Phenobarbital for Seizures User Reviews
Brand names: Sezaby
Phenobarbital has an average rating of 9.2 out of 10 from a total of 25 reviews for the treatment of Seizures. 92% of reviewers reported a positive experience, while 4% reported a negative experience.
Reviews for Phenobarbital
- Bon...
- Taken for 10 years or more
- February 2, 2020
"Started taking in 1973, now I’m 66 years old. Yes, we all hear this is an old drug. I am also on 2 other seizure meds. Completely under control! No issue with phenobarbital! Tried to wean off one time in my life, and that was a big mistake. So, give me the phenobarbital! Take my dose at night. If you are on it, stay on it!"
- vle...
- Taken for 10 years or more
- November 2, 2016
"I have been taking phenobarbital since the 1980s. I tried many other meds first, and the side effects were terrible. Finally, my neurosurgeon decided to try phenobarbital. It made me very drowsy at first. I take it at bedtime. It has worked for me for decades. Every time I see a doctor, I get the same old 'that's an old drug. We should change it.' NO THANK YOU. The insurance company wants me to try 'step therapy.' They don't know what they are doing. You can't just switch these meds. You have to wean off. I pay full price. Thank goodness it doesn't break the bank. Great medication, even if it is old."
Frequently asked questions
- Tra...
- January 26, 2018
"I have been on phenobarbital for 35 years as well. Worked very well. Doctors kept saying the drug is hard on the body and I should change it. So one day I listened and started taking lamotrigine. It was the worst move ever in my life. I had issues the entire time on them, and seizures got worse. I finally went back to phenobarbital after a long, very rough year and have not been the same since. If it works, don't change it."
- Mic...
- April 1, 2019
"I have had a seizure disorder since the age of 15 and am now 50 years old. I have been on phenobarbital the entire time until just recently. My state (Michigan) instituted an across-the-board requirement for all people on controlled drugs to take a mandatory urine drug test and physical, the cost of which is not covered by insurance. Last year, I paid $300 out of pocket just to be able to get my prescription filled. So, this year, I decided I would try to save some cash and asked my doctor to put me on a drug that wasn't on the list of controlled substances. We decided on Keppra, and I took it for one week. BIG mistake! I had severe dizziness, couldn't sleep, and felt like I was having auras all day and night. Luckily, I didn't have any seizures on Keppra, but my problems vanished when my doctor put me back on phenobarbital. Phenobarbital may be a controlled substance and costly to get in Michigan due to the drug testing requirements, but it sure works well for me."
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Your review helps others make informed decisions.- LAC...
- Taken for 10 years or more
- July 2, 2018
"I have taken phenobarbital medication prescribed by my doctor for over three decades, and if taken daily at the same time or one hour earlier or later from the previous day, it works very well. Now, what I have noticed is that if you take your medication the following day and are 4 to 6 hours late, you might have a seizure due to the fact that the medication drops significantly. This is why you must take medication daily at approximately the same time in order for the medication to work very well. One more fact: your medication levels will need to be checked periodically in order for the medication to work. Think of the medication as chlorine in a pool of water, and the chlorine must be enough and checked often in order for the pool water to be clean and clear."
- jls...
- Taken for 10 years or more
- January 7, 2017
"I am now 78 years old. Have taken 15 mg in the AM, 30 mg at PM since the 1960s. December 13, the neurologist told me to eliminate the AM, take only PM. 'Because it might affect my liver.' Dizziness on December 18, 19, 20. December 21, chest pains, December 23, to the ER for chest pains. Given Imdur. ER scheduled a stress test, it showed no heart condition. Dec 30, chest pains again. ER doctor suggested a med for vertigo. Slight relief. Cardiologist suggested an MRI but suspected it was withdrawal of phenobarbital. Cardiologist said to contact the neurologist, who did not return my call 'because she was on vacation.' Pharmacist called her office, got the original phenobarbital, and I felt immediate relief. Lesson: you know your own body!"
- Jus...
- February 16, 2018
"Had Grand Mal seizure early 1980s. No seizures before. Started on Phenytoin, and Phenobarbital was added later. Neurologist decided it was 'old-time medicine,' switched me to Topamax. Felt weird, doc did nothing. In 5 months, I blacked out walking down the sidewalk of a major road. Totaled a car on the interstate at rush hour. Blacked out standing at work. Every time I awoke in the hospital. I refused to leave the hospital last time, saying, 'I want my old-time medicine back that works for me, or I will live in the hospital lobby.' I got old-time meds back and fired the doc. I know my body. Cash price for Pheno in the 1980s was maybe $5. Now $100. Why? But I will pay to remain seizure-free!"
- Win...
- Taken for 10 years or more
- December 6, 2014
"Had epilepsy since 14, now way over 60 and been on phenobarbital all my life. Doctors have tried new ones on me, but they had side effects, whereas phenobarbital has been good for me. Epanutin caused gums shrinking and was bad for my liver. Now I have been put on Keppra, and I cannot keep awake, and my ear hurts. Docs, leave my pills alone, please."
- Anonymous
- September 7, 2009
"I have been taking it for 15 years and no major side effects. Even took it while pregnant. The doctors recommended it as a safe medicine to control seizures, and my baby was fine and I was fine. Thank God!"
- may...
- April 6, 2009
"It has worked for me. Other seizure medications caused me severe side effects. It does make me sleepy, so I take it prior to going to bed at night. Otherwise, no side effects or alterations in behavior."
- Lai...
- September 13, 2019
"I have taken phenobarbital since I was 4 years old .25mg. They raised it 15 years ago to .34mg. Doc. Told me the .25 wasn't doing anything for me and took me off it. 9 months later I had a grand mal seizure and went back on to phenobarbital. I don't want anything else. My sister 2 times has asked what I'm on for friends of hers who son has seizure and they couldn't get them under control. He is now doing good on phenobarbital."
- som...
- Taken for 2 to 5 years
- January 24, 2017
"On phenobarbital from age of 2 to 8, because I passed out in the high chair, probably hyperventilated. I was giving dose before bed every night. I couldn't fall asleep till nearly morning. As an adult, on meth for 20 years. I don't know if there is a connection or not, but no one else in my family is an addict. I don't mean to whine, just telling my experience."
- Dog...
- Taken for 2 to 5 years
- June 1, 2024
"Our pug started having seizures at age 1. They progressively got worse while on the levetiracetam. He was getting a monthly cluster of 14 grand mal seizures in a 24-hour period. His seizures have gotten much better since he got on phenobarbital. The other game changer was to also give him gabapentin immediately after his first seizure when it was safe to do so. He has been seizure-free for 14.5 months! The last time he seized up, he had only 4 seizures over 24 hrs instead of 14. Taking him off wheat may also have helped. The phenobarbital saved us from having to put him down."
- Tim...
- Taken for 10 years or more
- March 23, 2023
"I have been taking phenobarbital 100 mg since 1975. Many doctors have tried to get me off of it for newer drugs but if it ain't broke don't fix it. I was taking 400mg a day and was seizure-free. I finally went down to three a day. The biggest problem I have been having is the pharmacy has to order it every month the same pharmacy that for the last 20 years have carried 6 months at a time and the last year they not only did not know how to count but when I say something about it they say I'm lying. However, the ww458 phenobarbital works very well"
- Ste...
- Taken for 10 years or more
- January 10, 2022
"I took this for 15 years. Controlled the seizures. Some side effects were good.. Low resting pulse, low blood pressure-almost too low. I slept well. Other side effects were worrisome. Bloodwork at annual physicals showed increasing levels of liver enzyme AST, cholesterol- both good and had. Also anemia started showing showing. So I asked neurologist for a change. Lamictal now for 4 years. Other side effects."
- gam...
- Taken for 5 to 10 years
- May 20, 2014
Luminal (phenobarbital) "No real severe side effects, and works well with no mood-altering properties. Recommended+"
- Anonymous
- December 28, 2008
"I'm taking it since 1966 without any side effects."
- Pol...
- December 2, 2016
Luminal (phenobarbital) "Taking for over 20 years. Controls generalized seizure activity. No known side effects. Took during pregnancy with little issue (child had to be weaned off after birth)."
- lac...
- June 14, 2009
"Taken this medicine for decades and so far no side effects or damage to the liver. Works very well if taken daily at or near the exact time."
- Fra...
- November 11, 2015
"I have never had side effects nor adverse reactions when taking phenobarbital. I take it responsibly, as directed. I have been on it for at least 60 years."
- Qlo...
- Taken for 2 to 5 years
- May 11, 2020
"IDK but ever since iIve had a seizure and started taking this medicine, i feel sad, irritable, and angry. but it works! I've never had a second seizure!"
- May...
- Taken for 10 years or more
- May 12, 2022
"My son has been taking phenobarbital after having his first seizure at age 5 he is now 28."
- Big...
- Taken for less than 1 month
- April 9, 2018
"It was ok at first but the second day I couldn’t stop shaking"
- gga...
- Taken for less than 1 month
- July 15, 2021
"Excellent anti seizures w/o Benzodiazepine. Benzo withdrawal is a nightmare This is a much better medication"
Learn more about Seizures
Care guides
- Epilepsy
- Epilepsy and Pregnancy
- Generalized Tonic Clonic Seizures
- Nonepileptic Seizures
- Status Epilepticus
Medicine.com guides (external)
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Professional resources
- PHENobarbital, PHENobarbital Sodium (Anticonvulsant) monograph
- PHENobarbital, PHENobarbital Sodium (Systemic) (Sedative) (AHFS Monograph)
- Phenobarbital (FDA)
- Phenobarbital Elixir (FDA)
- Phenobarbital Oral Solution (FDA)
"I started taking phenobarbital back in the early '80s when I had a seizure and haven't had one since. They first started me on Dilantin and Tegretol, but none of these worked, even taking both of them together did nothing. The first dose of phenobarbital, 100 mg at night, that I took, and I was seizure-free. Lately, these new doctors have tried taking me off of it for newer medications, but the newer meds have horrible side effects, which I do not get with phenobarbital. Heck, I never had any side effects with phenobarbital. If it ain't broke, don't fix it. I'll take my 60-year-old medication any day over these newer ones like Keppra."