More Dilantin ugh!

[Birdbomb]

My neurologist called me a few weeks ago. He wants me to double my dosage of dilantin from 300mg to 600 mg. I am really having a hard time with that last 100mg . Dizzy, fuzzy headed, jaw clenching, eyes crossing and sleeping very deeply, even my ears/hearing are doing something strange. Anyone else? Any helpful comments or suggestions?

[Nakamova]

Is the last 100mg really necessary? Maybe you've reached a good level and shouldn't go any farther. Usually dizziness and nystagmus (eye crossing) are signs of being on too much Dilantin.

[Endless]

How are your seizures on 100mg less? Is your seizure control better on 600mg?

Your doctor prescribes, but you are in control. You make the decisions on what's best for you, and what balance you want between side effects and seizures. If this isn't acceptable for you, call your doc and tell him that. He may have another solution. Or if not, you choose what's best for your life: 500mg or 600mg.

[Meetz1064]

your blood levels done, BB. And have a serious talk with the doc. You're on too much, it sounds like. Nystagmus isn't cool. No wonder you're going nutty.

[Jbo57]

My neurologist called me a few weeks ago. He wants me to double my dosage of dilantin from 300mg to 600 mg. I am really having a hard time with that last 100mg . Dizzy, fuzzy headed, jaw clenching, eyes crossing and sleeping very deeply, even my ears/hearing are doing something strange. Anyone else? Any helpful comments or suggestions?

I can TOTALLY relate. Twice since I've been on dilantin they have decided that my level wasn't in the therapeutic range and have upped my level. The only way I could describe it to my wife and friends is that everything was "half a bubble off". When the blood work was done they found that the level was much too high and then backed me off. I'm on 450 a day now and everything seems normal. What they did for me is they began to suppliment the dilantin with another anti-seizure drug. I would suggest that you talk to your doctor and have a blood level done because what you are describing is, as the others have said, an overly high level in your system. However, DO NOT ADJUST THE DOSE ON YOUR OWN. They will get it right, be patient and God bless you! You are in a big club and we know how you feel.

[Birdbomb]

I slept most of yesterday and went to bed early. This is happening almost every other day. My head is buzzing, I find myself gritting my teeth, my vision sucks worse than normal and I don't want to even talk about the cognitive confusion. So last night I took one instead of two and did the same thing this morning. Also I have been reading up on dilantin toxicity and I'm pretty sure this is what's going on. I don't think my doctor took into considerations all the many medications I am on because they can alter dilantin's absorption.

I'll be making an appointment to see my neurologist this week, but there's a lot on my schedule plus Rachael's 7th birthday is Tuesday w/ party (ugh! I HATE kids' parties)

Thanks everyone! You've all been very helpful, it's so nice to have answers at the touch of your fingers!

[gigi]

wow - doubling your dose sounds a little over killish. There are so many things to consider when your level is low. I have been on the stuff since 1980, with my level being all over the map for multiple reasons. I can see them upping your dose 100 or 200 mg, but double, geeze! We know how we feel on the meds, not the doc. - so yes I have done my own tweeking through the years on my dosage. It's my body, so I know by now how I feel on too much.

[Birdbomb]

Overkill is the word!

I don't feel as yucky today. Screw this! I'm keeping with the original dosage. But I'm calling Dr. Killmewithanoverdose first thing tomorrow.

[jonnyd]

I too have recenty had my doctor up my level of dilantin and combie it with keppra. I'm also having double vision, and EXTREME hyperactivity. Is losing focus and trouble breathing common? I was hoping it may go away as i have just started this combo of medication. I feel like im going LoCo (but ive always been crazy just not to this extent). Is ther another option on meds that maybe i could discuss with the doc?? I'm new here and full of questions. My levels were low as well (at about 3 insted of the 15 the doc said i should have been at) so my dosage was upped. Arrrrrrrrrg

[Meetz1064]

some seriously WEIRD issues with Keppra..........Dilantin, no, but I was on it for 35 years.

Go call your neurologist, NOW. Get some blood levels done, and you may just need to pull of the Keppra pronto....BUT be SURE to explain to the doctor IN DETAIL what's going on .

I'm telling you, I turned into the Energizer Bunny on Speed on that stuff.......in 9 doses.......with Kaleidoscopes and all......and more.......

[Bernard]

Have your blood syrum checked. Maybe 500mg/day is a better dosage for you. The side effects sound like you are on too high a dose.

[Endless]

Hey, Birdbomb,

That buzzing in your head... does it feel like there is a giant bumblebee in there? It did for me on Topamax. I had a problem with a drug interaction. That may be happening to you. You may want to call your neurologist ASAP.

[Birdbomb]

Called my neurologist to discuss the side effect problem. Here's the fun part, he did not make a note of HIS original call in my records but vaguely remembered talking to me. GRRRRR! Anyway, he said it was okay to go back to my usual dosage and make an appointment. He now wants to try a different anti-epileptic drug. *sigh* The earliest I could get in to see him is Sept 20th.

[Meetz1064]

a good thing that he's listening to you, BB. All of the stuff you're going thru is not fun.........I have the nystagmus on a permanent basis now after 35 years on that stuff. *eyeroll*

Have you put yourself on a cancellation list to get in any sooner, if possible?

[neilB]

some seriously WEIRD issues with Keppra..........Dilantin, no, but I was on it for 35 years.

Go call your neurologist, NOW. Get some blood levels done, and you may just need to pull of the Keppra pronto....BUT be SURE to explain to the doctor IN DETAIL what's going on .

I'm telling you, I turned into the Energizer Bunny on Speed on that stuff.......in 9 doses.......with Kaleidoscopes and all......and more.......

AH HA, Kaleidoscope...............Funny that's happening to me with the Keppra. Just a coincidence? I think not. Thanks for mentioning that!

[gigi]

Well, after my seizure last month and the trip to the E.R. - I was hypered up on Dilantin (intravenous dose to up my level). My eyes are still doing the two step, I had the teeth grinding like you Birdbomb, now I have kinda crashed, havin' trouble sleeping, depressed. Dragging myself out of bed, asking myself is this living or existing?! Granted, my Dad died last month, so I have been trying to grieve on top of the seizure. My hormones are less than balanced, so that is not helping. I am just frustrated that I plan my whole life around the amount of energy or fatigue I am having at the present moment. I compare it to a fifty pound weight attached to my neck. Bleh

[crazybarbie]

I'm also on Dialantin. I'm on 450 mg Trileptal in the morning and 400 mg of Dialantin nightly and another 150 mg Trileptal nightly. Seizures have stopped but I'm having hand weakness, hand tremors, crossing eyes and extreme fatigue.

I'm hoping my Neurologist will lower the dosage. I do not like how I'm feeling on Dialntin at all.

[Birdbomb]

Pretty icky feeling. I'm back @ 300mg a day but still having the eye crossing thing going on, especially when I'm sleepy or tired, rather more than usual.

[Endless]

Oh, Lord, Birdbomb. I'm so tired for you. I wish I could take it away for you. This is a really ICKY side effect.

Will you call your doc and get things adjusted again? Eyes crossing is not good. If you have insurance you may also want to drop by an opthamologist to make sure whatever is happening isn't permanent, or won't become permanent. Sometimes some kinds of nerve or eye damage isn't reversible.

[foul ball]

I was on 500mg of dilantin for over 25 years. Went toxic last year. However, over the years some classic dilantin side effects slowly became part of my life without my associating them with the dilantin. The toxic side effects: neuropathy, pins & needles, sleeplessness, near nervous breakdown, total lack of concentration........ were corrected by reducing my intake to 400mg per day. Unfortunately, I started having breakthroughs. Currently changing meds.