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KEPPRA from Brain Surgery - Siezure free - still need meds?

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Posted 3/23/2007 11:19 PM (GMT 0)
20 years ago I had a BENIGN brain tumor removed and have been on meds ever since. My wonderful nuerologist (I say that sincerely!) had me on Tegratol, Dylantin and Mysoline but all affected my WBC level. about a year ago I started KEPPRA but I keep pondering DO I REALLY NEED medication? I have done EEG's over the years and there does appear to be abnormal brain wave activity but unsure to what degree, etc. We would love to take me off meds entirely but I am so scared to experiment on this and risk a seizure. I have only had TWO in my life and both were right after surgery. HAS ANYONE been on meds and slowly decreased dosage and now are on nothing? Anyone? Am I crazy to even consider it? Thanks for the advice...
Posted 3/26/2007 6:07 AM (GMT 0)

  mc39 as long as your seizures are "gone"then getting off your meds.is an option,BUT that is something you need to talk with your Neuro.about.I'm 34 and about 20 years ago I grew out of my seizures at the age of 14.For about 2 months I was seizure free,THEN one day I started having them again.I had my right temporal lobe removed back in 2000 to help with my seizures,and it helped ALOT,but I'm still taking 4 different meds.a day twice a day(20 pills a day).My seizures are so much better as long as I get enough rest.

 So I guess what I'm saying is if your Neuro.would like to try to start "winging"you off your meds then thats great,BUT I know taking meds.can be a pain sometimes,but if they are controling your seizures "don't mess with anything if it isn't broke"unless your Neuro.says to.      Good luck,

                                                   Michael

Posted 4/2/2007 4:10 AM (GMT 0)
To Micheal...

Thank you so much for your post. I wanted to hear from someone in a similar situation...I am so afraid of the long term effects of meds but scared to death to be out rollerblading or driving my daughter in a car, etc. and have a seizure occur...I guess I was thinking "if you get thru 6 weeks with no seizure I promise you won't have one...."...but I am thinking this cannot be the case. So my question to myself is do I take the meds for quality of life (i.e no seizures) or do I go off meds and always have a fear lurking in my brain that what if I am doing X and a seizure occurs,e tc. If you were me - what would you do knowing what you know now? Would you chance it or would you not? thanks melissa
Posted 4/12/2007 4:55 PM (GMT 0)
Hi Melissa, I had a RTL in 2002 (right temoral lobe lobectomy) I have been seizure Free since. I will celebrate my 5 year anv on Jun 11th. I am still taking lamictal, but just 100mg twice a day. I don't want to risk going off the med and seizures starting all over. It's my security blanket, and my back up. I know if I had a seizure while off the meds I would never forgive myself, I don't want to live that life again. I dealt with seizures (complex partial) for over 25 years. It feels so good to be able to drive, and have my indepdence back. Good luck and may God keep you safe.

God Bless,

Mercyme/Cindy
Posted 4/12/2007 5:41 PM (GMT 0)
Thank you Cindy for the kind words. I met with my nuero a few days ago and he was on the same thought as you. He has had several patients do fine with no meds but several that have not.....To be honest, I am a little bit of an anxious person anyway so he knows me quite well and pretty much said every little thing or sensation I would become paranoid that this was going to be a seizure. I think he summed it up best when he said I might be off medication but the worry of "what if today is the day" would never leave my mind. I am an active person and to think I couldn't rollerblade, run or swim with my child well it just wasn't worth it in the end. I like how you called it - your security blanket. That is a great way to put it.....Thank you!
Posted 4/13/2007 8:29 PM (GMT 0)
Hi,

I have never been taken off meds but my mum has. When she came off her meds, there was very little to risk. Her job would still have been secure, she didnt drive and she didnt take part in any activities that would be 'dangerous' if she had a seizure. She came off meds and has been absolutely fantastic. On the flip-side, I think you have made the right choice. If taking the meds is not a big deal for you then it seems a bit risky given the amount of things it would affect if 'the day' came. I used to dream of the day that I would come off meds but as I have got older, (I am only 22yrs old now btw!) coming off meds is not such a big deal for me. It is more important to be sz free. If I have to take Tegretol for the next 50 yrs then so be it!

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