Primidone for Seizures User Reviews

• Vol...
• July 3, 2013

Primidone "I became ill in 1982 at age 33 with encephalitis, brain damage on the temporal lobe, and grand mal seizures. The next year, I was also diagnosed with lupus in addition to epilepsy. It took 5 years and NIH treatment of 250 mg of Mysoline 3 times a day to control my seizures. It has been controlling my seizures, and I am now 65. AARP denied my brand name Mysoline for seizures, even though I was going to pay high co-pays. We pay our own insurance, so this is a real problem. The worst is fighting AARP to pay their part when I know Mysoline works for 27 years. How can a person at a desk just suggest other medicines to take when your doctor and you state that this is the best one for you?"

• A N...
• December 23, 2010

Primidone "I was prescribed this medicine back in the late '80s for seizure control. I recently stopped using this in 2010. It controlled my seizures well, but I did not realize the side effects of it. Side effects were irritability, anger, increased depression, and behavior. Because I literally grew up with this medicine, I can now see these issues after changing the medicine. My brain was built to use it during puberty/young adult. This does control seizures and actually suppressed anxiety by slowing down all brain functions. Be aware that epilepsy is comorbid with depression quite often and this medicine may enhance/increase depression symptoms."

• cle...
• January 28, 2008

"I started taking the generic drug Primidone 1-12-08, and so far, it has controlled the shaking. I have been told I have seizures that come and go. I can't get my words out, and at times, I can't figure out what word or name I want to use. My coordination suffers, and I feel like my mind is kind of cloudy. My hands also shook when I had these seizures. So far, I would rate this drug a thumbs up."

• Anonymous
• October 24, 2009

"I have been using this medication for approximately 35 years. I have had two healthy children during this time. I am now in my 50s and find that I am experiencing tiredness, fatigue, and incoordination to the extent that I stumble or run into people or things easier than before. Whether this medication is a cause of my clumsiness or not, I am not sure. It has helped to control my seizures since my last one in 1975."

• Bil...
• Taken for 1 to 6 months
• August 20, 2016

"I'm a 64 yr old male. I have essential tremor of the hands and neck/head. Until 5 yrs ago, it had gone undiagnosed or misdiagnosed for 45 years. I've been taking primidone for 2 months now. I've recently increased the dosage to 100 mg - 2 times a day. This is the only essential tremor drug I'm taking at this time. I've been on Inderal, Topiramate, Gabapentin, Carbidopa/Levodopa and combinations. Recently, phenol injections into my neck muscles did more harm than good. Now, I can't even lift my arms above my shoulders. Here's hoping the primidone increase has some effect on my hands and head shakes. No side effects so far. I have not figured out why some days I have almost no tremor. Have tracked my diet, doesn't seem to be connected?"

• Mis...
• Taken for 2 to 5 years
• August 31, 2018

"I have Addison's disease (Schmidt's syndrome, more precisely) and epilepsy, but I was initially diagnosed with essential tremors also. This definitely helped my hand shaking, and I still take it. I am on Topamax, hydrocortisone, and my HRT (including thyroid) also. I have taken Primidone for 4 years and Topamax for 3. I also have vagus nerve stimulation (VNS). A year ago, a strange rash appeared on my legs that will not go away despite every method used by my dermatologist. He says it's one of the meds. Under hospital care, I came off of Topamax for a week, and the rash did not go away or lighten, so we think it may be the Primidone. I just read more comments from others saying they have had skin issues after prolonged usage. Guess it is time to try to discontinue my beloved Primidone! Would love to see more information and studies about this side effect! I thought I had leprosy!"

• Old...
• January 8, 2017

"I am 62 years old. Since I was 19, I had 4 seizures and was on Dilantin 500 mg/day and Mysoline (primidone) 250 mg 3 times/day. Then, 2 months before I became 62, I had a seizure. The neurologist took me off primidone and put me on topiramate 100 mg twice daily. I could feel my change: confusion, loss of appetite, and then, 32 days later, I had a seizure worse than the one earlier. I went back to him, and he took me off topiramate and increased my primidone to 2 x 250 mg primidone twice/day for a total of 1000 mg primidone, along with the original Dilantin. I am just starting to feel normal again, like I did for the past 43 years, with no side effects that I am aware of yet, plus it was something that I was taking for years and never noticed any of the side effects listed."

• iri...
• August 12, 2009

Primidone "I have been taking this medication for 30 years and have never had a side effect or seizure. Works very well for me. No complaints."

• Anonymous
• January 8, 2009

Primidone "Great seizure control. Low side effects after first 2 weeks."

• ega...
• October 20, 2008

"I have been using primidone for over 20 years for my epilepsy. I have not suffered any side effects. I also give the medication a thumbs up."

• drm...
• Taken for 1 to 2 years
• May 29, 2015

Primidone "No seizures, no side effects."