Primidone User Reviews & Ratings (Page 3)

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

For Benign Essential Tremor "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

For Benign Essential Tremor "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

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."

• jhk
• Taken for 6 months to 1 year
• April 18, 2018

For Benign Essential Tremor "Neck essential tremor for 8 yrs now. Am 65 and put on propranolol which made me soooo sleepy. Then Primidone. It helps 50% but still when I am in interactive situations mainly, really alert ,and busy I have them. At first I felt uncoordinated and dizzy. I shouldn't have been driving ( 2 fender benders ,perception and parking issues). On 100 mg. Primidone now and seeing Neuro. next week. I have changed in energy level and lifestyle but not all bad. Will not increase dosage though."

• ooje
• Taken for 1 to 6 months
• October 27, 2017

For Benign Essential Tremor "The Neuro Dr started the treatment of my Writers cramp with Propranolol. It didn't help and my heartbeat went faster instead. I was switched to Benzyhexol (Bz). After taking just 2x5mg I'd loose control of my legs. I am 48yrs I was often disoriented after taking Bz. My Writer Cramp condition remained same still. About 3mths ago, my drug was changed to Primidone 125mg twice a day. Worked great I could write legible once again. But after 3/4wks my writing deteriorated. Dose was increase to 250mg twice a day but still no improvement after 45 days of increasing dosage. I had to stop because I was having problem ejaculating. After 10 days, I resumed use yesterday 250mg only @ night. In 24hrs noticed great improvements. My plan is to take 250mg/wk. I'll update in a month."

• Shake...
• 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 Propranalol which helps minimally but I think helps more when I am nervous and have to 'appear' in public!"

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

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

• Butte...
• 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 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 wean 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 ."

• Jazzy
• Taken for 1 to 2 years
• June 17, 2018

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

• Willo...
• 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 inner ear. Very spacey all day and dizzy. I stopped it for a few days, then tried 1/2 of the 50mg tablet. Then I experienced an all night, watery diarrhea requiring several change 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 50mg Primidone was effective for controlling my tremor. At half the dose it did not seem to improve much. Sad I cannot take it."

• dollm...
• 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 80mg & 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 50mg 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 same symptoms I'm done."

• PKB
• September 21, 2019

For Benign Essential Tremor "65 yo female. Dad had essential tremors 4 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 yr. My tremors are still mild & began about 18 months ago. The area most affected is my dominant hand. Handwriting is difficult & holding a full cup or glass is also a problem. I have been taking Primidone for 9 mos. At a recent visit with my neurologist, I told him I didn’t believe Primidone was relieving my symptoms. Dose is 100 mg at nite which was an increase from 50 mg at nite. I also take 600 mg of Lithium ER, which can cause tremors. They are worse when I am in a stressful environment. I take .25-.50 Xanax, which helps. We have decided to D/C Primidone 2 re-evaluate Lithium as the root cause. However stopping the Lithium is not an option. I haven’t experienced any side effects. Follow up in 6 mos Other meds haven’t helped. May consider DBS if they get much worse."

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

For Benign Essential Tremor "I've recently been diagnosed with Essential tremor so started on primidone (50 mg 2X day) and inderol (20 mg 2X 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 a "stiffness". Looking for a second opinion at this time."

• Chrissy
• Taken for 5 to 10 years
• June 26, 2023

Mysoline (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."

• Jean
• 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 lightbulb 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 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."

• Georgie
• Taken for 1 to 6 months
• October 5, 2023

Mysoline (primidone) "I’ve been on Mysoline 50mg 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 60’s which has become more prominent- now in my early 70’s. I slowly increased the dosage & have had initially no side effects. Certainly improved my sleeping as I was a very bad insomniac & 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 regards 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."

• Jose
• Taken for 1 to 6 months
• March 21, 2018

For Benign Essential Tremor "Started primodone in September 2017, then I was put on 2 pills Jan 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 time. It has been almost 2 months since stopped and I still don't know if this was primodone that caused it."

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

Mysoline (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!"

• Shakey
• 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 propanolol. 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."

• Works...
• 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."

• cleme...
• 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."

• 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 50's 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 to my clumsiness or not, I am not sure. It has helped to control my seizures since my last one in 1975."

• Hope
• 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 (125mg) 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 have started to slowly wean myself off this drug. Phoned and left a message for my Neurologist but 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."

• 57 yo...
• 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 maybe 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?"

• Bill...
• 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 100mg - 2 times a day. This is the only Essential Tremor drug I'm taking at this time. I've been on Inderal, Topiramate, Gabipentin, Carbodopa/Levadopa and combinations. Recently Phenol injections into my neck muscles did more harm then 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 ?"