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Phenytoin Dizziness
Mon, 06/09/2008 - 14:14My 12 year old son has been going up and down on his Dilantin. He has noctunal cluster seizures every night, but since upping the doseage of Dilantin, his seizures have gone from 20-30 per night to 5-10 per night. He was taking 100 mg extended phenytoin 2x daily - this did not help so neuro added a 50 mg chewable Dilantin before bed. This helped a little with no side effects. So a week later she added another 25 mg before bed, which again helped a bit. But now my son can barely walk, he is sooooo dizzy he walks around like he is drunk. He also had brain surgery almost 2 months ago and needs to continue with his physical therapy, but cannot because he can't even stand by himself. The neuro did levels and says they are fine but we cannot go up anymore, and the dizziness is a side effect of the Dilantin. So we need to decide if we want the seizures or side effects.
My question is this - for those of you who are taking Dilantin, did you see this kind of side effect when you started? And if so, does this go away, or did you have to decrease your dose? How long does it take for the dizziness to subside? I would hate to see his seizures go back to where we started from, phenytoin seems to be the only med that has shown some improvement in my sons seizures in years.
Comments
Re: Phenytoin Dizziness
Submitted by snakestrike on Thu, 2008-06-12 - 15:41
Re: Phenytoin Dizziness
Submitted by macauslr on Fri, 2008-06-13 - 15:10
I've been on Dilantin for almost two years following surgery to install a new VP shunt (two TC's post surgery spaced six months apart and over a thirty "migraine" auras which I think were actually seizure related).
They started me on 100mg daily and bumped it up over time in order to see if it would decrease the auras. I maxed out at 300Mg daily and the auras have all but disappeared (they left me with debilitating nausea and a wicked headache).
The Dilantin is doing it's job but the side effects, dizziness among them, is present and while not debilitating, it's an issue - I've described it as feeling like I'm drunk. I have tripped, lost my balance and fallen a half dozen times in the last six months, but thankfully injured nothing more than my pride :-)
I'm on the fence about switching meds as having my symptoms under control is an enormous relief , but I think the fact the drug makes me so clumsy and prone to falling will give me no choice but to eventually in the short term switch as eventually I am going to take a spill and seriously injure myself.
I've been on Dilantin for almost two years following surgery to install a new VP shunt (two TC's post surgery spaced six months apart and over a thirty "migraine" auras which I think were actually seizure related).
They started me on 100mg daily and bumped it up over time in order to see if it would decrease the auras. I maxed out at 300Mg daily and the auras have all but disappeared (they left me with debilitating nausea and a wicked headache).
The Dilantin is doing it's job but the side effects, dizziness among them, is present and while not debilitating, it's an issue - I've described it as feeling like I'm drunk. I have tripped, lost my balance and fallen a half dozen times in the last six months, but thankfully injured nothing more than my pride :-)
I'm on the fence about switching meds as having my symptoms under control is an enormous relief , but I think the fact the drug makes me so clumsy and prone to falling will give me no choice but to eventually in the short term switch as eventually I am going to take a spill and seriously injure myself.
Re: Phenytoin Dizziness
Submitted by scratch on Tue, 2008-06-10 - 22:58
too much dilantin will make u walk around drunk.....i been taking it for yrs i know..... i was in hosp for something else and my level was all out of whack.......the level should be between 10 - 20 i believe...not sure about that.....when they checked my level of dilantin it was at 37.5......almost lethal.....surprised i could still work.....i was walking around and stumbling into things and my speech was terrible.....please have his level checked again and keep an eye on it....take care and god bless.....
too much dilantin will make u walk around drunk.....i been taking it for yrs i know..... i was in hosp for something else and my level was all out of whack.......the level should be between 10 - 20 i believe...not sure about that.....when they checked my level of dilantin it was at 37.5......almost lethal.....surprised i could still work.....i was walking around and stumbling into things and my speech was terrible.....please have his level checked again and keep an eye on it....take care and god bless.....