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uncontrolled seizures
Wed, 10/03/2018 - 14:08Topic: Share Your Story
my husband was on dilantin 300mg twice a day so (600mg total daily) and was well controlled on dilantin no seizure activity for like 6 years. With the recent studies of long term side effects his doctor decided to switch him to Keppra 2 years ago he's on 3,000 a day and has been having atleast 4-5 seizures a year obvious this isn't the right medication for his seizure's any recommendations on another type of medication. He has the grand mal seizures but only at night and his seizures happen within the first 10 minutes of him falling asleep. I know the dilantin was XR "extended release" i wonder if that's better then just a regular tablet? The Keppra that he is on isnt XR.
*Were going to see his neurologist in a few weeks so they might be changing his medication so here we go with trialing a new medication again and figuring out whats the right dose that will control his seizures.
Any feed back would be helpful.... thank you!
Very scary seeing him have one and lots of sleepless nights after he has a seizure! i just want answers.
thank again!
Comments
If you don't mind, what side
Submitted by bebop7 on Thu, 2018-10-04 - 09:53
If you don't mind, what side effects were you trying to avoid? It looks to me that it's either Dilantin for him or seizures. PLUS, his doctor can write the prescription so they will not try to give him cheap (made in china) "Generic" Phenetoin/ Dilantin
thank you for this
Submitted by Lizzybabe718 on Fri, 2018-10-05 - 13:28
thank you for this information I would love for him to go back on Dilantin just not sure if he's doctor will agree. fingers crossed!
I too am on Dilantin and have
Submitted by birdman on Thu, 2018-10-04 - 08:28
I too am on Dilantin and have found it to be the one that best controls my seizures and leaves me with the least side effects. It does not control my seizures perfectly but I have never been on 600mg a day. The highest dose of Dilantin I ever took was 400mg/day. So doctors have tried adding more medications and none has worked as comfortably and well as Dilantin so I am still on it. I have been warned about the long-term possible side effect of deterioration of bone tissue due to Dilantin not allowing the absorption of vitamin D and calcium. But the matter that we patients need to always weigh is cost vs benefit. If your husband is now having 4-5 seizures a year this is not good for his health. Present this question to the neurologist: which is a more serious concern; the uncontrolled seizures or the possible long-term side effects of Dilantin? Dilantin is a very old drug and there are many more modern and supposedly better drugs on the market for seizures control. But I just finished reading a book, The Truth About the Drug Companies, where author Marcia Angell suggests one of the biggest problems with drug testing that gets done before it's FDA approved is that it does not get compared to any older drugs. Controlled studies only compare against a placebo to prove that a drug works for its indicated purpose, but no studies are done to prove the new ones are more or less effective than the older ones.