Primidone User Reviews & Ratings (Page 3)

• Nam...
• Taken for 10 years or more
• October 21, 2017

For Benign Essential Tremor "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."

• Geo...
• Taken for 1 to 6 months
• October 5, 2023

Primidone "I’ve been on Mysoline 50 mg, 1 daily, for about 2-3 months, started July 2023. My diagnosis with the tremor, which I inherited from my dear dad, started in my early 60s, which has become more prominent-now in my early 70s. I slowly increased the dosage and have had initially no side effects. Certainly improved my sleeping as I was a very bad insomniac, and my tremor is slightly improved. My only concern is my taste buds have changed dramatically. Water, food, alcohol all taste a bit ‘slimy’. Has anyone noticed this with regard to side effects? But I have also been on another new medication, but again no mention of a change with taste bud in side effects. Otherwise, very happy with this medication. Cheers."

• Sas...
• February 25, 2018

For Benign Essential Tremor "I'm getting ready to take 50 mg primidone tonight before I go to bed. I've had hand tremors ever since I broke my left arm in three places in third 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, I'm 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."

• 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."

• 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!"

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

For Benign Essential Tremor "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

For Benign Essential Tremor "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

For Benign Essential Tremor "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

For Benign Essential Tremor "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

For Benign Essential Tremor "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

For Benign Essential Tremor "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

For Benign Essential Tremor "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."

• 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."

• 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."

• Chr...
• Taken for 5 to 10 years
• June 26, 2023

Primidone "I take Mysoline because I have been diagnosed with essential tremors. It helps a lot with the tremors, but I still struggle with having them, but they aren't nearly as bad. I'm not dropping things as often. The medication took some getting used to. It made me really tired at first. I take two in the morning and one at bedtime. Eventually, my body got used to it, so it doesn't make me sleepy anymore."

• Anonymous
• October 24, 2009

For Seizures "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."

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

For Benign Essential Tremor "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

For Benign Essential Tremor "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."

• Jim...
• Taken for 10 years or more
• June 6, 2022

Primidone for Epilepsy "When the doctors finally prescribed name brand Mysoline, my seizures stopped and I got my life back. After years of going round and round with the many different group insurance companies of my employers and getting the drug approved, things worked wonderfully. Now that I am retired and on Medicare, I am shocked at what I pay for this drug alone! Annually, it costs me, after my insurance pays, $13,064.92 out of pocket. When I was first getting on Medicare, I applied for both the Patient Assistant Program (PAP) through Bausch & Lomb and had my neurologist submit a request to have name brand Mysoline approved as a formulary drug so my Medicare prescription plan would assist in paying. They approved and that immediately dropped me from the Bausch & Lomb PAP. I have no idea how anyone on Social Security is supposed to pay $13,064.92 annually????? The cost keeps going up, up, up!"

• PKB...
• September 21, 2019

For Benign Essential Tremor "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

For Benign Essential Tremor "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

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."

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

For Benign Essential Tremor "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."

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

For Seizures "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?"