Hey all,
Just wanted to know if anyone is on Phenobarbitone for there seizures and if this is a good tablet, and if there are any side affects etc. it is a bit strange taking drugs and you don’t even know what they can do to you.
Also can you drink while on them, I don’t mean have a heavy drinking night, I just mean one or two with dinner when you go out etc.
I will be asking my Prof these questions at our next appointment but that is not until middle of August
Kia Kaha Tiaki
DM
Hi DM. That drug is called phenobarbital here in The States. It is used more as a sleeping pill but can be used to control seizures. I knew a 5 yr old who was on it. Since alcohol also acts as a depressant and lowers the body’s resistance to seizures…please be careful. I don’t want anything bad happening to you.
Phenobarb is a VERY old drug…it dates back to 1912. There are MANY newer drugs with fewer long- and short-term side effects and the possibility of better seizure control. Did you get the prescription from your neurologist, neurosurgeon, or epileptologist? If you aren’t seeing an epileptologist, please think about it–they’re neurologists who specialize in epilepsy, and they know so much more than the other types of neuro. The Epilepsy Foundation (look up online) can help you find an epileptologist.
Drinking on phenobarb isn’t recommended; it slows the digestion of alcohol, so it’s harder to clear from your bloodstream. It also works as a depressant, so the depressant effects of alcohol are multiplied.
Hi DM
You can go to the pharmacy and ask them to print out a sheet all about the medication. This gives general information including posssable side effects, what you can and can not take with it, and a brief description about the drug. This printout is only a guide. I would be checking with the professor and his team before having a drink. They are the experts on your case, and are the ones to throw all the questions about your medication at.
Thanks every one for your reply’s.
I won’t drink until I have spoken with the Prof, it does make you a bit sleepy.
It seems a bit strange that he has given me such an old drug but it is working so far so I will talk to him when I see him.
Kia Kaha Tiaki
DM
Hi DM,
The caution against using alcohol with anti-seizure meds is applied to all (I think) anti-S meds. I’m not aware of any that say it’s ok. Do people on these meds drink? Sure. Safe to have one or two? Probably. Smart? Your call.
As for side effects, all the meds can have various side effects. I think they react so differently in people, that can range from no side effect to most of the things they warn about. I think the DRs usually start with the safest, older, well proven anti-s med first, like phenobarb. Then if the person’s seizures aren’t controlled, they move up the scale.
Best wishes,
Ron, KS
DM, I’ve been on Phenobarb now since 1987! Seizures are controlled and I have adjusted to any sleep side effects over the years. With regard to alcohol…I no longer drink AT ALL, but one or two shouldn’t bother u. My pediatric neurologist told me when I went off to college…“one or two is okay but if u feel buzzed you’ve had too much!” Could be the biggest “no sh*t” statement I’ve ever heard?! lol However, I rolled the dice thru college and a few years afterwards. Mixing the two is NOT a good idea, but that would make me a hippocrite. I was VERY fortunate to survive my drinking years! Not only will you get drunk WAY quicker than ur buds; once ur drunk how do u know when to stop? More importantly, alcohol will lower the seizure threshold of ur phenobarb so, for me, a hangover meant risking a grand mal seizure if I couldn’t sleep it off. In college, I could skip class if necessary, but once I graduated and had to work, there was no sleeping in after a night out! Seizure thresholds ARE affected.
As for phenobarb being a VERY old drug?..true. But since I was allergic to the others and phenobarb controlled my seizures with limited/no side effects, you gotta go with what works! JH is not an MD, and shouldn’t be criticizing why ur doctor has chosen phenobarb for u. Sure there are other drugs, but once a day with minimal side effects is a pretty good deal! Hope my experience helps, hang in there. -GK
Hi, thanks that has helped and given me more idea on what to do. But I take them three times a day I wish it was only once, what strength are yours, maybe I can get stronger ones so I can cut down how often I have to take them (after talking to the Professor of course) but I am happy with them so long as they are doing the job. Still very tired from operation and pills but I am sure that will come right.
Kia Kaha Taiki (stay strong and take care)
DM
DM, I’ve been on Phenobarb now since 1987! Seizures are controlled and I have adjusted to any sleep side effects over the years. With regard to alcohol…I no longer drink AT ALL, but one or two shouldn’t bother u. My pediatric neurologist told me when I went off to college…“one or two is okay but if u feel buzzed you’ve had too much!” Could be the biggest “no sh*t” statement I’ve ever heard?! lol However, I rolled the dice thru college and a few years afterwards. Mixing the two is NOT a good idea, but that would make me a hippocrite. I was VERY fortunate to survive my drinking years! Not only will you get drunk WAY quicker than ur buds; once ur drunk how do u know when to stop? More importantly, alcohol will lower the seizure threshold of ur phenobarb so, for me, a hangover meant risking a grand mal seizure if I couldn’t sleep it off. In college, I could skip class if necessary, but once I graduated and had to work, there was no sleeping in after a night out! Seizure thresholds ARE affected.
As for phenobarb being a VERY old drug?..true. But since I was allergic to the others and phenobarb controlled my seizures with limited/no side effects, you gotta go with what works! JH is not an MD, and shouldn’t be criticizing why ur doctor has chosen phenobarb for u. Sure there are other drugs, but once a day with minimal side effects is a pretty good deal! Hope my experience helps, hang in there. -GK
Hi DM, I take 200mg at bedtime…but I’m a pretty big guy. I know my dose has increased some since I first started on it almost 25 yrs ago. When I was young, my parents especially thought it was a good drug, bc I could take it once a day. I even remember sometimes growing up forgetting to take my pills at night, and then just taking them the next morning. I’m so glad u were able to see Dr. Morgan, as I have read wonderful things about him:) Also congrats on the obliteration! -GK
Hay Greg,
Yep about the same, I take 210mg a day, but Prof has me taking them 60mg morn, 60mg lunch, 90mg at bed. It would be good just once a day but I guess he must have his reasons, will talk to Prof Rowe when I go next.
Thanks, Prof Morgan and his team are really great, and thanks yes AVM FREE WOOOHOOO!!!
Kia Kaha Taiki
DM