FDA Approved Drugs and User Comments: PHENYTOIN

User Comments:

Dilantin (phenytoin) for Epilepsy: “Evening,I have been on this medication since I was 12 years of age.Why do doctors or neurologists NOT tell you about Epilepsy? About the Half Life of Phenytoin, about Sudden unexpected death in epilepsy (SUDEP)? Those who have Epilepsy do not necessarily know or at all ANYTHING about that cause people in general think you are WEIRD. SICK?”

Focal Epilepsy (taken for 10 years or more) August 20, 2017

Dilantin (phenytoin) for Epilepsy: “I started dilantin in 1974. About 25 years of taking it has given me peripheral neuropathy. No Dr in all those years told me that it might do this to me. I am changing over to Keppra but the damage is done. My balance is off and for PAIN I take lyrica. If dilantin works for that’s great, but we should be informed that neuropathy might happen.”

LJWeezie August 14, 2017

For Myotonia Congenita: “It’s been only a week I am on it , reduced my anxiety, it reduced unwanted electrical activity in both hemispheres(was irritating) its life saver for me, SE : gum growth ,low vitamin d causing joint pain”

Neweric August 11, 2017

For Trigeminal Neuralgia: “I am taking Dilantin and Tegretol, for trigeminal neuralgia, I had what they called breakthrough pain and that was my Neurologist put me on Dilantin. I have been on both for close to a year or so now, but I am finding out that I seem to be reacting both or one but I do not know which one I am reacting to. The pain is gone but I am fighting with the side effects of which drug I am unsure as they ave similar side effects.”

AKRIKA (taken for 1 to 2 years) June 7, 2017

Dilantin (phenytoin) for Epilepsy: “After 41+years on various meds many included this one. Unfortunately, it must be monitored closely and depending on factors like body weight, other meds taken, caffeine intake, and more, it can be a difficult balancing act. Dilantin toxicity has happened and is a living hell for all. The med can be good to stop nocturnal tonic clonics if you are having those, which are life-threatening. Do your research, make sure dilantin levels are taken periodically at trough and consider more than just the 20 max if you take a does afterward. Make sure you have a liver profile taken periodically. A doc may have to be reminded but it’s best to have one who knows meds and does bloodwork regularly. Find a good epileptologist you get along with.”

stex (taken for 10 years or more) December 24, 2016

Dilantin (phenytoin) for Seizures: “Brain rot. I have been on dilantin for over 40 years. Have just discovered dilantin is cause to numbness in legs, feet, balance and walking control. How so?” It’s called cerebellum atrophy. Thats where your cerebellum shrinks (my case about 40%) It will get worse if I continue to take it, putting me in a wheel chair. Only one medicine does that to you- Dilantin. DO NOT TAKE IT. If you are on it, get off it (as I am about to do) It was also considered at one time the most toxic medicine out there. Look it up in PDR. Did it stop seizures? yes. Do I want to be a cripple and eventually have to be fed. No. Get off it.”

NVRick (taken for 10 years or more) December 20, 2016

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