Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Dilantin 30 Mg capsules

Sat, 01/15/2011 - 00:45
Has anyone else changed from the older Dilantin Kapseals ( white with band in middle)  to the newer Dilantin capsules, either the 100 mg or 30 mg capsule?  Did you have any side effects or increase in seizures after the change? Did you take precautions like avoiding driving after the switch, frequent blood monitoring?  If so, for how long? I have taken Dilantin for 20 years.  It was prescribed after I had a  focal seizure. I also had a grand mal seizure as a child and untreated seizures as an infant. When the 100 mg Kapseals were no longer available I switched to the 30 mg Kapseals and have been taking seven each night.  Now those are no longer available and I must switch to the newer 30 mg capsule ( half pink, half white) soon. I am very scared because I read that it might be absorbed differently causing seizures. I have not had a seizure since starting Dilantin and I drive everyday.  I would love to hear from others what their experience has been, both good and bad.  Thank you.

Comments

Re: Dilantin 30 Mg capsules

Submitted by 3Hours2Live on Sat, 2011-01-15 - 04:23
Hi Joanne, When I was switched to the new formulary 100-mg Dilantin (half orange and half white) from taking the old 100-mg Dilantin (orange band) for one year, at the same daily dosage, my blood level for Dilantin more than doubled in about two months (the way too high level was measured in an ER). My doctor said she didn't know about the change, and then she tried to tell me that only the irrelevant inert ingredients were changed, not requiring any additional blood level monitoring or dosage adjustments. I had a difficult time stabilizing my blood levels again (stable levels had proven impossible with generic phenytoin over a 2 year trial, before switching to the Brand Name "old" Dilantin, and reaching stable levels for about a year). This formulary change over was about 2 to 3 years ago for me, then after about eight months or so, I stopped the new Dilantin and switched entirely to Keppra because of bone-loss problems. I think the capsule change I'm talking about is listed at: http://www.epilepsy.com/pdfs_med/epilepsy_phenytoin.pdf and http://professionals.epilepsy.com/pdfs/PFZ_DIL_173_LetterPH_D01.pdf (When I showed the print out to my doctor, while asking for more frequent blood monitoring to avoid more ER trips, she ripped it out of my hand, tearing it in half). I quit driving about 24 years ago. Tadzio

Re: Dilantin 30 Mg capsules

Submitted by Joanne J on Sat, 2011-01-15 - 14:27
Hi Tadzio,                                                                                                                                                                                                                                                                                                                                             Thank you so much for replying.  It sounds like you had a really rough time with the switch.  Did you have other symptoms before your high blood leval was measured?  I hope you are doing well on Keppra. I have osteoporosis also, probably related to Dilantin and may have to eventually consider switching to another med. When you went back on brand name Dilantin after the 2 year trial of generic phenytoin, did you take the "new" Dilantin ( half orange,half white) again or were you able to find the "old" Dilantin ( white with orange band)?  If it was the "old" Dilantin, how were you able to locate it?  I am having a hard time getting answers from doctors who seem to think that I am overreacting and am overly anxious about this.                                                                                                                                                                        Joanne 

Re: Dilantin 30 Mg capsules

Submitted by 3Hours2Live on Sun, 2011-01-16 - 08:05
Hi Joanne, The first strong symptoms were my feeling very warm and "hyper", instead of the normal more drowsy, a short time after taking my nightly dose. Then, insomnia and exagerrated sensations of touch, sight, smell, with not being able to coordinate my physical actions and eyes hardly at all, resulted in my not being able to sleep the whole night, I called my doctor's office, but lost consciousness and collapsed during the call, and regained partial consciousness for a couple brief times later during the ambulance trip to the ER. A few hours later, when I was halfway normal again, ER told be to skip a couple days of taking Dilantin, then take a smaller dosage daily again, and have my GP's clinic monitor my blood levels more closely. The dramatic overdose effect was rather abrupt, and while the discoordination slowly increased over days, with increasing drowsiness, the flip-flop to insomnia and hyper-alerterness and intense discoordination was in just a couple hours. I was put on generic Dilantin for my first refill prescription after leaving the hospital. My neurosurgeon put me on Brand Name "old" Dilantin during my hospital stay, and Medicaid changed it to the generic with the refills. Medicaid changed its mind about the generic because each different batch-run of the generic drastically changed my blood levels of the phenytoin, and when it was a major drop with resultant seizures, it resulted in great risk and more Medicaid ambulance expenses that greatly exceeded the cost savings with the generic. I was put on the "new" Brand Name Dilantin after the pharmacy had received only the "new" Dilantin in stock, after exhausting its supply of the "old" Brand Name. I was on Tegretol and Tylenol for seizures and migraines for almost two years before the 1989 Loma Prieta earthquake resulted in the Medicaid/MediCruz authorizing neurologist disappearing, and as the combination of drugs resulted in a bad bout of kidney and liver failure, the snafu stopped my AEDs until my neurosurgeon started the Dilantin in 2006, with the prescriptions then switching over to being from local Medicaid GPs. Tadzio

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.