Primidone for Benign Essential Tremor User Reviews (Page 3)

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

"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

"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!"

• Jaz...
• Taken for 1 to 2 years
• June 17, 2018

"Helps me a lot. I only take half of 50 mg per night. As with meds for restless legs, less is best for me. Too much of either med and then forget to take, and it's awful! I've forgotten on the lower dose, and it's not that bad."

• Sha...
• April 17, 2016

"I've had ET for 20 years now and been on propranolol 160 mg/day (heartbeat 50 bpm). It has recently started to get worse as I approach 50, and propranolol on its own wasn't cutting it. The doctor prescribed gabapentin, but taking 12 x 300 mg tablets every day was making a difference, but I didn't want to take that many pills. So the doctor prescribed topiramate (awful stuff), the sickness and pins and needles in my feet were just too much. So the doctor tried clonazepam, 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 the doctor to refer me to a specialist. The specialist said to take primidone, which is what I am on now at 250 mg/day. I have to get to 750 mg/day by August."

• Wil...
• Taken for less than 1 month
• March 19, 2021

"I tried and tried to take this for my tremor. At 50 mg, first dose at bedtime, I awoke the next morning with severe dizziness similar to vertigo from my inner ear. Very spacey all day and dizzy. I stopped it for a few days, then tried 1/2 of the 50 mg tablet. Then I experienced an all-night, watery diarrhea requiring several changes of clothing and bed covers. Kaopectate stopped the severe diarrhea. I was not sure if that reaction was Primidone or Cymbalta, which I had been taking for 60 days but recently increased. I stopped all meds for a few days, added back Cymbalta with no problems. Then I took 1/2 tablet of Primidone. No longer severe dizziness but very intense diarrhea again. I am through trying Primidone. The first dose of 50 mg Primidone was effective for controlling my tremor. At half the dose, it did not seem to improve much. Sad I cannot take it."

• dol...
• Taken for 1 to 6 months
• August 3, 2017

"I have had tremors for years using Inderal, and it worked. When it was replaced with Propranolol, not as good. Up from 10 mg to 80 mg, and so-so. Tried Primidone before with bad results and was not told to continue Propranolol, bad results. Stopped. New doctor who advised using both, but starting with half 50 mg Primidone at night, building up to a whole one. Slight improvement. Now advised to build up to two daily. Had previously had a frozen left shoulder, was put to sleep and manually broken loose. Luckily, no side effects, but lots of physical therapy before and after. Last few weeks, shoulder is trying to freeze again, right shoulder, knee, ankle, and neck hurting. After reading comments with the same symptoms, I'm done."

• Lak...
• Taken for less than 1 month
• August 12, 2017

"I've recently been diagnosed with essential tremor, so I started on primidone (50 mg 2X a day) and Inderal (20 mg 2X a day) for 2 1/2 weeks. Tremors initially subsided, but now they are back today, as well as struggling with gait again. My jaw feels like it wants to 'lock' or have a 'stiffness'. Looking for a second opinion at this time."

• Jea...
• Taken for 1 to 2 years
• May 21, 2023

"Was on primidone for my essential tremors. I was also on Zoloft. It controlled my tremors just great. However, watching an ad advertising a new tremor med if you took depression meds made a light bulb go off in my head. Zoloft was causing most of my shaking, including body jerks at night. I gradually got off Zoloft on my own and had no tremors. My doctor said this was great, and since I was on such a low dosage, to just quit primidone. I still have control of my hands, but now my ankles and feet are swollen. Guess what, that's a side effect of quitting primidone. I wasn't advised of this, so I am now dealing with swelling. It also affects your kidney function as well as sugar levels. Primidone is not advisable if you can find another med. As I said, if you're on an antidepressant, check the side effects. Shaking and tremors are mentioned, so make an educated determination of what is safe for you."

• Sha...
• Taken for 1 to 6 months
• June 21, 2016

"Further to my post in April. I am now on 750 mg/day of primidone. No side effects other than my mouth is numb, and ejaculation is difficult. The tremor has reduced a bit, but I still have to write with my left instead of right. Seeing the consultant in August, but I fear that he may recommend DBS again."

• But...
• February 2, 2020

"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."

• 57 ...
• Taken for 1 to 2 years
• October 11, 2021

"I started on primidone 3 times daily, working up to 50 mg each dose. My tremors improved greatly, but still could be better. I have just started increasing slowly, as prescribed, and am now taking 100 mg 3 times daily. Initially, going from 1 3/4 pills to 2 pills, my tremors seem to have gotten worse. I am hoping this is short-term. If not, my 'ideal' dosage may be 1 3/4 pills, even though that means cutting pills. Does anyone else find it ironic that a pill to treat tremors doesn't have multiple dosages, resulting in people with tremors trying to cut microscopic pills?"

• Jos...
• Taken for 1 to 6 months
• March 21, 2018

"Started primidone in September 2017, then I was put on 2 pills in January 2018, and I got a rash on my face, all over skin burning, rash spots on the bottom of my feet that were red as fire, and my head was itching all the time. It has been almost 2 months since I stopped, and I still don't know if this was primidone that caused it."

• PKB...
• September 21, 2019

"65 yo female. Dad had essential tremors for the last 10 years of his life. By the time he died, he could barely feed himself or hold a cup. His tremors developed gradually in the beginning but worsened quickly his last year. My tremors are still mild and began about 18 months ago. The area most affected is my dominant hand. Handwriting is difficult, and holding a full cup or glass is also a problem. I have been taking Primidone for 9 months. At a recent visit with my neurologist, I told him I didn’t believe Primidone was relieving my symptoms. Dose is 100 mg at night, which was an increase from 50 mg at night. I also take 600 mg of Lithium ER, which can cause tremors. They are worse when I am in a stressful environment. I take 0.25-0.50 Xanax, which helps. We have decided to discontinue Primidone to reevaluate Lithium as the root cause. However, stopping the Lithium is not an option. I haven’t experienced any side effects. Follow up in 6 months. Other meds haven’t helped. May consider DBS if they get much worse."

• Wor...
• Taken for 1 to 6 months
• October 1, 2023

"I take Primidone 50 mg daily for essential tremor. I have been on it for about 6 months with no side effects or other problems. I notice that if I go for a couple of days without the medication, the tremors return."

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

"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."

• Hop...
• Taken for less than 1 month
• October 13, 2021

"I was prescribed this drug nearly 4 weeks ago by my neurologist as I have essential tremor. I had to start at 1/4 tablet x 2 a day and then increased to 1/2 tablet (125 mg) x 2 a day. I take other meds for depression and glaucoma (which he knows about). The first night was awful - nightmares, woke up feeling drowsy (a side effect). It became so bad for me that I was falling over at night, nightmares, and feeling foggy/drowsy/nauseous/more depressed/vertigo, and my eyes not being able to focus properly during the day, and my work suffered. My tremors improved, but I can't deal with the side effects, so I have started to slowly wean myself off this drug. I phoned and left a message for my neurologist, but he hasn't returned my call. My tremors are returning, but I still have some side effects. Perhaps if I wasn't working and persevered, the side effects would go with more time."

• Kee...
• Taken for less than 1 month
• May 13, 2022

"I am on my second week of primidone for voice and jaw tremor. It has helped a lot. Taking 25 mg, which I will up to 50 mg in a week. Few side effects. I've heard it doesn’t work well after a year, which saddens me. I am 82."

• Way...
• Taken for 5 to 10 years
• July 21, 2021

"I'm 74 and began to experience right-hand tremor 5-6 years ago. It's worst when trying to write (cannot write legibly nowadays). I ignored it at first because the tremor was mild, plus I didn't think anything could be done. Because it slowly worsened, I saw my state's 'Expert on Parkinson's and Other Types of Tremors' (that's what my primary care physician told me). Anyway, Dr. Expert said it's essential, not Parkinson's. I began primidone at 50 mg at night. It immediately helped. After about a year, the tremor slowly worsened again, so my neurologist (not Dr. Expert) upped the primidone to 75 mg at night. Slight improvement, but after another year with a gradual retreat to more frequent episodes and worsening tremor, the neurologist suggested going up to 100 mg at night. That was 6 weeks ago, and the tremor hasn't lessened. I've experienced no side effects."

• Gre...
• Taken for 1 to 6 months
• July 24, 2024

"I had head and arm tremors. I started on Primidone. I am 59. I no longer shake, both head and arm tremors are gone. I take one 250 mg tablet a day, made up of half a tablet in the morning, a quarter of a tablet in the afternoon, and the other quarter in the evening. No side effects at all, brilliant."

• Gai...
• July 25, 2021

"My father and mother had shaking hands. I am 66 and had mild tremors in my hands since my 20s. I went to a neurologist back then who put me on Inderal, but I didn’t take it due to having side effects of drowsiness. A couple of years ago, my tremors got worse. I went back to a neurologist who prescribed Primidone due to having a slow heart rate. After 3 days of 50 mg in the morning, I have seen significant improvement. I am still dosing and taking one in the morning and one in the evening. I’m very happy that it’s working."

• Mac...
• Taken for 5 to 10 years
• February 27, 2022

"75-year-old Vietnam veteran, exposed to agent orange. I started with mild essential tremors in my late 20s, which later became peripheral neuropathy. I have little feeling in my lower legs and am no longer able to write. I take primidone 250 mg 4 times daily... It helps somewhat, but I guess that's better than not at all. My neurologist has suggested trying an electrical brain implant. I'm on the fence."

• Bre...
• Taken for 5 to 10 years
• May 20, 2023

"I have essential tremors/benign tremors. I am 56 years old and have had this since roughly 2010. My hands shake uncontrollably, and my neurologist prescribed me Mysoline/primidone 50mg. It works awesome, but the dosage has to be increased yearly as you become used to it. I take 300mg every morning, I’m supposed to take it at night, but it wears off when I am sleeping and is useless. I don’t feel tired. I have no noticeable symptoms of any side effects except the loss of appetite and weight, and it works excellently, and no thanks to benzos. I take exactly as directed, and I can function well now, but with an addiction tradeoff."

• Sus...
• Taken for 1 to 6 months
• May 20, 2023

"I have had essential tremors since I was a kid. When I first saw a neurologist due to my weight, there was no medication they were willing to put me on. I was advised to take lorazepam when it got really bad. This carried me through until I was in my early 50s. Now the tremors are getting worse and affecting my daily life. I have trouble writing, holding glasses, and using a mouse, and I’m really tired of everybody asking me why I’m so nervous. The final straw was when my granddaughter asked me why I shake all the time. So back to the neurologist I went. Unfortunately, I have asthma, so he felt primidone would be my best bet. I started off at 25 mg for about two weeks with little to no changes. I have recently gone up to 75 mg and finally seen some improvements. I can actually work the mouse and no longer spill stuff when I try to drink or eat. I still have issues writing and still noticeable tremors. I will continue to up the dose as the doctor advises. So far, no side effects."

• Anonymous
• July 13, 2009

Primidone "I found Mysoline effective for my essential tremor, but the side effects of tiredness, lack of energy, plus reduced sexual function (difficulty in ejaculating) is quite frustrating."

• han...
• Taken for 10 years or more
• November 27, 2013

"I have been on primidone for 10 years. I'm 34. I take 250 mg twice a day. It no longer works. If I increase the dose anymore, I'll be a zombie. I'm about to start gabapentin, time will tell."