"Thanks for all info Anna. Will keep you posted.
G"
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Susan Grandfield
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Susan Grandfield's Discussions
Mebaral Discontinued
Started this discussion. Last reply by Grace May 14. 59 Replies 0 Likes
Hi Everyone,I am 63 years old and have been taking Mebaral since 1984--before that I took Dilantin for 4 years. In 1980, I had a grand mal seizure, I had unknowingly been having myoclonic seizures…Continue
Tags: medication, discontinuing, JME, Mebaral
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Anna Alan Adams replied to Susan Grandfield's discussion Mebaral Discontinued"But, please if you find out anything different or get any leads we would love to know. I just wanted to share what we have found so far. Grace, I do hope you start to feel better soon. I know the transition can be really rough.
"
Anna Alan Adams replied to Susan Grandfield's discussion Mebaral Discontinued"Hey Guys,
So glad to hear some of you are doing well and to those of you who are not feeling well, Hang it there! A few months back we e-mailed about 7 different departments at TAJ Pharmaceuticals in India and recieved no reply back. I then had a…"
Grace replied to Susan Grandfield's discussion Mebaral Discontinued"Tried Keppra years ago. Had involuntary movements on the smallest dose that made life/ work impossible. Glad it works for you. I wonder if anyone looked into a pharmacy that would compound Mebaral? I will make some inquiries."
Susan Grandfield replied to Susan Grandfield's discussion Mebaral Discontinued"Hi Grace and all,
I didn't have good luck with phenobarbital, even though it is supposed to be similar to Mebaral chemically or whatever. It made me feel really out of it--and I only took a small amount. One day I went to work after taking the…"
jan ronk replied to Susan Grandfield's discussion Mebaral Discontinued"Yes especially since they bought out ovation to produce this rare drug. hit them where it hurts in the pocketbook. don't buy their other drugs who knows when they'll stop making them and call your congressman. they have…"
Grace replied to Susan Grandfield's discussion Mebaral Discontinued"Hello All
Started weaning off Mebaral and onto phenobarbital this week. Hairy so far. All sorts of side effects from headache to memory issues... And this s just a beginning. Several top docs I consulted said this was a logical choice as I am 49 and…"
jan ronk replied to Susan Grandfield's discussion Mebaral Discontinued"Having seizures again! thank Lundbeck. can't drive anymore happens in morning during night anytime so social life is shoot. also be careful have read where an anticonvulsant is causing menigtis- no bactrial or viral-just a…"
Janet Grace replied to Susan Grandfield's discussion Mebaral Discontinued"Checking in. I have been on primidone since March. It seems to be working for me. SO FAR anyway! Anyone else on primidone? I was not tapered off Mebaral. So the first couple of weeks were hairy. Seem to be better now.
"
jan ronk replied to Susan Grandfield's discussion Mebaral Discontinued"the mebaral was expired march 31 get on the new program there was something wrong with that mebaral anyway they increased my mysoline"
Susan Grandfield replied to Susan Grandfield's discussion Mebaral Discontinued"So update to all. I saw a different neurologist (asked for a 2nd opinion) who thought the idea that I could quit taking drugs for epilepsy was ridiculous. That is because I still have myoclonic seizures, so I am not seizure free. She put me on…"
jan ronk replied to Susan Grandfield's discussion Mebaral Discontinued"have been on mysoline the name brand for primadome. it is nausiating sideeffect. primadone did not work. i was taking the mysoline and mebaral in small doses and they worked. since the mebaral has been stopped my levels went…"
Anna Alan Adams replied to Susan Grandfield's discussion Mebaral Discontinued"Primadone I believe is the generic for Mysoline. The doctor we saw at UCLA was going to put my Dad on Mysoline only after he had first recommended phenobarbital and my Dad had said that pheno had not worked in the past. My Dad decided to give pheno…"
Janet Grace replied to Susan Grandfield's discussion Mebaral Discontinued"Does anyone know about Primidone? Got into a doctor Tuesday and he gave me a prescription for it. Said to finish off Mebaral and then take this the next day! I am just anxious...nervous...scared!"
Anna Alan Adams replied to Susan Grandfield's discussion Mebaral Discontinued"Hey Steven,
Thank you for letting us know how this transition has gone for you so far. Please continue to keep us posted. So glad it has gone smoothly for you so far!
"
Anna Alan Adams replied to Susan Grandfield's discussion Mebaral Discontinued"Lundbeck still has some Mebaral in stock, if you need it, your Dr. will need to write a prescription and contact Lundbeck's Specialty Pharmacy (Mebaral Support Center): 800-310-5308. When he/ you call, it will probably go to…"
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Comment Wall (3 comments)
- At 5:59pm on November 11, 2011,
Jessica Wallace said… Hi Susan!
Welcome to the site. It's a great place to be. We're happy to have you here, and if there's anything I can do for you, please don't hesitate to ask.
I also wanted to let you know about two groups I created.
Living Well with Epilepsy
http://epilepsyfoundation.ning.com/group/livingwellwithepilepsy
Step Up and Speak Out, for those of us who are tired of the stigma and lack of knowledge attached to Epilepsy.
http://epilepsyfoundation.ning.com/group/standupandspeakout-Jessica
"Whatever you do in life, no matter how insignificant, do it, because nobody else will."HAPPY EPILEPSY AWARENESS MONTH! WHAT WILL YOU DO?
- At 2:48pm on November 11, 2011,
Alexander Lodi said… Greetings Susan!
Welcome to the site. I am sure you will find our site warm and friendly. Feel free to browse my blog if you wish and ask me any questions you may have. I'm more than happy to help.
Alexander
http://epilepsymentor.weebly.com
"To the world you may be one person, but to one person you may be the world." - Unknown Author
- At 2:13pm on November 11, 2011,
I&R Group said…
Welcome!
Hello, this is Mary Ann an Information Specialist with the Epilepsy Resource Center. The Resource Center provides information about epilepsy, community referral information for support and assistance, and literature resources to increase understanding of the condition and improve management of the condition. Our toll free number is 800-332-1000.Best wishes,
Mary Ann
Epilepsy Foundation
Epilepsy Resource CenterNovember is National Epilepsy Awareness Month! www.getseizuresmart.org
Please check out these Foundation programs:
Take Charge: http://www.takechargeteens.org/
Go EYC: http://www.goeyc.org/
School Nurse Online Training: http://www.nasn.org/Default.aspx?tabid=120
Epilepsy and Seizure Response Training for Law Enforcement: http://www.epilepsyfoundation.org/firstresponders/index.cfm
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