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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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User Ratings

10
   
13%(5)
9
   
8%(3)
8
   
13%(5)
7
   
8%(3)
6
   
10%(4)
5
   
8%(3)
4
   
10%(4)
3
   
13%(5)
2
   
3%(1)
1
   
18%(7)

Primidone Rating Summary

5.4/10 Average Rating

40 Ratings with 40 User Reviews

What next?Compare all 9 medications used in the treatment of Benign Essential Tremor.

Reviews for Primidone to treat Benign Essential Tremor

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

   
8.0

U128 September 1, 2017

1 users found this comment helpful.

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"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

5 users found this comment helpful.

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"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

4 users found this comment helpful.

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"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

3 users found this comment helpful.

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"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

2 users found this comment helpful.

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"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

16 users found this comment helpful.

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"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

11 users found this comment helpful.

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"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

8 users found this comment helpful.

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"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

20 users found this comment helpful.

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"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!"

   
5.0

shake for me girl (taken for 10 years or more) March 9, 2017

12 users found this comment helpful.

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"Issues with tremors of the trapezious muscles ( bobble head). Dizziness, nausea within 30 minutes of taking first dose. Currently only medication on my list of "Medications allergic to"."

   
1.0

Roger K (taken for less than 1 month) February 27, 2017

7 users found this comment helpful.

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"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?"

   
1.0

Lo-D (taken for less than 1 month) January 28, 2017

22 users found this comment helpful.

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"I have what my doctor calls a mild case of benign essential tremors, but when I'm trying to practice or perform with my guitar, or do electronic work with small parts, its become more than annoying. Proprananol works, but as an asthmatic I have to avoid it or I'll wheeze. Doctor gave me a small dose of primadone, 50mg, and told me to cut some pills in half and just use 1/2 for a week or so first). I don't know if I'd get used to this stuff over time, but unless I'm willing to forget about musical performing while I wait, I'm going to have to stop. I find my coordination, speed, concentration, ability to remember song parts and lyrics severely hampered. It does reduce (but not elimate) the tremors, but what good is it if I can't do my work?"

   
2.0

rconstan (taken for less than 1 month) January 11, 2017

20 users found this comment helpful.

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"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. "

   
8.0

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

26 users found this comment helpful.

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"Tremors seem to be getting worse. I take 2 a day. Just turned 70. Have had tremors for many years. Maybe I should ask my doctor is there is something else for me to try."

   
3.0

Bif604 (taken for 5 to 10 years) December 8, 2016

10 users found this comment helpful.

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"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"

   
1.0

Ernest Rahm September 5, 2016

25 users found this comment helpful.

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"Have had essential temors for many years, now at age 69 they interfered with my quality of life. Could not hold anything steady and my beautiful penmanship was horrid! I fought the thought of taking a prescribed medicine since I was so lucky not to take any, even at my age, except Imitrex for migraines 2-3 times a month. I am taking 50mg 2x a day, and it has been working great, even the migraines has decreased. I am sleeping so soundly at night that my days are so much better. After 4 months on it, I have noticed no side effects, but a little of the tremor is returning, which my doctor told me could happen. Not ready to increase dose though."

   
9.0

69yrold August 11, 2016

48 users found this comment helpful.

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"It took me 2 months to adjust to primadone. I was in a cloud, not able to do my bookkeeping job, not much of a short term memory, but now after 6 months, I feel like my old self, just in need of an hour nap/day. My problem is I can only take half of a 50 mg, which is 25 mg. However, these pills do not come in a 25 mg. Smallest mg is 50. So I have to cut the pills in half. In doing so, the pill crumbles so I always lose half of it anyway. I asked the pharmacist if they could cut the pill in half but they said that is illegal for a pharmacy to do so. I wish it came in 25 mg and I wish I could find out if it will in the future. After investing all this time in adjusting to the 25 mg I would hate to start over with another drug."

   
8.0

Kathy Kane (taken for 6 months to 1 year) July 25, 2016

41 users found this comment helpful.

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"I woke up from surgery with tremors in my hands. It was diagnosed as Essential Tremors. I was an Computer Science teacher who could no longer control a mouse, write etc. I retired. Last Spring, while vacationing in Naples FL, I searched for and found a "Temporary" Primary Care Doctor. I prepared a listing of all my physicians, my conditions (including essential tremors), my prescriptions, and my over the counter medications. The doctor covered all the items on the list and asked me what I was taking for the Essential Tremors. The answer of nothing surprised him, He told me that I should take a low dose of Primidone. From his input, my Primary Care Doctor prescribed a 50 mg dose at night. Instant cure! I wrote my name the next morning!"

   
10

JOEYP July 12, 2016

48 users found this comment helpful.

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"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."

   
5.0

Shaky bones (taken for 1 to 6 months) June 21, 2016

14 users found this comment helpful.

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"After taking a half of a tiny pill of Primidone for 4 nights at bedtime I could not walk down the hall when I woke up. I was falling every where & was so nauseated & I had horrible Nightmares that woke me up screaming ! First thing Monday morning I called the neurologist that had prescribed it & the receptionist would not let me talk to her- Said she would call be back . she did not call so I called again later in the Day . Still would not let me talk to the Doctor ,but told me" she said never take it again ."My primary Care Dr sent me to see a specialist who checked my eyes & hearing & a lot of things with his special machines .He determined that it was the Primidone that was causing the problems. ( Of course I never took it again ) Bt"

   
1.0

Grandma241 May 19, 2016

39 users found this comment helpful.

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"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."

   
3.0

khan5 (taken for less than 1 month) May 3, 2016

25 users found this comment helpful.

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"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!"

   
4.0

JDEJ April 22, 2016

30 users found this comment helpful.

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"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.!"

Shaky bones April 17, 2016

18 users found this comment helpful.

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"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."

   
3.0

Tantor February 16, 2016

23 users found this comment helpful.

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