Dilantin Blues

[meesher]

Name: Michele. Given Dilantin 100mg 4x day. Taken it for one year. In all that time, neurologist never ONCE mentioned getting a blood draw to check levels; never once told me to check my blood sugar, which Dilantin messes with; never once mentioned gum rot or tooth rot at the gum level: now I have to have 5 teeth pulled? PULLED? Never mentioned bone density, so those two years of giving myself daily injections of Forteo are just plain history. No bone growth. No mention of: memory loss; hand trembling; loss of concentration---I cannot even compose a text message without re-reading what I just entered. These men and women stopped our seizures (in my case) but in doing so, Dilantin lost our lives. My skin has become so dry I am considering whether I am having second menopause. I take Premarin 1.25 and have taken it since a hysto, thinking my skin would stay as beautiful as all get out although I braved getting beast cancer, heart disease and the whole magilla that Premarin warns about. The doc who gave me Premarin at hysto time at least had the decency to tell of those "maybe" side effects. Now my skin looks like my grandmother's did, and my knees ache and my ankles ache, and I take calcium, Vitamin D, BUT NOT FOLATE. No cream (and I've invested in a boatload of them--can help my hands and forearms--not to mention my face!)

[meesher]

Anyone found a medication that substiutes for the evil dilantin?

[rich956]

i went from 6 dilantin a day to 4 keppra daily.the dilantin nearly cost me my life. i better with the Keppra....

[meesher]

Keppra made me an absolute raving bee atch. When my hub told my neurologist about my most recent behavior changes, I had the only belly laugh I've had in 10 years. neurologist stopped that Keppra nonsense. Now I am stuck with Dilantin and I want OUT! Or OFF, WYF?

[Nakamova]

Hi meesher,

I started on Dilantin, but was switched off after about a year, first to nothing (tapering down in a failed try to go med-free), then to Zonegran (did not work out) and finally to Lamictal. Lamictal isn't perfect, but hasn't messed with my gums the way Dilantin did. You might want to ask your doc about that possibility.

[PhylisFeinerJohnson]

Dear Meesher,

I went from Dilantin which gave me galloping gum rot and eventually ended up with Lamictal (which at its lowest dose acts as an anti-depressant, next level is for anxiety/depression and epilepsy.)

I take that with Klonopin which is an anti-anxiety, anti-epilepsy med.

[meesher]

Dear PhylisFJ, I was given Klonipin first, and I just vomited that one right up. I will not take ANY of the various Kloni-somethings, of which it appears there are quite a few. I'm not not depressed, although I have been known to rail against the injustices of Dilantin. I may well have Dilantin RAGE, but not Dilantin Blues.When given Keppra, I turned into an unholy monster and the neurologist withdrew it. I will be spending my money on $8,000.00 worth of dentistry, which I have to sit through. The blackened teeth are being removed and I will have to use an appliance in my mouth, which is something that can actually be "removed" for "cleaning. The Dilantin just cost me my youthful, healthy, young teeth. (yes, I am over 50). Since I hit my head (in 1989) and then developed epilepsy, 2010-ish, I have been given Xanax, for anxiety. We moved to the mountains, to keep things more quiet. Please tell me more about Lamictal, which it appears you tolerate well. Michele

[PhylisFeinerJohnson]

Lamictal has been very good for me. It took me from a near death situation (3 years ago) and restored my sanity. In fact, now I'm on the lowest dose.

Can you talk to your neurologist about it?

http://epilepsy.emedtv.com/lamictal/...-lamictal.html

I'm worroied about you.

[jyearta]

Hi Meesher,

I wish you the best in finding a diff. medic. that works for you.

I am on Dilantin and klonpine , these are the only 2 combined medic. that have kept my seizure under control.

I have tried MANY other medic. they either resulted in more seizures or I could tolerate the side effects.

[meesher]

Dear Phylis, thank you. I understand that you do not wish a near death experience for me. But Dilantin plus Vimpat has equalled a dear death for me, and I saw no angels or any other things. Just blackness.In the now 8ish days I have NOT taken the "right" dose of Dilantin, I have had no withdrawal sysptoms. Indeed, I am breaking the Valium into pieces and I am STILL more alert than I have been since I started taking Dilantin in the hospital. I will investigate Lamictal. My husband told me, last night, that at my last appt with the neurologist, telling him I WAS going to wean myself OFF Dilantin and Vimpat, he (the neurologist) mentioned to him (husband) "You are a very brave man, my friend". Well, yes, my hub is. I think most of the neuros think we are psychotic and that our brain waves are caused by some psychological deficit. I may seize again, but in between, I will have had a greater quality of life than in all the years since my first head injury in 1989. I think the slightest bump can trigger seizures that appear to be status epilepticus. I also think that football players have enough power and money to keep their symptoms quiet. Can you imagine an umpire or coach stopping a game, on NBC, just because one of his players appeared to have a 30 second seizure? No. No. No. I will stick with using Valium pieces and taking more naps. I have never been able to nap, in my whole life, prior to Valium. And I have generally always taken a sleep med for sleep. Yes, just a tad on the alert side.

[meesher]

And just like football players, once we have ONE head injury, we tend to have more, since we fall down and the human head is a VERY heavy part attached to a scrawny neck.

[PhylisFeinerJohnson]

Interestingly, the neuros are just starting to seriously look into "concussion syndrome". I've had so many, I can't count. And of course, the effect is cumulative.

I still haven't gotten over the concussion I had 6 weeks ago. (Although the headaches and dizziness have abated. And I can sleep without that huge bump hitting my pillow!)

As far as head injuries, you might find this article interesting: Concussions: Helping Your Brain Heal http://epilepsytalk.com/2011/05/24/c...ur-brain-heal/

As far as living in death and dying in life, I know all about it. But don't be seduced. There are NO angels and death is not "dear". As you said, it's black and scary.

But who's to say that the other side is any better?

[meesher]

Dear PhylisFJ,
No, I did not mean that death was black and scary, I meant that in the 7 (SEVEN) times I have had a TOD (time of death, called) I have never been pulled back from seeing something shiny and/or wonderful. I will not entertain the ridiculous notion that there is a heaven or a God, so, the rest of you, do not send me hate mail. I think humans are here for one reason: to treat each other well, to be kind to the planet and to learn to only indulge in meaningful things. (Like computers?) (like chocolate?) Phylis, I THINK you have my personal email. I once tried to post it, as I have several of them, but the system took it out. So, if you have one, especially the pacbell.net one, do send me words.

[PhylisFeinerJohnson]

No hate mail. But I did send you an email.

[Dolores]

I've been on Dilantin for over 40 years and seizure free for over 10.
It has given me my life back so like Jack Dreyfus I consider it my wonder drug.

But like all drugs it has it's side effects. My "favorite" is suddenly overdosing - happens to me every few years. I'll be doing fine and then start feeling lethargic and then depressed and then a bit dizzy and when I start stumbling out of balance I will finally remember "Oh yeah, I'm probably overdosing". I finally have a wonderful doctor who is more than willing to discuss my dilantin dosage with me and decide what is the best step to take.

I did have the gingival swelling and bleeding but they became so much better once I started using an electric toothbrush.

My biggest problem with Dilantin (and from what I'm reading it's epilepsy & seizure medications in general) are the memory issues. I can't remember minor random details and if my brain is under some stress my "mind goes blank" for a moment and I find difficulty connecting thoughts. I have to consciously calm my mind down before the connections link up again.
Can be really frustrating when I'm in a meeting and people are firing questions at me.

But I've learned to cope. My brother told me I need to take care of myself because I'm the only one who knows me. My doctors know more than I do about epilepsy in general. But I know more than they do regarding how I am feeling/reacting. So glad he told me that - it got me started tracking my blood levels and dosages and how I was reacting.

I've never had doctor's freely offer me a lot of information. What I know about Dilantin I learned by reading the drug information sheet that came with my medicine. But once I started asking questions, the good doctors I was seeing were willing to discuss them with me. I stopped going to the ones who wouldn't discuss my questions.

And the people here at CWE have provided a wonderful font of information which has helped me to understand why my brain does the things it does.

Maybe your dosage level of Dilantin is exacerbating problems and you might want to talk to your doctor about cutting back a bit. When I recently lowered my dosage because I was overdosing, the symptoms started disappearing in just 2 days.

I do hope you can find the proper medicine, dosage and doctor that works for you.

[meesher]

Dolores, (I think) I do not know the correct blood levels of Dilantin. I know nothing, and the internet does not take the place of a neurologist. I want to know. All of you (us) tell me what your experiences are, if you please.

[Dolores]

... I do not know the correct blood levels of Dilantin. I know nothing, and the internet does not take the place of a neurologist.

That's were the internet is helpful - the Pfizer website has the detailed drug information in case you did not receive it with your medicine. The MedlinePlus site has therapeutic drug levels. So many side-effects can result from epilepsy & the medications such as memory loss, confusion etc it is good to be able to confirm with others that what is happening to me might be caused by my epilepsy. Then I can at the least deal with it as well as discuss it with my doctor.

Having a doctor willing to discuss my situation with me (rather than just tell me to take some pills without discussing the details of why and what effect it will have) is vital for me. Otherwise I just stress about what is happening in my head.

Many years ago a neurologist upped my dilantin level to 400mg a day. At that time I didn't understand the need for blood tests. I was on that dose for 2 years when I was driving down the highway to work and the car in front of me became 2 cars - yikes! Luckily I was able to make my way back home then went to my gp because I thought I just had the flu. He took a drug level test and found I was at twice the therapeutic dosage for Dilantin - double yikes - no wonder I was feeling so odd! My neurologist at that time said I should have gotten a drug test sooner even though he had never suggested getting one before. Since then my gp took over maintenance of my epilepsy and I've preferred it that way. I know some good neurologists but for the day to day maintenance that keeps me seizure free, my current gp is great - and he takes my whole health, both mind & body, into consideration.

Life is a roller-coaster so hang on and enjoy the ride!

[PhylisFeinerJohnson]

For those looking for a neurologist or a neurosurgeon, here's a 2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

http://epilepsytalk.com/2011/05/03/n...ric-doctors-2/

It's a compilation by website forum members who have had positive personal experiences with docs over the years.

I hope it will be of help...