What is so bad about Phenobarbitol?
- Thread starter gonyere
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
While it can be as effective at seizure control as more modern drugs, Phenobarbitol tends to be less well tolerated due to its side effects (which include drowsiness, sedation, depression and agitation). It interferes with hormonal forms of birth control, and represents a significant risk to the fetus during pregnancy. It's not recommended for long-term use by children under 12, or by the elderly. It's also potentially habit-forming.
It's less-effective than other meds in treating partial seizures.
On the plus side, it's inexpensive, fast-acting, and generally effective, and because of this is considered a first-line epilepsy in the developing world, where 85% of epilepsy cases occur.
It's less-effective than other meds in treating partial seizures.
On the plus side, it's inexpensive, fast-acting, and generally effective, and because of this is considered a first-line epilepsy in the developing world, where 85% of epilepsy cases occur.
car05161967
New
- Messages
- 182
- Reaction score
- 0
- Points
- 0
I am probably part of the older generation here, since I am 45.
I started on a combo of Dilantin and Phenobarbital when I was less than a year old and, the combo was replaced with Tegretol when I was 16(that was replaced with Carbatrol, when I was 33).
As I recall, I was told by the pediatric neurologist I was seeing, that both of those drugs start to lose their effectiveness, once a patient reaches their teens.
I started on a combo of Dilantin and Phenobarbital when I was less than a year old and, the combo was replaced with Tegretol when I was 16(that was replaced with Carbatrol, when I was 33).
As I recall, I was told by the pediatric neurologist I was seeing, that both of those drugs start to lose their effectiveness, once a patient reaches their teens.
Not sure I can add anything useful here, but I live in a developing country. When my son was prescribed phenobarbital, it cost about $5 for a 3-month supply. Now that he is taking Keppra, it costs about $75 per month. That is a new price, down from $150 per month. A lot of people in this country make $200-$300 a month, so they cannot afford the newer medications. The above is the cost for a children's dose, so I imagine that adults would pay much more. When the doctor prescribed Keppra, he told us there was something cheaper he could prescribe but that he recommended we choose Keppra, if we could afford it, for better seizure control.
My understanding is that phenobarbital is prescribed to infants because they (doctors/researchers) have more understanding of the long-term effects, while newer medications have not been as widely tested in this population. Phenobarbital can be prescribed for all types of seizures, which is suitable for infants since it is rarely clear what kind of seizures an infant is having during the first year of life. Keppra has recently been approved for use in infants, so it will be interesting to see if it becomes more widely prescribed now.
Phenobarbital was not working that well for my baby. We had to keep increasing the dose and the doctor mentioned several times that the medication is known to delay development in young children. It is also potentially damaging to the liver and causes drowsiness. The doctor was keen to switch my son to Keppra as soon as possible and said they only use phenobarbital because, as bad as it is, that is the best option for very young babies.
I was afraid to give Keppra to my young son because of the many negative things I have read here. But so far it is actually working to control his seizures in a way that phenobarbital did not. The side effects have been minimal and are mostly noticeable each time we have increased the dose. He hated the taste of Keppra in the beginning and would gag each time he took it. But now he is used to it and seems to be doing fine. The doctor said it does not delay development like phenobarbital, and that is a plus in my book.
My understanding is that phenobarbital is prescribed to infants because they (doctors/researchers) have more understanding of the long-term effects, while newer medications have not been as widely tested in this population. Phenobarbital can be prescribed for all types of seizures, which is suitable for infants since it is rarely clear what kind of seizures an infant is having during the first year of life. Keppra has recently been approved for use in infants, so it will be interesting to see if it becomes more widely prescribed now.
Phenobarbital was not working that well for my baby. We had to keep increasing the dose and the doctor mentioned several times that the medication is known to delay development in young children. It is also potentially damaging to the liver and causes drowsiness. The doctor was keen to switch my son to Keppra as soon as possible and said they only use phenobarbital because, as bad as it is, that is the best option for very young babies.
I was afraid to give Keppra to my young son because of the many negative things I have read here. But so far it is actually working to control his seizures in a way that phenobarbital did not. The side effects have been minimal and are mostly noticeable each time we have increased the dose. He hated the taste of Keppra in the beginning and would gag each time he took it. But now he is used to it and seems to be doing fine. The doctor said it does not delay development like phenobarbital, and that is a plus in my book.
Mr. Pibb
New
- Messages
- 92
- Reaction score
- 0
- Points
- 0
So if one has been on Phyneo. before, for me almost 25 years before a switch to new fangled drug that works but leaves me feeling somewhat a drunk feeling. Then were to switch back to it would you get the same advearse affects or could the be completlly different
I suppose I should update here - I went and saw my neuro on Tuesday and after a brief conversation he agreed to switch me back to phenobarb.... from what he explained it just has such a bad reputation for having nasty side effects that they don't recommend it to anyone anymore... but if thats what I want, and I'm OK with them, then thats fine. So, I'm on day 3 now of being back on phenobarb, and so far I feel normal 
I can't wait to get off the keppra and see how I feel then
Emily
I can't wait to get off the keppra and see how I feel then Emily
It works for some people without major side-effects. I don't think it's a bad drug for adults, especially if you already know it works for you with causing major side-effects. The problem with it comes when they prescribe it for toddler aged children. when my son was put on phenobarbital at 13 months he stopped making developmental milestones and stopped feeding himself. He also started having sever reflux and trouble with coordination. I have talked to (via websites like this one) way too many moms who have seen the exact same thing in their children. Some toddlers pick up where they left off when they are weaned off phenobarb and others have delays that last the rest of their lives.
car05161967
New
- Messages
- 182
- Reaction score
- 0
- Points
- 0
I think I started Phenobarbital, when I was 5, in conjunction with Dilantin. I was weaned off of them when I was 16. I don't recall any ill effects. But I did have seizures on occasion.
I was on phenobarbital probably until about 8years old or so (from when I was 14months old) and for me it was like I was a zombie. They tried weaning me off it earlier than that but phenobarb was the only medication that seemed to do the trick (they did use it combined with tegretol for a few years and that helped but couldn't take me off it entirely at that stage).
Mr Pibb: As for adverse reactions I assume that you could have a different reaction second time around because I recall having the implanon (contraceptive) implant between my first and second pregnancies.I had no adverse reactions and it was for me, a miracle option. After my second pregnancy I went back and had another implant and that time had really bothersome side effects. There was nothing different except age. I know that is obviously a totally different drug but I assume it could work the same with AEDs too.
Mr Pibb: As for adverse reactions I assume that you could have a different reaction second time around because I recall having the implanon (contraceptive) implant between my first and second pregnancies.I had no adverse reactions and it was for me, a miracle option. After my second pregnancy I went back and had another implant and that time had really bothersome side effects. There was nothing different except age. I know that is obviously a totally different drug but I assume it could work the same with AEDs too.