Generic Name: Mysoline (primidone)
Mysoline Reviews
For Seizures "I became ill in 1982 at age 33 with encephalitis, brain damage on the temporal lobe, and grand mal seizures. The next year, I was also diagnosed with lupus in addition to epilepsy. It took 5 years and NIH treatment of 250 mg of Mysoline 3 times a day to control my seizures. It has been controlling my seizures, and I am now 65. AARP denied my brand name Mysoline for seizures, even though I was going to pay high co-pays. We pay our own insurance, so this is a real problem. The worst is fighting AARP to pay their part when I know Mysoline works for 27 years. How can a person at a desk just suggest other medicines to take when your doctor and you state that this is the best one for you?"
"My doctor first prescribed Mysoline for me at least 12 years ago, after attending a medical conference. I was unable to raise a cup to my lips or cut the food on my dinner plate. My tremor was noticeable by family and friends. I had been checked for Parkinson's, and the results were negative. This doctor learned that this medication was taken for essential tremor, which was misdiagnosed too many times by doctors. He wanted me to try it at least. I readily accepted to take Mysoline, and before I knew it I had results. Taking this prescription gave me my life back. I no longer needed assistance at dinner time or by family and friends. I live a normal life now, not ashamed to go out in public. Inderal was added with Mysoline just lately. Thanks."
For Seizures "I was prescribed this medicine back in the late '80s for seizure control. I recently stopped using this in 2010. It controlled my seizures well, but I did not realize the side effects of it. Side effects were irritability, anger, increased depression, and behavior. Because I literally grew up with this medicine, I can now see these issues after changing the medicine. My brain was built to use it during puberty/young adult. This does control seizures and actually suppressed anxiety by slowing down all brain functions. Be aware that epilepsy is comorbid with depression quite often and this medicine may enhance/increase depression symptoms."
"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."
"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."
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!"
For Epilepsy "This medication is wonderful. I have been taking it 40 years no side effects stops seizures. I take a small amount of valium and dilantin with it I have my life back. Now there is a shortage. I cannot take the generic I have falls. Went to the mayo clinic past all the tests in regard to falls passed them all. Went out the door fell and broke my shoulder while on primadone. I have to have mysoline because of filler and dye allergies. Now they say they have a shortage. I cannot take the primidome . Anybody else having this problem?"
For Benign Essential Tremor "I found Mysoline effective for my essential tremor, but the side effects of tiredness, lack of energy, plus reduced sexual function (difficulty in ejaculating) is quite frustrating."
For Seizures "I have been taking this medication for 30 years and have never had a side effect or seizure. Works very well for me. No complaints."
For Seizures "Great Seizure control. Low side effects after first 2 weeks."
For Seizures "No seizures no side effects"
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- Epilepsy
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