Primidone and Tremors: What Users Say

• Coz...
• October 22, 2014

For Benign Essential Tremor "Started out 10 days ago, 1/2 50mg tab at night and morning. I am up to 3 in the morning and 3 at night. Doctor says stay on them until we meet in 10 days. This is not working. Tremors are continuing, sometimes to an extreme. We need to revisit this prescription. Try something else."

• Anonymous
• December 9, 2009

For Benign Essential Tremor "I was diagnosed with ET 6 weeks ago. I was prescribed Primidone. To date, I still am having serious side effects. My tremors are continual, even to the point where my left arm feels 'dead'. Generally, I feel drained, dizzy, and sick to my stomach. My voice is halting, with shaky patterns, and is more affected when I am tired. I find it very difficult to take this medicine and will be calling my doctor to discuss any other options."

• Ups...
• Taken for 1 to 6 months
• January 17, 2021

For Benign Essential Tremor "It affects all my other meds, and the thyroid med affects it. I live feeling like a zombie. It has decreased blood levels of the antidepressant med so much that the result is primidone causes major depression. I never do anything I need to do in order to function in my normal routine. One month, 50 mg at night. This week upped to 100 mg. Last night I dropped back to 50 mg. I’m going to wean off that. Age 65+. Propranolol caused 2/3 hair loss. I’m done. Rather have the tremors."

• Min...
• Taken for 1 to 6 months
• October 12, 2017

For Benign Essential Tremor "I grew up playing classical piano, and as I got older, my hands would shake at every performance. By the time I was a senior in college, it was anxiety provoking to play concerts. Then, in my mid-20s, the tremor started happening in social situations, picking up glasses, soup is the worst, and even when I was alone. It has very little to do with feeling nervous. I have much empathy for all the comments about people saying, 'Are you nervous?' It is so annoying. I saw a neurologist who started me on Primidone. I tried it for a few months at 50 mg BID, but it just didn't cut the tremor down enough. I'm a medical student now, and I felt like it slowed down my mind. I couldn't think quickly. Propranolol works the best for me, 80 mg ER."

• JaP...
• Taken for 1 to 2 years
• January 11, 2021

For Benign Essential Tremor "No help for essential tremor was offered to me until about a year ago in the form of primidone. What a help it has been! I ran out once, and by the third day, the shaking was horrible. I’ll never let myself be out again until a permanent cure is found."

• Ern...
• September 5, 2016

For Benign Essential Tremor "I have had ET's for several years and taken various medications with varying degrees of success. I have recently been put on 50 mg of Primidone, four in the morning, two in the afternoon, and four more at night. But the tremors are worse than ever. I can't even read my own writing. It is just scribbling. This stuff is a complete loser. I definitely need something different."

• ano...
• Taken for 10 years or more
• September 17, 2019

For Benign Essential Tremor "I started taking Primidone about 10 years ago-50 mg/day. I was delighted! I could write my name again! When the tremor got worse, I increased to 2/day. Now I have the max dose of 6/day, and the tremors keep getting worse. First my left hand, then both, now head, tongue, and voice. Here is what I have recently learned: I learned that the drug depletes the body of B12. Now I take MethylB12 injections every other day. That helps a lot! Next, I learned that ~80% of drugs made outside of the US-I suspect mine is (AMNEAL PHA)-are frauds, and the US has no jurisdiction there. So what am I really getting? Read 'Bottle of Lies' by Katherin Eban."

• Har...
• November 23, 2017

For Benign Essential Tremor "50 mg/day. Helped, but after a couple of weeks started to itch in very personal places. Kept taking because itch was preferable to shakes. Then developed vertigo and quit taking it. Vertigo went away. Resumed because vertigo and itching were preferable to shakes. Vertigo and itch subsided after 4 weeks. Shakes somewhat better."

• But...
• February 2, 2020

For Benign Essential Tremor "I've noticed, as a very young child, I had shaky hands and was constantly bullied. I couldn't take it anymore. I wanted to know what was going on with my hands. So, about the age of 32, I saw a neurologist and finally got an answer. He told me it is called benign essential tremors. He put me on gabapentin, which caused me bad side effects, automatically, I was told to stop taking it. I was put on primidone, and it has been working for about 8 years. The past couple of years, I've been having problems, so recently I saw my primary, she stated that primidone is linked to drug-induced lupus. I have swelling around my mouth, it's not going away. My ANA blood test came back very high, she reached out to my neurologist and told him about everything, and he weaned me off primidone, and now I'm taking zonisamide. My neurologist never heard of drug-induced lupus, I asked him. Now I have to be careful with zonisamide."

• Sha...
• Taken for 10 years or more
• February 20, 2020

For Benign Essential Tremor "I am a 59-year-old female. I first noticed slight tremors in my hands my senior year of high school. They were something I could live with; people just thought I was nervous all the time. About 10 years ago, they came back with a vengeance. My neurologist prescribed 100 mg of primidone twice a day. They continued to get worse, and they added propranolol. This helped with my tremors but made my blood pressure very low to where I was in the ER twice in one day; falling down and not able to walk a straight line. We stopped that med. I am now on 500 mg twice a day and can hardly function. I can barely type, very hard to eat, spill things, lose my balance, and fall. Very frustrating, but I don't know what else to do. I don't DBS or anything like that. I've read where people can't walk anymore or control their bladder. So I just put up with it."

• cle...
• January 28, 2008

For Seizures "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."

• Rog...
• Taken for less than 1 month
• February 27, 2017

For Benign Essential Tremor "Issues with tremors of the trapezius muscles (bobblehead). Dizziness, nausea within 30 minutes of taking the first dose. Currently, only medication on my list of 'Medications allergic to.'"