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User Reviews for Primidone

Also known as: Mysoline

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

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Seizures
8.7
   
11 reviews 50 medications
Benign Essential Tremor
5.6
   
56 reviews 3 medications
Summary of Primidone reviews 6.3 67 reviews

Reviews for Primidone

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For Benign Essential Tremor: "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."

   
6.0

hooplah July 12, 2018

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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."

   
8.0

Jazzy (taken for 1 to 2 years) June 17, 2018

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For Benign Essential Tremor: "I was diagnosed with ET (essential tremor) about 12 years ago and first started on primidone at 50 mg nightly. As the disease progressed my doctor increased my dosage until I was three 250 mg tabs a day. This was the max allowed. I had to stop working due to not being able to write and I used lift gear to eat. The tremors continued to worsen. Recently I had a DBS (Deep brain stimulation) operation. I no longer am using primidone."

   
6.0

Dan (taken for 10 years or more) June 12, 2018

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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!"

   
2.0

Shakeylell (taken for 1 to 6 months) June 9, 2018

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For Benign Essential Tremor: "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."

   
1.0

Participant (taken for 1 to 6 months) April 25, 2018

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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."

   
5.0

jhk (taken for 6 months to 1 year) April 18, 2018

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For Benign Essential Tremor: "Horrible!!! I am in the process of getting tested for multiple sclerosis. I took it for the first time last night, 100 mg as prescribed, and woke up feeling so drunk and I don't drink! Garbage!!!"

J (taken for less than 1 month) April 6, 2018

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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."

Jose (taken for 1 to 6 months) March 21, 2018

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For Benign Essential Tremor: "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."

   
10

Geno (taken for 5 to 10 years) March 15, 2018

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For Benign Essential Tremor: "I’m a 71 year old male and developed tremors several years ago. It progressed so that I couldn’t sign my name and my head was wagging. About 18 months ago, my doctor had me try Primidone 50mg at night. I experienced immediate improvement so that I could once again write cursive. Not only did the tremors greatly improve, but the chronic pain in my thrice-broken arm was reduced so I could manage it with occasional Acetaminophen. Previously, I had to take opiates at least once a week to knock back the pain and manage it in between with Acetaminophen. Unfortunately, I started having very vivid, very bad dreams. I started praying about the dreams before going to sleep. Now I have very vivid, very good dreams on Primidone. Now, minimal shakes, minimal aches and pains, and good dreams."

   
8.0

Duncan (taken for 1 to 2 years) March 6, 2018

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For Benign Essential Tremor: "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"

Sassysue February 25, 2018

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

   
5.0

Harry M November 23, 2017

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For Benign Essential Tremor: "At age 66, increasingly worrisome central system tremors. Embarrassing to dine in restaurants -- at salad bars a staffer would 'follow' me around putting things back in their proper buckets. My neurologist started me on 1/4 tablet at night, and the next morning, my life had changed. I could type, use the computer mouse and other tasks effortlessly. Over 6 months, dosage was increased and now levelled off at 2 per day. Absolutely NO side effects noted, in fact, quite the opposite."

Anonymous (taken for 6 months to 1 year) November 3, 2017

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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."

   
7.0

ooje (taken for 1 to 6 months) October 27, 2017

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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."

   
9.0

Nammy (taken for 10 years or more) October 21, 2017

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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 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."

   
4.0

Mindfulness19 (taken for 1 to 6 months) October 12, 2017

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For Benign Essential Tremor: "I have sores in my mouth and I'm frequently hoarse, but it does help control the tremors"

   
8.0

U128 September 1, 2017

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For Benign Essential Tremor: "Works like a charm! A little sedating when first starting but it goes away. I can take pictures again!"

   
10

Pluferd (taken for less than 1 month) August 27, 2017

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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."

   
6.0

LakeShore62 (taken for less than 1 month) August 12, 2017

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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."

dollmaker (taken for 1 to 6 months) August 3, 2017

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For Benign Essential Tremor: "Long term use of this drug caused really bad side effects in my husband. It caused his body to quit producing a natural sodium."

   
1.0

missysmom (taken for 1 to 2 years) June 10, 2017

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For Benign Essential Tremor: "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."

   
6.0

23Heather May 12, 2017

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For Benign Essential Tremor: "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."

   
10

Jadeccole April 15, 2017

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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."

   
5.0

Shaky bones (taken for 6 months to 1 year) March 31, 2017

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For Benign Essential Tremor: "I have suffered for years with terrible tremors. Started the medication slowly and now on 750 daily my shakes are still there but not as noticeable. My hands are not to bad, but the shaking of my head is awful nodding "yes". My doctor is debating putting me on a beta blocker, apparently that helps I will take anything at this point. No adverse effects from the Medication. I never realised how many people are suffering from essential tremors it's awful that people assuming you are a nervous person, this affects you in your work and your social life which I avoid completely, apparently surgery will be available in a few years to completely cure it, so the road is definitely brighter Good luck I hope it works for you."

   
7.0

Jen.1 March 29, 2017

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