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Has anyone heard of Meberal???

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Posted 4/5/2006 9:53 PM (GMT 0)
Hi Everyone.  I am a 32 yr.old Female and have been on Meberal since I was 9 years old.  Just two weeks ago I had my fourth seizure.  I had been off of Meberal (took  myself off ) for over a year, and had just recently gone back on after a scary episode in NYC.  I live in an area where we have amazing medical technology.  When I first moved here, found a neuro and told them I was on Meberal, they had never heard of it!!  Two weeks ago in the ER they couldn't even check my levels because nobody new what it was.  I am going  to a new Neuro tomorrow and hopefully I will be put on something new. 

about my seizures....I was alone in a grocery store and started to feel disoriented, very confused.  I was able to make it to the check out and pay, but after that the rest is a complete blurr.  I do not remember anything until about 30 min. later when I was in an ambulance.  It was very scary to say the least, but thank god my children where not with me.  I am being told that my seizures are "provoked", be either stress, lack of sleep, not eating properly.  Every test I have ever had, EEG, MRI, CT, has always been normal.  It drives me crazy not knowing what is wrong with me.  Anyone with similar seizures? 

Thanks,

Stacey

Posted 8/16/2007 6:57 PM (GMT 0)

Hi Pal,

   I am 44 years od and started having Grand Mall seizure when I was 8 due to enchepilites because of a mosqito bite. originally I was on phenobarbitol and dilantin 3x daily and I would have a sezure on or about every 9 weeks. since I founfd meberal, a refinement of phenobarbitol and got my doctor to put me on it I have not had a Grand Mal seizure since 1984, but STRESS, CAFFINE, and LACK OF SLEEP definately increase your possibility to have a seizure. I also found out went your body has adjusted to the Meds and the time windows and dosages you are taking them if you alter them can cause a seizure also. Maby not a Major seizure but a simple  seizure

I have found a new doctor and now he wants to try to take me off the meberal and replace it with depekote. but as soon as we slowly dropped the dosage and and my meberal level fell below the level I needed to maintain a consistensy level within my system I got the begining part of the AURA like when I was going to have a grand Mal seizure. now my job in the office is stressfull and I believe it contributes majorly and when I was home I am OK . To Bad these work at home programs are all a scam. they would definately help everyone out with epilepsy. Hope this Helps out 

Nick

Post Edited (AOKGUY) : 8/16/2007 1:04:21 PM (GMT-6)

Posted 8/17/2007 3:53 AM (GMT 0)

Hey there

Barbiturates such as Meberal and Nembutal, are used to treat anxiety, tension and sleep as well as seizure disorders. Meberal is Phenobarbital.

I had a seizure 39 years ago and was on Phenobarbital for a couple of years but have never had a seizure since.

Looks like you got a great post right ahead of mine. Take care and keep posting.

 

Posted 8/18/2007 4:38 PM (GMT 0)
People with Disabilities, illnesses, and or other sicknesses such team up through thier research and share with each other . Then maby one day we can help eachother out. I also know everyones body chemistry is different but we could shed light on a direction for other to research as well. I will never give up on myself and if I am allowed sharing by stories and research with others.

Post Edited (AOKGUY) : 8/18/2007 10:45:25 AM (GMT-6)

Posted 10/26/2007 6:55 PM (GMT 0)
Hello,
I have been taking Mebaral since I was 2 years old. I unfortunately have not found a doctor that I trust enough to take me off of it and help me try something that has less potential long term side effects. Mebaral is not good if as a women you want to have kids because of breast feeding. It has also been known to have long term kidney and liver effects. Although I have to say honestly I have never had any problems that I know of with this. The truth is I live a very average life and I abuse it a little but over all I have had long spurts of time where I don't have seizures. I went almost 10 years with out having a seizure but when I went off of the meds because a doctor wanted to try, I had a seizure after about 6 months. My dosage is pretty low I take about 300 millgrams at night time, which for me is my most active. My philosophy has been if it works don't change it, there are people out there I know much worse then me but I ponder the thought of changing my meds just to see if there is something that works better? Or a med that can actually fix it instead of just sustain it. I know for sure that thats what Mebaral does although I can't say for sure if other meds don't do the same thing.
Its hard because all you have is your brain. I work as a manager and producer so my stress level is pretty high all the time. I drink coffee even though I know its probably not the best but its hard as a human not to live your life like others. I know I pay for it but clean living is hard especially when you know your not supposed to. Spoken like a true child. Another problem that I have found with Mebaral is it is getting harder and harder to find, I guess not as many people are using it so they have been trying to get rid of it for sometime. Which isn't a small stress for me at all. I am not a young pup where experimenting is easy anymore.
I would say that you should really talk to a doctor that is referred to you and have them really lay it out for you, you are young but be smart about it even if you have to do all the work yourself don't let someone else try and convince you to experiment with various drugs, its not a birth control pill its a brain control pill and I know of some that have trusted the doctors too much with out doing their own research to find out what the drugs do and what their side effects are. Finding the right doctor for you is key.
This is officially the second time I have posted on this site so, I am ranting a bit.
Good luck to you I hope you will post what you find out later.
Ciao
Posted 12/13/2007 4:27 PM (GMT 0)

Hi, I'm 49 years old and I was a child epileptic. I had my first seizure when I was around 2. I had gran mal and petite mal and it was difficult to get under control. I was finally put on a combo of dexedrine and meberal and never had another seizure! My last seizure was in 1964 and I was taken off all medication when I was eleven in 1969. I honestly don't know if I had any side effects from the meberal or dexedrine.

Just thought I'd share. :)

Nita

Posted 12/14/2007 12:39 PM (GMT 0)
Thanks for sharing your story with us and congratulations on being seizure free for so long! It must be a great feeling to be fit free without meds!
Posted 1/31/2008 2:23 AM (GMT 0)
Hi,

I came across this and saw the question if anyone had heard of Meberal.

I took Meberal as a kid in the early 1970s, but I am not sure for how long. I was not taking it or anything else when I had a seizure at seventeen.

Then I had a seizure when I was seventeen. My regular doctor (not the one who had prescribed the Meberal) put me on Dilantin (50 mg 3X a day) and Phenobarbital (30mg 3X a day) I still take these today.

I had a few seizures after that one, but thankfully I have not had a seizure in at least ten years. I still take the Dilantin and Phenobarbital.

With that seizure when I was seventeen, I remember feeling really funny at work (at a restaurant at the time). The next thing I knew I sitting in the kitchen with a bunch of people around me including my boss and someone from the first aid department. The person from first aid asked me if I knew where I was. I knew where I was and recognized people, but I had no idea what had happened.

I have always been very tired and very sore after the seizures that I have had.

I asked my doctor about getting off of the drugs. He said that I would have to be weaned off the drugs and I would have to give up my driver's license until I was determined to be seizure-free without the drugs. So I decided to stay on them - the Dilantin and Phenobarbital. That said, I understand that the side effects could be worse for women.

I hope sharing this helps in some way.
Posted 2/1/2008 12:11 PM (GMT 0)
Yes,
I've heard of it but of the 19 E drugs I've taken that's not one of them.
Belinda
Posted 9/17/2008 8:06 PM (GMT 0)
After trying dilantin, phenobarbital, meberal was the only one that worked for me.
Posted 10/1/2008 12:06 AM (GMT 0)
i was put on meberal in 1977. It was the only drug along with dilantin that finally controlled my grandmal seizures. The neroulegist that put me on that said it was a drug not often used. this was over 30 years ago. I am still on it today and under control. Do you all have the same problem in getting this drug. They always have to order it and its not cheap. thx

Posted 12/8/2010 5:37 AM (GMT 0)

I have been on Meberal since 1981.  I had my first of 2 grand mal seizure in 1978 at age 26, and was started on Dilantin.  In 1981, while pregnant, I had my second.  I was started on Meberal, due to possible side effects to my unborn child.  I have been seizure free since. 

Before I had my first seizure, I was having hallucinations and de’javus (sp) for a few months.  I was working hard, and had an erratic sleep patter (due to work) and under increased stress.  I now only notice an occasional aura, so it I do, I slow down, and make sure to be rested, work on keeping my stress down and maybe take an extra ½-1 pill every third night for a week.

Mostly due to cost ($300+ vs $5) and that Meberal is difficult to find, I am now going off the Meberal (300 mgm at bedtime) and switching to Phenobarbital (100 mgm q hs). I’m a week into this switch and so far, so good other than headaches, fatigue….

I think Meberal is a good medication, and if it was cheaper, I would stay on it.

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