600 mg lyrica has helped more than trileptal or lamictal.I had always heard lyrica was an add-on.Anyone else on lyrica only? BTW I have simple partials and complex partials.I was diagnosed with left TLE.

Dear Mel,

currently, according to the Lyrica monograph at http://www.rxlist.com/, Lyrica is indeed still only approved by the FDA for use as an adjunctive medication.

However, remember that approved indications for meds are based on statistics emerging from the studies carried out... i.e. if a sufficiently large proportion of people respond to a drug as monotherapy then it will be approved for that. but you, as a single individual, may in fact respond to the drug... if Lyrica alone does stop your seizures, then for you, monotherapy with it is possible.

I did find a note on the Lyrica page at www.epilepsy.com regarding possible monotherapy:

http://www.epilepsy.com/medications/b_lyrica_useWhen a drug is prescribed alone but is only approved as an adjunctive, that is called "off-label" prescription. Do not worry as long as the med works. Off-label scripting is done quite often because approvals are sometimes not sought, or come much later than scientific knowledge... and again, they are statistic-based anyway.

This may interest you also - I read that Pfizer was trying to establish a monotherapy indication for Lyrica, and found this study (by Pfizer, started 2008... looks like it is ongoing):

http://clinicaltrials.gov/ct2/show/NCT00596466
It looks like the study targets patients with 2 particular types of genetic Epilepsy, specifically pyridoxal 5'-phosphate-dependent epilepsy and
pyridoxine-dependent epilepsy.

There could possibly be other types of epilepsy that respond to Lyrica monotherapy as well... i didn't delve beyond this... mostly wanted to give you some feedback.

i hope this is reassuring to you, and, above all, that you remain seizure free on Lyrica!!!

~ waves ~

Hi Mel,
I'm really happy to hear that Lyrica has helped you with your seizures. I know when I tried taking it for my complex partial and absence (petit mal) seizures it didn't help me in the least. I wish you only the best of luck while on the Lyrica and I'm greatful that you don't have to take so many AED's (Anti Epileptic Drugs) to stop your seizures. Here's wishing you only the best of luck and May God Bless You!

Sue

Thank you so much for your knowledge and caring,supportive feedback.It helps tremendously.

I am glad. Stop in when you can and let us know how things are going, k?

~ waves ~

Hi Its Mel239 again.I posted that 600 mg of lyrica of lyrica has completely helped inside my home,Unfortunately,I have been somewhat housebound for over a year.I have 3 young children at home and one in college.The college student takes me out once a week for items I cant order on the internet.Going to storesmakes me feel funny.Peoples hands strech out and then they fade away.I have to keep my son close to me and I feel other shoppers are trying to take what I want.I cant work or drive and have been waiting on social sec for year and half.Anyone else get these weird paranoid feelings around strangers? I just want to go home where I am safe.I cant even get the mail if mailady is still on my road.I feel I am losing my mind.

Hello again Mel,

well first of all, stuff like this - the paranoia - mood or thought disturbances - can happen as a side effect of AEDs. I have knew a person who also had paranoia and seizures, where it seemed sometimes that the paranoia was due to emotional changes caused by the seizures themselves (as opposed to the meds). The situation was unclear however - as the person in question may indeed have had a coexisting psychiatric condition which, i am guessing, you do not.

Regardless of the reason it is happening, it needs to not happen. It isn't good for your brain to have thought disturbances (which is what paranoia is) any more than it is for it to have seizures.

Please talk to your doc, ok? You need to report what is going on to your doc. Most likely (s)he will want to switch you to a different med unfortunately. (i've been paranoid before, fwiw, and i do know how perfectly horrible that feels! )

As for the stretching out of hands. you say stretching, not reaching... am i interpreting correctly that that is a visual phenomenon, and not a thought? That sounds like it could be macropsia (where things start to look bigger, like you're zooming in). Macropsia can happen in simple partials. It is possible that something in the store is triggering seizures, but obviously the Lyrica is not enough to stop them.

In any event, please report this to your doc as well.

I am sad to hear the Lyrica is not working out so well. Being housebound is not a great quality of life and i'm hoping you can get another med solution that can help you with seizure control without messing with your mind.

Best wishes to you!

~ waves ~

Thanks so much for your input.I have been so weird lately.My boyfriend says i'm flat--no emotion either way-and he is very upset because I have no desire for sex and I avoid physical contact that might lead to it.I told him it might not be a side effect of any med,just a side effect of epilepsy and personality change-he is not happy!

Please call your doc right away...

and tell him everything... the hand stretching experiences, AND flat affect, paranoia, lack of sex drive ... plus ANY OTHER emotional or cognitive symptoms or apparent changes in personality that you may not have mentioned here. Include what your boyfriend has noted in you. When it comes to mood, others are often better observers of changes than we are ourselves.

There is a good chance it is from the AED if you've never had anything similar before while untreated.

But regardless, these things absolutely must be investigated and if it is not the Lyrica and something else is going on with you, it is most likely treatable. But you need to go in quickly, i have a bipolar dx not E - i am aware of psychiatric symptoms and their impact. Even without an underlying pathology, these symptoms are not good for your mind, so please hop hop to the doc doc, ok?

And, please let us know what happens.

hope you feel better very soon!

~ waves ~