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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 Marcia M on Tue, 2008-06-10 - 09:09
Thank you for the response Drew.
Yes, we have tried almost every drug possible, including Depakote. Currently he is taking Lamictal, Topamax, Dilantin and Keppra. Before bed he also takes valium and lorazapam. We are in the process of weaning the Topamax, since it is the only drug that has not shown any decrease in seizures. The Keppra stopped his TC and Lamictal helps with the severity of the PC (when we try decreasing Lamictal, he becomes incontinent during seizures). And of course there is Dilantin, last night he only had 3 seizures (these are short PC seizures which last only 5 seconds each). I know going from 30 seizures nightly down to 3 is thanks to the Dilantin, because the other drugs he was on for many years now, the Dilantin is new to us, and showing great results. I think we are going to stick with it for a few more days, and call the doctor, hopefully she prescribes him a lower time release for his day dose and we keep the high dose at night. She said with the chewables, its quicker acting but shorter lasting, so the high chewable dose at night should ware off by morning, giving him less side effects during the day.
I wish these night seizures were in fact NOT seizures, but we've had our share of EEGs. My son just had an anatomical hemispherectomy in April at the Cleveland Clinic. When he was still seizureing after the surgery, they did extensive tests to see if these were just post op seizures. He was put in VEEG monitoring unit and they said these are the exact same seizures as before surgery (except before surgery he had 10+ more intense startle seizures per day, instead of clusters at night). Since the seizure focus was removed, they are blaming it on a mirror focus, meaning the other side of the brain has learned how to seize on its own, without an actual focus. Yes, I know, it's a bummer. But they said in 6 months time, we should see less seizures after the brain has healed, at that time we will know what we are working with, and what drugs we should start weaning more of. That is why I am so insistant on keeping the Dilantin, if it is stopping the seizures, the other hemisphere might calm down and "forget" how to seize if it isn't constantly seizing.
This ended up being a lot longer than I was expecting, sorry this is so long, for those of you who are reading.
Marcia
Thank you for the response Drew.
Yes, we have tried almost every drug possible, including Depakote. Currently he is taking Lamictal, Topamax, Dilantin and Keppra. Before bed he also takes valium and lorazapam. We are in the process of weaning the Topamax, since it is the only drug that has not shown any decrease in seizures. The Keppra stopped his TC and Lamictal helps with the severity of the PC (when we try decreasing Lamictal, he becomes incontinent during seizures). And of course there is Dilantin, last night he only had 3 seizures (these are short PC seizures which last only 5 seconds each). I know going from 30 seizures nightly down to 3 is thanks to the Dilantin, because the other drugs he was on for many years now, the Dilantin is new to us, and showing great results. I think we are going to stick with it for a few more days, and call the doctor, hopefully she prescribes him a lower time release for his day dose and we keep the high dose at night. She said with the chewables, its quicker acting but shorter lasting, so the high chewable dose at night should ware off by morning, giving him less side effects during the day.
I wish these night seizures were in fact NOT seizures, but we've had our share of EEGs. My son just had an anatomical hemispherectomy in April at the Cleveland Clinic. When he was still seizureing after the surgery, they did extensive tests to see if these were just post op seizures. He was put in VEEG monitoring unit and they said these are the exact same seizures as before surgery (except before surgery he had 10+ more intense startle seizures per day, instead of clusters at night). Since the seizure focus was removed, they are blaming it on a mirror focus, meaning the other side of the brain has learned how to seize on its own, without an actual focus. Yes, I know, it's a bummer. But they said in 6 months time, we should see less seizures after the brain has healed, at that time we will know what we are working with, and what drugs we should start weaning more of. That is why I am so insistant on keeping the Dilantin, if it is stopping the seizures, the other hemisphere might calm down and "forget" how to seize if it isn't constantly seizing.
This ended up being a lot longer than I was expecting, sorry this is so long, for those of you who are reading.
Marcia
Re: Phenytoin Dizziness
Submitted by Sincereply on Wed, 2008-06-11 - 00:42
Is he taking the generic Phentoin (by Taro) or the brand name reformulated Dilantin? Phenobarbial seems to impact each person differently however, these two drugs are an ancient standard. However, I don't really know how much research has been devoted solely to their effects on growing children.
Sincereply
Is he taking the generic Phentoin (by Taro) or the brand name reformulated Dilantin? Phenobarbial seems to impact each person differently however, these two drugs are an ancient standard. However, I don't really know how much research has been devoted solely to their effects on growing children.
Sincereply
Re: Phenytoin Dizziness
Submitted by drewmo on Mon, 2008-06-09 - 23:56
Marcia,
so sorry to hear about the hard time your son is having. I have had two experiences with Dilantin (Pheytoin): my doctor first tried me on it 25years ago when I was first diagnosed with TLE, and frankly I just could not tolerate it, even though I kept at it for several years. It totally spaced me out when I got anywhere near the dose the doctor said I should be taking, and it never got any better.
In the end I stopped taking it... and ultimately switched to Depakote for 4-5years, which I tolerated very well (at least I thought!... check out my story elsewhere on this forum).
I was hospitalized some time ago with seizures, and they put me on Dilantin with Keppra and Depakote with intravenous Ativan. Some cocktail huh?! Again, the Dilantin spaced me out completely, as they had me on a high dose. Only when they dropped off the Dilantin and replaced it with Trileptal did the world stop spinning. So for sure, there are other drugs that may not have such side effects for your son.
But everyone of us is different, and we all react differently to the AEDs: I really encourage you to talk to your doctor about different possible drugs, or combination of drugs. And seriously consider the tradeoff of increased seizure activity versus heavy drug usage. It really is a compromise.
Also, (if by chance you haven't already) please make absolutely sure the seizures are truly epileptic though EEG monitoring, rather just than a doctors diagnosis.
Good luck,
Drew
Marcia,
so sorry to hear about the hard time your son is having. I have had two experiences with Dilantin (Pheytoin): my doctor first tried me on it 25years ago when I was first diagnosed with TLE, and frankly I just could not tolerate it, even though I kept at it for several years. It totally spaced me out when I got anywhere near the dose the doctor said I should be taking, and it never got any better.
In the end I stopped taking it... and ultimately switched to Depakote for 4-5years, which I tolerated very well (at least I thought!... check out my story elsewhere on this forum).
I was hospitalized some time ago with seizures, and they put me on Dilantin with Keppra and Depakote with intravenous Ativan. Some cocktail huh?! Again, the Dilantin spaced me out completely, as they had me on a high dose. Only when they dropped off the Dilantin and replaced it with Trileptal did the world stop spinning. So for sure, there are other drugs that may not have such side effects for your son.
But everyone of us is different, and we all react differently to the AEDs: I really encourage you to talk to your doctor about different possible drugs, or combination of drugs. And seriously consider the tradeoff of increased seizure activity versus heavy drug usage. It really is a compromise.
Also, (if by chance you haven't already) please make absolutely sure the seizures are truly epileptic though EEG monitoring, rather just than a doctors diagnosis.
Good luck,
Drew