I had a great neurologist, and He retired, he left me a referral, but I waited to the last minute to make an appointment, when I called he could not take me cuz did not have a family doctor, so I found a family doctor and I told them why I am there, just so I had a family doctor, so I can make an appt. with new nuroligist.  well family doctor told me that she can treat me for epilepsy as long as there were no complications.....  this doc. knows nothing about epilepsy)  I need to find a new neoroligist.  A family doc is not cutting it... 

Post Edited (ohio1961) : 7/14/2013 2:17:44 PM (GMT-6)


SunnySkyJan
Regular Member


Date Joined Aug 2013
Total Posts : 38
   Posted 8/22/2013 8:39 AM (GMT -6)   
Oh My Goodness ohio! I never dreamed of so many people having so many seizures when on Dilantin. The last time I had a seizure they put me on an additional drug, phenobarbital...and I take it once a night. I was told by Mayo Clinic that the best is to stay on what you're used to and not switch. After brain surgery one time, they had switched my meds about 4 times here at home, and nothing worked. I went back on my old time ancient Dilantin and Phenobarbital. I've been on it since I was 31 and now I'm 65 and amazed I'm still cookin! ;-) I have to have blood tests every 6 months and see my Neurologist same day also.

SunnySkyJan
Regular Member


Date Joined Aug 2013
Total Posts : 38
   Posted 8/22/2013 8:41 AM (GMT -6)   
PS: 4 Dilantin at 100mg and 2 Phenobarbital at 30mg ea

1uglypug
New Member


Date Joined Apr 2013
Total Posts : 10
   Posted Today 7:22 AM (GMT -6)   
I got exposed to permethrin, the stuff in flea powder and insecticides, and had a seizure, and they gave me so much dilantin in the hospital the collapsed a vein.... I got rid of all carpet in my home and I and my dog stopped having seizures,,,, keep an eye on poisons around your home and in restaurants,,, they use a lot to control ants that eat the spilled sugar for coffee,,, may be sprayed around the tables where you sit,,,

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 210
   Posted 12/1/2013 9:58 AM (GMT -6)   
I take extended capsules of dilantin. I have for 8 years. It works well for me. i plan on staying on it.
Greg

JHM
New Member


Date Joined Aug 2014
Total Posts : 2
   Posted 8/16/2014 3:12 PM (GMT -6)   
If PALady is still on this board... I would love to chat with you. I am on Dilantin too and have been told to get off of it, but I have had such a great life on Dilantin (so far!) My brain does show some problems on the latest MRI, but I am still upset at possibly making the change. Anyone have good stories about Lamictal? That's what they want to put me on.... Oh and PA Lady, I am a teacher too... would love to chat.

JHM
New Member


Date Joined Aug 2014
Total Posts : 2
   Posted 8/16/2014 3:17 PM (GMT -6)   
If PALady is still on this board... I would love to chat with you. I am on Dilantin too and have been told to get off of it, but I have had such a great life on Dilantin (so far!) My brain does show some problems on the latest MRI, but I am still upset at possibly making the change. Anyone have good stories about Lamictal? That's what they want to put me on.... Oh and PA Lady, I am a teacher too... would love to chat.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 8/16/2014 6:11 PM (GMT -6)   
Yes, Dilantin can cause problems if used long term, so can aspirin, so can uncontrolled seizures. There are problems with every medication. Just because other medications exist doesn't mean that they would work for everyone, some people take a combination of Anti-Epileptic Drugs to control their seizures.

My toes are numb, I saw a podiatrist, he sent me for an EMG. I told the podiatrist that I take Dilantin, I told the EMG technician that I take Dilantin. They both said Dilantin wouldn't cause my problem. The EMG showed a deficit in nerve conduction, naming a specific aspect. When I looked it up on the internet, the precise deficiency the technician reported was listed as a side effect of Dilantin. So much for knowledgeable podiatrists and EMG technicians.

epilepsy.med.nyu.edu/treatment/medications/phenytoin#sthash.YMwipH4p.dpbs

Here's the story of an individual that thought Dilantin was a miracle cure for a variety of ailments. Remember, everything in moderation. Certainly the low dose he was talking about for various treatments is not the same as high doses we may need, but then, as far as the likelihood of having long term issues, higher doses may present greater chances of side effects. I take 300 mg of Phenytek twice a day, so I'm on a substantial amount myself.

www.remarkablemedicine.com/

stillgoingstrong7
New Member


Date Joined Dec 2014
Total Posts : 1
   Posted 12/20/2014 4:59 AM (GMT -6)   
shadow1100 said...
I have been taking dilantin for 35 years, never had a problem. The last few days I felt a little odd to the point where I called my regular doctor. He told me my dilantin level was 46.4 and the normal range was 10 - 20. This freaked me out a bit. When I spoke to my Neurologist he asked if I had taken any antibiotics recently, which I have not. I explained that I have not done anything out of the ordinary. He told me to reduce my dilantin intake and have the level checked again in 2 weeks. I am extremely worried that there may be a serious underlying cause for this, such as liver disease. I am questioning if reducing my dilantin intake from 600mgs per day to 500 is better than stopping altogether for a few days. Any thoughts or experiences with this would be appreciated.
nono it is best that u miss 2-3 days so that your level can drop down some.
Hi how u doing? I was taking 300 mg per day since I was 13 and I'm now 34. I believed that your dosage should be determined by how often you have your sezuires.
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