Primidone and Disorientation: What Users Say

• Par...
• Taken for 1 to 6 months
• April 25, 2018

For Benign Essential Tremor "I've 39, who's had tremors most of my life. Went to see a neurologist, and he suggested primidone. I started taking 50 mg of primidone, and I woke up the next day disoriented, the room was spinning. I felt drunk, high, and vomited the entire day. The doctor told me to take 1/2 the following night and the rest of the week. My neurologist told me to stick with it and it would get better. 1 1/2 months later, the same results, but then I had to do a taper off the drug. I'll never take it again. I hate having tremors, it's embarrassing, but being sick all the time isn't the trade-off I was expecting."

• NWa...
• December 14, 2009

For Benign Essential Tremor "I have epilepsy and had it controlled for several years with other medications. Recently, I was diagnosed with Essential Tremor, and the doctor prescribed Primidone. On the second day of use, I had a seizure. As I continued usage and increased dosage as directed, I started losing muscle control in my legs. I had periods where I thought I was losing my mind. I was unable to speak clearly as it felt like my tongue was swollen, but it was not. It got to the point where I could not stand up in the shower without leaning against the walls. My wife said, 'Get off that medicine!' I could not reach my doctor, so I decreased the dosage to zero. I take a lot of different medications for a number of different medical problems, I think my brain had had it."

• Tan...
• February 16, 2016

For Benign Essential Tremor "I started out with Primidone at 50 mg at night, but I couldn't shake off the side effects until about 9 am the next morning. Tired, disoriented, lethargic, and dizzy. Couldn't take it during the day when I needed it the most, so it was basically useless for me. Dr. changed this to Topiramate, which works much better. No apparent side effects, and I worked up from 50 mg a day to 150 mg in the morning, with another 50 in the mid-afternoon to keep the calmness going. I have to write a lot in my job, and although it takes about 2 hours to achieve full effect, the Primidone keeps the shakes away for a good 5 hours."

• ooj...
• Taken for 1 to 6 months
• October 27, 2017

For Benign Essential Tremor "The neuro doctor started the treatment of my writer's cramp with propranolol. It didn't help, and my heartbeat went faster instead. I was switched to benzyhexol (Bz). After taking just 2x5 mg, I'd lose control of my legs. I am 48 years old, and I was often disoriented after taking Bz. My writer's cramp condition remained the same still. About 3 months ago, my drug was changed to primidone 125 mg twice a day. It worked great, I could write legibly once again. But after 3 to 4 weeks, my writing deteriorated. The dose was increased to 250 mg twice a day, but still no improvement after 45 days of increasing dosage. I had to stop because I was having problems ejaculating. After 10 days, I resumed use yesterday 250 mg only at night. In 24 hours, I noticed great improvements. My plan is to take 250 mg weekly. I'll update in a month."

• Sha...
• Taken for 1 to 6 months
• June 9, 2018

For Benign Essential Tremor "Have tried primidone twice now - the first time it caused anxiety attacks, drowsiness, and disorientation on an increasing dose - I got to 150 mg per day - taken at night. Recently tried it again and the same again although only got to 100 mg per day. It initially helped the tremors, but it didn't seem to last long, so have abandoned it altogether now. Am also on propranolol, which helps minimally, but I think helps more when I am nervous and have to 'appear' in public!"