What is so bad about Phenobarbitol?

[gonyere]

I have yet to find a solid answer to this question. I was on 120mg of phenobarb for ~16 years - from the time I was 6.5 till I became pregnant with my first son, who is now 5.5 yrs old. At that point I read how horrible it was for babies and weaned myself off it - I'd not had a seizure since my first tonic-clonic which put me in a coma for weeks when I was 6.5. And I was fine - my son was born perfect and healthy in every way. I breastfed him for ~3yrs - my second son was born when he was 2.5yrs old and I was fine and he was (is) fine. Then, just shy of 2 yrs ago now, I had my first seizure (tonic-clonic) in 20 yrs - this is !~January 2011.

Since then I've seen 3 different neurologists the first two of whom treated me like an idiot and wouldn't explain themselves to me - they told me phenobarb was horrible, and I was to be on 3000mg of Keppra. I hate the stuff. It makes me feel horrible and angry and semi-drunk and just... horrible. So, for the last ~yr I've taken 1000mg at night and been (mostly) OK, as long as I remember to take it. I just saw a 3rd neuro a couple weeks ago, and he's having me try Lamictal now - I'm currently on 50mg of Lamictal +1000mg of Keppra, till I get up to 100mg of Lamictal and then ween off the Keppra. I like him much better than the last two - he's actually been willing to listen to me and talk to me somewhat. But he was no more willing than anyone else to even discuss phenobarbitol!!

I just don't understand it - phenobarb worked fine for me for ~16 years. I never had any of the nasty side effects relating to mood or feeling drunk or anything. I realize its bad for my liver and bones and what not, but from what I can tell none of these drugs are actually 'good' for you. And what I *do* know is that Keppra & Lamictal are expensive as heck and that we *DONT* know what long-term side effects really are, cause' they're too new!!

So... yeah. Do any of you know whats so horrible about phenobarb? Why is it treated as all but a non-option today? What is so much better about Keppra, Lamictal, etc??

 

[momof3boys]

I was on phenobarbatral as an infant. I was dx'd with epilepsy at the age of 18 months old, and that was my first anti seizure medication I was put on. I will have to ask my mom how long I was on it for. But thats one I do recall taking as a child. Ive been on different medications through out my child hood years, but since the age of 17, Ive been on Keppra 3000mgs a day, and then they added Carbatrol 1200mgs a day. I was taking those two anti seizure medications til the age of 29, when I had my first VEEG, and they took me off the carbatrol, but kept me on the keppra. I am now taking 3000mgs of Keppra XR. I had terriable headaches with the regular keppra, and was told to try the keppra xr, which has taken all the headaches away, and has kept me seizure free.

But I will ask my mom why I was taken off the medication, and get back to you on that.

 

[KarenB]

Everyone has different reactions to different meds, but Phenobarb seems to cause a lot of negative effects for a number of people, including

Because phenobarbital is a barbiturate, it depresses brain function, reduces the breathing and heart rate, and decreases blood pressure and body temperature. As a result, the most common side effect of phenobarbital is sleepiness or fatigue. Patients should be cautioned about driving, operating machinery, or any other dangerous activity until they see how they react to this medication.

Other side effects include:

depression
hyperactivity (in children)
impaired attention (in children and adults)
dizziness
memory problems
decreased sexual interest (libido)
impotence
slurred speech
nausea
anemia
folate deficiency
rash
fever
low calcium levels, bone loss
Phenobarbital also has been found to reduce the effectiveness of oral contraceptives (birth control pills), so women who could become pregnant may want to consider another form of birth control.

Long-term use of phenobarbital can lead to changes in the soft tissues, including:

joint pains mimicking rheumatism
heel and knuckle pads
frozen shoulder
Dupuytren's contractures
fibromas (fibrous tumors) of the bottom of the foot
Peyronie's disease (hardening of a portion of the penis)

http://professionals.epilepsy.com/medications/p_phenobarbital_commonside.html
Quite frankly, these side effects don't sound much worse than the newer drugs. If you had a good experience with Phenobarb in the past, and are having a bad experience with the current meds, I'd push the doc to put you back on Pheno

 

[Dolores]

I find this an interesting question because I've been on Dilantin & Phenobarbital for 40+ years. Started the Dilantin when I was first diagnosed. The Pheno was added a few years later to control petit mal seizures since my eeg's consistently showed both types of seizures. I've never had a problem with the phenobarbital and my seizures are under control. Neurologists have wanted to switch me off the Dilantin but never mentioned the pheno. I refuse to switch because Dilantin had kept me seizure free and I know & can deal with the side effects.

 

[momof3boys]

Ok, I got ahold of my mom to ask her why I was taken off of Pheneobarbatral and she said it caused me to be more sleepy than usual, and the neuro I was seeing, said it can cause alot of psychological issues. which I guess back then he said they were seeing alot of issues like that with people taking the medication. So they decided to switch me to another medication.

 

[Cardones]

Hi

Why were you on meds for 16 years after just one seizure and then having no more for so long? Unless there is a good reason, I would have thought they normally try and wean kids off meds if they are seizure free for a good while. Were you still having small seizures at all?

There might be something in your history that might explain why the docs are reluctant to use pheno again.

 

[jyearta]

I too took phenobarb alone with Dilantin from 1971 until 2004, when my FP said these were old meds. that I needed to change to a newer drug.

I didn't give it a second thought, since this was a DR. I was put on I don't remember how many drugs. I finally asked to be referred. to a Neur. who put me on Keppra. That was the worse meds. I have EVER taken. I then asked for a referral to another Neur, I asked to be put back on Dilantin and Phenob. He agreed with the Dilantin but refused Phenob,

 

[gonyere]

Every stress-eeg I ever had showed 'seizure activity' in my brain and so I was kept on it - my parents were always paranoid as was my neuro. I remember being called 'the miracle child' - I apparently seized for days and wasn't really expected to wake up and be OK... but I did, and I was/am I do remember hearing my old neuro say that he thought there was just something about my brain that once I started seizing didn't stop without major interventions... I can honestly say thats not true at this point, as I've had several seizures over the last 2yrs - one every 2-4 months on average.

I've read about side effects of phenobarbitol vs keppra lots, and some on lamictal (though not a lot as I've only been on it for a couple weeks now), but I just don't understand why neuro's all seem to hate phenobarb so bad. I never had any of the nasty psychological side effects relating to mood/sleepiness/etc, even when I went back on 120mg briefly after my first seizure 2 yrs ago before being switched over to keppra.

 

[pita300]

I took Phenobarb at one time. My opinion all AED have horrible side effects. The list of side effects that were posted eariler are similar to the ones I am on now.. If you want my opinion I believe its the drug companies. There are alot of new seizure meds today that are bigger money makers than phenobarb. Lets face it. Phenobarb when I took it cost like $5.00 per month. Now Tegertol XR with out insurance is close to 100.00. And lets also face it the doctors are influenced by the drug companies and will push the one that makes the most money for them and the drug companies.

 

[2ndchances]

I was on Phenobarb as a young child when I had two seizures induced with high fever, and was weened off as I was entering school. Pita300, I've had this discussion with others too. I'm on Vimpat, and my $88 for a month suddenly seemed tolerable when I found out that without insurance it would be $455. I look forward to the day I'm seizure free again, but I'm not sure if the seizures or side effects of the meds are worse anymore.

 

[Fedup]

I am on Phenobarbital a long time now, the thing with Phenobarbital is first it is a barbiturate and very hard come of second of all and most important is it is toxic to your system, several major organs can be and usually are effected eg kidneys and liver to name two. The recommended highest level one is supposed to take is around 300mg daily. It is an old drug which is still in use.

Doctors have been able to study and observe the side effects of phenobarbital for many years. In some ways this is an advantage over new medicines. Many doctors no longer prescribe it unless other seizure medicines have failed, however, because of concern that its side effects often outweigh its benefits (except for certain groups such as very young children). It may be used more frequently in situations where cost is a critical issue, such as in developing countries.

The most common side effect of phenobarbital is sleepiness or fatigue. Be careful with driving, operating machinery, or any other dangerous activity until you know how you react to phenobarbital.

Some rather important side effects are, depression which can be and in a lot is sever,
hyperactivity (in children)
trouble paying attention (in children and adults)
dizziness
memory problems
decreased sexual interest
for males, inability to have an erection
slurred speech
upset stomach
anemia
deficiency of the vitamin folic acid
rash
fever
low calcium levels, bone loss

These I have taken from the leaflet that comes with them for me, the other thing is it gives you a very high pain threshold, but the one to watch is it being poisonous to your system. You need to take a lot of precautions apart from what your doctor suggests which usually is not much. You will find as a child most of us have some experience of it and not all good, my body can tolerate it and tere are side effects I am willing to live with. There is no drug old or new that does not have side effects, we all have to see what works and what side effects we are willing to put up with. Sorry but its true and they are trying to wean me off it, they stopped.

 

[Cint]

I took Phenobarbitol many years ago and had an allergic reaction to it. My neuro then put me on Dilantin.

Here is more info from Wikipedia:

Phenobarbital (INN) is a barbiturate and the most widely used anticonvulsant worldwide, and the oldest still commonly used. It also has sedative and hypnotic properties, but as with other barbiturates, it has been superseded by the benzodiazepines for these indications. The World Health Organization recommends its use as first-line for partial and generalized tonic–clonic seizures (those formerly known as grand mal) in developing countries. It is a core medicine in the WHO Model List of Essential Medicines, which is a list of minimum medical needs for a basic health care system. In more affluent countries, it is no longer recommended as a first- or second-line choice anticonvulsant for most seizure types, though it is still commonly used to treat neonatal seizures.

Indications

Phenobarbital is indicated in the treatment of all types of seizures except absence seizures. It is no less effective at seizure control than more modern drugs such as phenytoin and carbamazepine. It is, however, significantly less well tolerated.
The first-line drugs for treatment of status epilepticus are fast-acting benzodiazepines, such as diazepam or lorazepam. If these fail, then phenytoin may be used, with phenobarbital being an alternative in the US, but used only third-line in the UK. Failing that, the only treatment is anaesthesia in intensive care.
Phenobarbital is the first-line choice for the treatment of neonatal seizures. Concerns that neonatal seizures in themselves could be harmful make most physicians treat them aggressively. No reliable evidence, though, supports this approach.

 

[Elsie]

I would never want to take that ...stuff again. When I was on that I didn't want to live.

 

[Nakamova]

As with most of the seizure meds, Phenobarbitol works for some and not for others. Neurologists tend to oppose it for several reasons

1. Risks associated with addiction, dependence and withdrawal
2. It's an older drug, and docs tend to like the newest, latest thing

Neither of these matter if it works fine for you. I know someone who has been on Phenobarbitol all her life, and she constantly has to convince the neurologists that she doesn't want to taper off of it and try something else.

 

[Dolores]

Neither of these matter if it works fine for you.

Thanks Nakamova!
I sometimes feel "behind the times" being on such "old style" drugs. But the facts remains that

1. they control my seizures and
2. I have a doctor who constantly watches out for any negative effects and
3. I understand the side-effects and can deal with them

As you point out, it doesn't matter how a drug affects anyone else, it does matter if it's right for me.
Thank you for that reminder!

 

[gonyere]

Ok, so I'm built up to 50mg of lamictal a day... if I were go off it now, would I need to drop back to 25mg for a few days before going off it completely? As for Keppra or Phenobarb or most other epilepsy drugs as I understand it.

 

[acpollard2010]

im on it as a secondary but for some reason cant kick it we have tried 3 times to taper off all breakthroughs.and i hate the stuff in my opinion as someone who is using it there shouldnt be a drug out there thats like a narcotic.

 

[cazzy]

these first generation drugs and very addictive so i now on cloberzam and still as addictive but it do the job..i wish i was't but it helpful and i would dread the withdrawals i gather many people have big problems coming off barbs...but would you come off insulin no.

 

[Nakamova]

Ok, so I'm built up to 50mg of lamictal a day... if I were go off it now, would I need to drop back to 25mg for a few days before going off it completely?

Low and slow is always safe. For a Lamictal taper, I would recommend dropping to 25mg, and staying there at least a week, ideally two, before dropping again. When I've tapered, I've cut my 25mgs pills in half, so that I can drop 12.5mg at a time!

 

[MaryK]

I agree with Dolores, Nakamova and others. I have been on 120 mg of phenobarbital for 40 years and never want to go off this drug. My neurologist every now and then brings up trying something new, but I am adamant about remaining on phenobarbital. For me, it makes no sense. It is like all other drugs.. full of side effects and precautions that I fully understand.