Alternatives to Phenobarbital?

[Jerry1665]

My girlfriend has been on Dilantin and then Phenobarbital with success for many years. Currently on Phenobarbital for the past 10 plus years. Last Grand Mal seizure around 7 years ago. However, it doesn't seem to be as effective as it has been and she is looking for an alternative drug with less side effects (sedation & occasional hives).

Has anyone been on Phenobarbital long term and successfully switched to another drug? If yes, what can you tell us about about how the switch went and how are you doing now (side effects, etc.)?

Thanks for any help that anyone can provide.

[ziggidypoo]

Phenabarbital knocks me out completely but only given during bad seizing - not in quite some time. I hope others will be able to help you with this problem. Just popping in to let you know I care.

[skillefer]

Hi Jerry! Welcome to CWE. I've been on Phenobarb for 25 years. The last couple of years, my seizure control hasn't been that great. Just recently I found out that I'm pregnant and my OB /Gyn asked that I be put on Dilantin. The neurologist agreed. I've been on it now for about 5 days and so far no side effects noticed. The neurologist is going to wait till my Dilantin levels are good and then wean me off the phenobarb which might be a bit tricky. Hopefully not. But so far, so good.

[epileric]

Phenobarb is closely related to Mysoline (Primidone). I've been on both but they effected me very differently.

I'd ask the neurologist if that would be good replacement for the phenobarb.

[brain]

Jerry!

Welcome to CWE! Glad to have you here! I was on
and off of Phenobarbital (as well as Mysoline / Primidone),
and it was used in conjunction with other anti-convulsants
(as it was called years ago as we know it now as anti-
epileptic drugs). I had been on Dilantin / Phenytoin the
longest of them all. Unfortunately I had developed a
problem with it where I'm allergic to Phenobarbital, it
was the first anti-epileptic drug on the allergy list.

Out of fairness, I must imply that this med worked, but
I was never on any titration into it, I was slammed on it
and slammed off of it for reasons unknown. I never knew
one had to be titrated on such meds (I do know now since
I've studied up in Neuropharmacology and Neuroscience,
but I am not a Medical Doctor). I was told after have not
been on this medication (before it was put on the allergy
list) that after being on the titration to a point of being
on a high dosage with no results where it landed me in
the ER at the Hospital, I had developed also a resistance
to the medication due to being "on and off" so many times.
I didn't know nor realize that were even possible for these
types of medications, I only knew that it was possible for
antibiotics and certain vaccinations and certain specific
drugs, but I did not think this would be one of them.

I do know that specific drugs can loose its effectiveness after
a prolonged period of time where the titration does have a
need to be increased, but most Physicians revert to looking
for another medication(s) rather than keep increasing the
titration of the same medication(s) due to the increased risk
of side effects, body tolerance/resistance, danger(s) to the
patient's vital (organs) / nervous systems, and so on.

I must stress and put emphasis on this: EVERY INDIVIDUAL
IS DIFFERENT! Some individuals can be on the same drug(s)
for decades and have no problems at all, while to others,
unfortunately, is just the opposite, where one can only be
on it for so long as implied at the above paragraph.

If there seems to be any problem(s) associated with the
medication or medications, then you must consult with
your own treating Doctor(s), for they are the ones handling
and caring you and have your profile (chart) in their possession,
we do not.

Moreover, if you are unhappy with the response, you can always
turn to your Primary Care Physician, and ask him/her to re-
evaluate everything, as they are the "General Overseers" of
your overall well being; and if he/she feels that the Neurologist
or Epileptologist may not be properly treating you, may send
you off for a 2nd opinion ... or ... you can even ask for a 2nd
opinion to a different Neurologist / Epileptologist and what
their recommendations are, or who knows, that 2nd opinion
Doctor may end up being your Neurologist / Epileptologist
who will be properly treating you and more effectively.

In addition, keep in mind - things change as we grow older,
so likewise do the medications sometimes. So what I have
posted is just a small amount to ponder - but sufficient
enough to first start at the home plate - your Neurologist
and go from there and see what comes out of it.

Good Luck!



And feel free to browse around in CWE and make yourself
a home here! This is the BEST ADVISORIES I can offer
for you in regards your concerns about your girlfriend!

[drarvindr]

Hi jerry!
abt the pheno , the problem is that any new drug you try can also have side effects. If the sedation is a problem , ask your neurologist to change the drug , but my is that it takes your body time to adjust to any new medication. If you want to try alternative therapies (not pharmacological) you can try neurofeedback or diet changes. If the two of you are planning to have a baby , i think you should talk to your neurologist ASAP to see the safest possible drug. But otherwise i feel that maybe a dose reduction/increase as necessary may be safer. The other drugs (Dilantin, Tegretol, Depakene ) have many side effects as well , amongst them hirsuitism , anemia, low white cell counts , hair loss , and some knock you out pretty much as much as pheno does now. My point is , in your girlfriend's opinion , is the sedation so debilitating that a new drug is mandatory ? if so then i agree wholeheartedly. But if it's just mild dorwsiness , then it's better to just live with it. The important thing , however is that her seizures remain under control. If the seizure cntrol is inadequate , then you may need a new drug(s).

[Jerry1665]

Thanks to all who have responded. I think we'll have to do some more research on Mysoline (Primidone) versus the Pheno. Also, thanks to Dr. Ramaswamy for the advice on looking at neurofeedback and altering her diet (she eats extremely healthy right now- but, maybe we can improve it). Also, to Dr. Ramaswamy, our prayers go out to you in Mumbai during this difficult time.

As has been pointed out, each person is unique in their response to each drug and other therapies. And, while my girlfriend is able to drive, work, exercise, and live a fairly normal life, there are strong side effects that do affect her quality of life. She is able to fight the constant sedation while on 200 mg of pheno by just forcing herself to keep going and going- but, when she relaxes that will, she goes to sleep in about a minute. We never make it through a movie in one sitting. Her schedule is so hectic as it is- without adding a sedating drug to the equation- that, I really don't know how she does it.

Life is difficult as it is, without adding a strong sedating drug to make it just that much more complicated. My respect and admiration knows no bounds for how she copes with her daily struggle and for those who are less stable on medication and have far worse problems than her.

Again, thank you so much for the responses.

[Bernard]

Jerry, you might have look here: Proactive Prescription for Epilepsy

[skillefer]

Hmmm...Hey Jerry, by any chance is your girlfriend taking her full dose at one time? My doc has me on 32.4 mg 5xday. That way the sedation effect isn't so horrible. Maybe it's not the med, but how it's being taken that's the problem.