Primidone and Dizziness: What Users Say

• CMy...
• October 3, 2014

For Benign Essential Tremor "For Essential Tremor. Took me a long time to get used to side effects. Felt scared. Dizzy. Headache. Nausea. Increased heart rate. Anxious. Barely standing because I started too high at 50mg. Need to start very low for me. I finally got better. No shakes. Very pleased. The Neurologist's office kept rescheduling me, and I ran out. This second time starting was even more AWFUL. Flu-like, plus feeling kind of like I was in a total mental fog. Odd. Be cautious is my opinion. I was in misery for 3 days. Unable to function. Finally getting better. Day 5. Should have taken at bedtime. Never knew."

• Anonymous
• December 9, 2009

For Benign Essential Tremor "I was diagnosed with ET 6 weeks ago. I was prescribed Primidone. To date, I still am having serious side effects. My tremors are continual, even to the point where my left arm feels 'dead'. Generally, I feel drained, dizzy, and sick to my stomach. My voice is halting, with shaky patterns, and is more affected when I am tired. I find it very difficult to take this medicine and will be calling my doctor to discuss any other options."

• the...
• Taken for less than 1 month
• May 10, 2014

For Benign Essential Tremor "I have had Essential Tremor for several years. I have been taking propranolol and clonazepam for the last several years but have seen a return of tremor lately. My doctor added primidone in the last month. I have been having great difficulty adjusting to medicines though. I feel like I'm spinning most of the time, seems to cause an increase in shakiness as the medicine begins to wear off (at least that's my opinion), and has caused an inability to ejaculate. I am currently working on increasing my dosage amounts. I started at 12.5mg with an intended dose of 50mg nightly as a goal."

• Sus...
• December 10, 2015

For Benign Essential Tremor "I have been taking 250 mg of Primidone for the last 17 years for Benign Essential Tremor. As far as I know, I have no side effects. When I first began the medication, I started out with a smaller dose and worked up to 250 mg. I found that I could not take the meds during the day because of sleepiness, dizziness, etc., so my doctor suggested that I take it at night. I have been taking it at bedtime since, and it helps to put me to sleep."

• NWa...
• December 14, 2009

For Benign Essential Tremor "I have epilepsy and had it controlled for several years with other medications. Recently, I was diagnosed with Essential Tremor, and the doctor prescribed Primidone. On the second day of use, I had a seizure. As I continued usage and increased dosage as directed, I started losing muscle control in my legs. I had periods where I thought I was losing my mind. I was unable to speak clearly as it felt like my tongue was swollen, but it was not. It got to the point where I could not stand up in the shower without leaning against the walls. My wife said, 'Get off that medicine!' I could not reach my doctor, so I decreased the dosage to zero. I take a lot of different medications for a number of different medical problems, I think my brain had had it."

• 23H...
• May 12, 2017

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 50 mg 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."

• Anonymous
• Taken for less than 1 month
• September 12, 2019

For Benign Essential Tremor "I am an 86-year-old male in excellent health, except for moderate essential tremors in my hands and neck. For the first time, I took 50 mg of Primidone after breakfast at 8:00 AM. After 1 1/2 hours, I got so dizzy and nauseated that I could not walk. I also had periods of double vision. I spent the rest of the day and night in bed. After 24 hours, the effect is about 80% gone. No more Primidone! I'd rather shake than stagger."

• Har...
• November 23, 2017

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

• boo...
• June 17, 2019

For Benign Essential Tremor "I am 69 years old and have genetic essential tremor. My parents both had it, and my sibling has it now. So far, my kids do not have symptoms. I have been on Primidone for 25 years. I initially started with a low dose of 62.5 (a quarter of a 250 mg pill), then slowly over the years increased the dosage until I maxed out at 500 per day (one 250 mg in the am and one 250 mg in the pm). It really helped for many years, but at the 500 mg level, after 25 years, it no longer works at all (which I am told is normal), so I am weaning myself off the drug under my neurologist's care. I was curious to see some people who experience vertigo. I have had that for many years but was told it was another condition-benign vertigo."

• Tan...
• February 16, 2016

For Benign Essential Tremor "I started out with Primidone at 50 mg 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 50 mg 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."

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

For Benign Essential Tremor "Neck essential tremor for 8 years now. Am 65 and put on propranolol, which made me so 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."

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

For Benign Essential Tremor "Neck essential tremor for 8 years now. Am 65 and put on propranolol, which made me so 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."

• 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."

• 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."

• Rog...
• Taken for less than 1 month
• February 27, 2017

For Benign Essential Tremor "Issues with tremors of the trapezius muscles (bobblehead). Dizziness, nausea within 30 minutes of taking the first dose. Currently, only medication on my list of 'Medications allergic to.'"