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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 Sincereply on Wed, 2008-06-11 - 21:49
Yes, you can expect the insurance company to pay for it. If he is not tolerating anything but, then that is the medication that needs to be prescribed.
As for waiting a week for the neuro, why must you wait unless you really want your regular neurologist. Can your regular doctor "cover"? No access to a specialist, when you need them is not acceptable.
See a thread, on this site, called Had to go off Dilantin or search via my name and see how many other folks are having this difficulty with the generic and being covered by an HMO.
I could be wrong here but, each seizure only creates a neurological pathway that increases the risk of more seizures. If he is nocturnal and in that fixed pattern, that is preferrable to seizures from consciousness that can happen anytime.
My thoughts are with you. Let me know if you find the other thread and what you think.
Yes, you can expect the insurance company to pay for it. If he is not tolerating anything but, then that is the medication that needs to be prescribed.
As for waiting a week for the neuro, why must you wait unless you really want your regular neurologist. Can your regular doctor "cover"? No access to a specialist, when you need them is not acceptable.
See a thread, on this site, called Had to go off Dilantin or search via my name and see how many other folks are having this difficulty with the generic and being covered by an HMO.
I could be wrong here but, each seizure only creates a neurological pathway that increases the risk of more seizures. If he is nocturnal and in that fixed pattern, that is preferrable to seizures from consciousness that can happen anytime.
My thoughts are with you. Let me know if you find the other thread and what you think.
Re: Phenytoin Dizziness
Submitted by Marcia M on Thu, 2008-06-12 - 09:30
I agree not having our regular neuro is unexceptable. I hate when I call and they say, she will be out all week. She said this will be the last week she will be gone for the rest of the summer. And there is a Neuro "on call" who has helped us in the past, but she is not familiar with Austins case, for example, she is the one who prescribed Ausitn take an additional Dilantin in the morning - when I questioned the timing (since he only seizures at night) the nurse was the only person available and she said "that is what the doctor ordered." What I should have done is contacted the epileptologists at Cleveland Clinic where he had his surgery - but they are hard to reach also and still not as familiar with Austin as his regular neuro that he has had since birth.
Some good news is he had ZERO seizures last night. And the only change was actually decreasing the Dilantin. His morning dose was skipped, I gave him the 100mg at night and skipped the extra chewable dose right before bed (since he was feeling queezie after giving the 100mg time release). So Dilantin is not only touchy with the dose in terms of side effects, but also in terms of effectiveness. I hope we finally found our right balance now.
I agree not having our regular neuro is unexceptable. I hate when I call and they say, she will be out all week. She said this will be the last week she will be gone for the rest of the summer. And there is a Neuro "on call" who has helped us in the past, but she is not familiar with Austins case, for example, she is the one who prescribed Ausitn take an additional Dilantin in the morning - when I questioned the timing (since he only seizures at night) the nurse was the only person available and she said "that is what the doctor ordered." What I should have done is contacted the epileptologists at Cleveland Clinic where he had his surgery - but they are hard to reach also and still not as familiar with Austin as his regular neuro that he has had since birth.
Some good news is he had ZERO seizures last night. And the only change was actually decreasing the Dilantin. His morning dose was skipped, I gave him the 100mg at night and skipped the extra chewable dose right before bed (since he was feeling queezie after giving the 100mg time release). So Dilantin is not only touchy with the dose in terms of side effects, but also in terms of effectiveness. I hope we finally found our right balance now.
Re: Phenytoin Dizziness
Submitted by Marcia M on Wed, 2008-06-11 - 20:29
Of course he is taking the generic phenytoin, can't expect the insurance company to pay for the real thing. Actually the 100 mg time release is generic and the 50 mg chewable is Dilantin. The doctor had to explain to the pharmacy that the increased nightly dose of phenytoin MUST be in the chewable Dilantin form so it's quicker acting and worn off by morning, to try to avoid the side affects. Of course the insurance company questioned it, since the chewables don't come in generic.
Our neurologist is out for the week, but the neuro on call said to skip this morning's dose, and continue with the 100 mg time release tonight. Why the time release? Why not just give him the chewable before bed, when he actually HAS seizures. I gave him the 100 mg about an hour ago, and already he is complaining of feeling sick. I can't wait until our regular neuro comes back, she told me last week that she will be gone this entire week but will be back 6/16. She left us with a prescription of 30 mg phenobarbatol in case seizures got worse. We have not used it yet, thankfully the seizures are continuing to decrease. But if we have to give up this Dilantin, I am affraid they will probably get worse again. So frustrating!!!!!!!!!!!
When our neuro comes back, I am going to suggest a lower dose time release with the nightly chewable, or maybe just giving the time release once per day, instead of in the morning and night. How long does the time release stay in the system? I thought I heard Dilantin should be taken only once per day.
Of course he is taking the generic phenytoin, can't expect the insurance company to pay for the real thing. Actually the 100 mg time release is generic and the 50 mg chewable is Dilantin. The doctor had to explain to the pharmacy that the increased nightly dose of phenytoin MUST be in the chewable Dilantin form so it's quicker acting and worn off by morning, to try to avoid the side affects. Of course the insurance company questioned it, since the chewables don't come in generic.
Our neurologist is out for the week, but the neuro on call said to skip this morning's dose, and continue with the 100 mg time release tonight. Why the time release? Why not just give him the chewable before bed, when he actually HAS seizures. I gave him the 100 mg about an hour ago, and already he is complaining of feeling sick. I can't wait until our regular neuro comes back, she told me last week that she will be gone this entire week but will be back 6/16. She left us with a prescription of 30 mg phenobarbatol in case seizures got worse. We have not used it yet, thankfully the seizures are continuing to decrease. But if we have to give up this Dilantin, I am affraid they will probably get worse again. So frustrating!!!!!!!!!!!
When our neuro comes back, I am going to suggest a lower dose time release with the nightly chewable, or maybe just giving the time release once per day, instead of in the morning and night. How long does the time release stay in the system? I thought I heard Dilantin should be taken only once per day.