Primidone for Benign Essential Tremor User Reviews (Page 2)

• Shaky...
• Taken for 6 months to 1 year
• January 6, 2017

"After taking 750mg/day for about 8 months, it felt great not to have my tremor as much. But in the last 3 months I have been getting stiffer and stiffer as the days went on. I have one frozen shoulder confirmed, but my back, neck and other joints were aching too. My GP looked up primidone in his book and said joint stiffness is a side effect. So I have no choice but to reduce my dosage. A week after reducing my tremor is much worse, so I don't know what to do now as I have exhausted all other medication. "

• NWano
• December 14, 2009

"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! Could not reach my doctor so I decreased dosage to zero. I take a lot of different medications for number of different medical problems, I think my brain had had it. "

• Upset
• Taken for 1 to 6 months
• January 17, 2021

"It affects all my other meds & thyroid med affects it. I live feeling like a zombie. It has decreased blood levels of antidepressant med so much that the results is primidone causes major depression. I never do anything I need to do in order to function my normal routine. 1 month 50mg @ night. This week upped to 100mg. Last night I dropped back to 50mg. I’m going to wean off that. Age 65+. Propranolol caused 2/3 hair loss. I’m done. Rather have the tremors."

• Geno
• Taken for 5 to 10 years
• March 15, 2018

"I started primidone several years ago at 50mg at night for tremors worked great calmed the tremors down. But I have had to increase it to 300mg a day. I can feed myself, drink from a glass, brush my teeth, shave etc. I personally can't live without it."

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

"I’ve 39 whose had tremors most of my life. Went to see a neurologist and he suggested primidone. I started taking 50 mg primidone and I woke up the next day disorientated, room was spinning. I felt drunk, high, and vomiting the entire day. Doctor told me to take 1/2 the following night and rest of 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."

• Lo-D
• Taken for less than 1 month
• January 28, 2017

"I am an 86 year old female and have an essential tremor. I had Deep brain stimulation (DBS) surgery in July 2008. My battery isn't working as well as it did in the beginning. I have tried drug after drug to help the tremor. I have been taking tab Primidone 1/2 of 50 mg twice a day for a week. My vision is affected, my legs are like noodles, sooooooooooo, I am going to try 1/2 at night or maybe quit all together. I still drive taking care of business but with the vision problem I don't drive. I took care of my husband with Alzheimer's for 12 years 2003 to 2015, I have written two books documenting the progression of the disease. I am active but the vision stops me from living my life, What should I do?"

• Jadec...
• April 15, 2017

"I'm a 26 year old female and my tremor started when I was 20. Back and forth to the doctors for 4 years and told it was due to 'anxiety.' 2 years ago they sent me to a neurologist who diagnosed me with a benign essential tremor which worsens when physical. I've been on Primidone for approximately 6 months now and have increased the dosage from 50 mg now a month later 300mg. Tremor comes and goes still but not as bad. My next problem now is a rare side effect of Primidone is a skin rash, my doctors are unable to confirm whether this is due to the medication or whether it is Rosacea, does anyone else have this problem? I have now been advised to decrease my dosage! I cannot win."

• JDEJ
• April 22, 2016

"Beta blockers don't work, tried primidone recently. Started at 150 mg, now up to 250 mg, 50% improvement. I'm not sure if I want to take this long term for 50% improvement. I have gotten by most of the time just dealing with my tremors. But I'm so tired of having them!"

• hooplah
• July 12, 2018

"26 year old male I was on 50mg a night for my tremor and had tried several other medications before. (Some for high blood pressure, too). Taking this while taking Propranolol occasionally for instances where I knew I'd be nervous. Primidone sedated me a bit at night and helped with my insomnia. Initially, 50mg was enough to carry me through the day. After a year, it started to wear off earlier during the day. My doctor suggested taking a pill in the morning, too...but that made me incredibly drowsy/foggy. We decided to switch to 100mg at night instead....yikes. I was coincidentally dealing with some major family events and found myself emotionally derailed. My family 'intervened' out of concern my medication was making me unstable...so I quickly jumped to the doctor's office, had an MRI, and switched to Gabapentin. I also became dependent on this drug for sleep and have been struggling with insomnia since. The withdrawal symptoms, even while weaning off, were not fun."

• 23Hea...
• May 12, 2017

"I have had a mild case of benign essential tremor for almost 12 years. My primary care doctor has always associated my shaking with anxiety or hormones, however my neurologist diagnosed it as benign essential tremor. I have been taking Primidone (only 50mg twice a day) for a month now and it seems to have decreased the shaking a bit. However, it makes me extremely tired and I sometimes have an odd dizzy feeling the first hour or so after taking it. I am unsure if it will go away completely, but it definitely has helped so I will continue to take this medication to see if the side effects eventually go away."

• JaPe
• Taken for 1 to 2 years
• January 11, 2021

"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."

• khan
• Taken for less than 1 month
• May 3, 2016

"I am 31 male. Just figured out, I have ET. I could not take propanolol due to asthma. Doctor prescribed 1/4 of 250 mg primidone (mysoline) at bed time at night. I had horrible side effects next morning. Head spinning sensation plus nauseated all day long. Hands felt numb. Tremor was controlled though by some amount. But too much side effect to continue. Doctor changed it to topiramate. Today is first day, i am taking topiramate."

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

"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 20's the tremor starting 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 50mg 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 80mg ER."

• shake...
• Taken for 10 years or more
• March 9, 2017

"Got Benign Essential Tremor 42 yrs ago. I was 13. Been on primidone 50 mg two in a.m close to 20 years. I just found out it is a barbituate. No wonder I'm sleepy all the time in the morning. Now when I look back I had been vomiting in the beginning. I was even hospitalized for intractable vomiting. Tomorrow I have an abdominal ultrasound because I constantly have GERD and have vomited a lot recently. Meds forever for GERD all sorts of kinds. I have always let an internal medicine doctor prescribe the med. I am going to see a specialist asap. I gave primidone a rating of five because my tremor has never fully stopped it just isn't as noticeable to the public. Occasionally someone will say I am nervous. Then I tell them I have benign essential tremor. Sick of it!"

• Anonymous
• Taken for less than 1 month
• September 12, 2019

"I am an 86 year old male in excellent health except for moderate essential tremors in my hands and neck. For the first time I took 50 mg of Primidone after breakfast at 8:00 AM. after 1 1/2 hours got so dizzy and nauseated that I could not walk. I also had periods of double vision. I spent the rest of the day and night in bed. After 24 hours, the effect is about 80% gone. No more Primidone! I'd rather shake than stagger."

• anon
• Taken for 10 years or more
• September 17, 2019

"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, 2/day. Now I have 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% drugs made out 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"

• Ernest...
• September 5, 2016

"I have had ET's for several years and taken various medications with varying degrees of success, I have recently been put on 50mg 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"

• Harry...
• November 23, 2017

"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 was preferable to shakes. Vertigo and itch subsided after 4 weeks. Shakes somewhat better."

• boomer
• June 17, 2019

"I am 69 years old and have genetic essential tremor. My parents both had it and my sibling has it now. So far my kids do not have symptoms. I have been on Primidone for 25 years. I initially started with a low dose of 62.5 (a quarter of a 250mg pill) then slowly over the years increased the dosage until I maxed out at 500 per day (one 250 mg in am and one 250 mg in pm). It really helped for many years but at the 500mg level after 25 years it no longer works at all (which I am told is normal) so I am weaning myself off the drug under my neurologist's care. I was curious to see some people who experience vertigo. I have had that for many years but was told it was another condition-benign vertigo-"

• Tantor
• February 16, 2016

"I started out with Primidone at 50mg 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 50mg 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."

• Sassy...
• February 25, 2018

"I'm getting ready to take 50mg primodone tonight before I go to bed. I've had hand tremors ever since I broke my left arm in 3 places in 3rd grade. I was bullied all through school. Pretty much my whole life. Several years ago I went to the doctor he put me on Inderal that worked for about eight years until I started having stomach problems and the tremors just kept coming back so I quit. Happy that this stuff works really getting tired of being shaky all the time and I don't get out of the house because of the way people look at you they can be very mean"

• Bones...
• Taken for 1 to 6 months
• June 12, 2019

"50 mg bid dosage. My age 76. Had every listed side effect including eom pain, panic attack , mania, suicidal thoughts and actions, muscle cramps, irritability, depression , diplopia,,excitement. Took this for 7 months did not realize side effects until 2 weeks ago. It should not be given to the elderly."

• Shaky...
• Taken for 6 months to 1 year
• March 31, 2017

"Hi Jen.1 I was on primidone @750mg/day. But after a few months I got pain in my arms around the bicep. 8 months later this has turned into two frozen shoulders and other joint stiffness. So please be aware. I have been off primidone for 2 months now and I am still struggling to work around the pain in my shoulder and other joints."

• Shaky...
• April 17, 2016

"I've had ET for 20 years now and been on propranolol 160mg/day (heartbeat 50bpm). I has recently started to get worse as I approach 50 and propranolol on its own wasn't cutting it. Doc prescribed gabapentin, but taking 12 x 300mg tablets everyday was making a difference, but didn't want to take that many pills. So doc prescribed toprimate (awful stuff), the sickness and pins and needles in my feet were just too much. So doc tried clonzepam, it took me a year to get up to full dosage of 2 tablets per day, but even that didn't work that well. So I asked doc to refer me to a specialist. The specialist said take primidone, which is what I am on now @ 250mg/day. I have to get to 750mg/day by August.!"

• Nammy
• Taken for 10 years or more
• October 21, 2017

"I had very early onset of Essential Tremors. Can remember it as far back as early grade school. It is a progressive disorder and I am now 77 - need I say more. Was about 30 before they put me on Inderal. At about 50 something when I went to a specialist that put me on Primidone. Had to start slow. Have worked it up to the max amount I can take due to my low weight. It does help, but wish I could take more."