Does anyone have drug-resistant epilepsy?

By My Golden Years Latest Activity September 28, 2010 at 3:53 pm Views 2,783 Replies 5 Likes 2

My Golden Years

A friend of mine is struggling with her epilepsy. The doctor's have called it drug-resistant epilepsy. Which I suppose means that they can't control her seizures with the pills they've got today.

Is anyone else struggling with resistance to epilepsy drugs? Have you found anything that works? has anyone tried the nerve stimulation or implant thing?

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Replies (5 replies)

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  • faceinthecrowd
    faceinthecrowd January 21, 2014 at 4:59 am   

    I know im pretty late on this but I have epilepsy and I take Lamictal which Helps me a lot. as long as I take my medicine, I don't have seizures so maybe look into that?

  • MissPuff
    MissPuff December 8, 2010 at 1:53 pm   

    I am drug-resistant, not just for epilepsy, but numerous other health conditions. I had a major attack yesterday (complex partial) & ended up in the ER for 3 hours & I still haven't recovered today. Currently I am taking Vimpat & Valium. I've taken about everything else. I have 5-6 types of seizures. This past Fri & Sat, I was having myoclonics that lasted about 30 secs each, every 1-2 minutes, all day long both days. Then Sun, I had two sensory seizures in the morning and the myoclonics started again in the afternoon, but not as frequent. I called my neuro on Mon to see what I should do when this happens. He didn't call until yesterday (Tues) while I was in the ER, to tell me he felt he could no longer treat me & that it was obvious that the Vimpat & Valium are not working. He wants me to start seeing an epitologist. The ER doc told me to take an extra Valium, if sufficient time had passed after taking one. He said one Valium every 8 hours.

    I have a friend who had uncontrolled seizures for years & they implanted the VNS & she is doing great now. I don't know if that would work for me because of the different types of seizures I have. And I'm pretty sure brain surgery to remove affected lobes would not work because all lobes are affected with my seizures. But that is something I will have to wait to discuss with the specialist.

    Epilepsy can be a difficult thing to treat. As far as the VNS, yes it does work for some people.

    I am assuming that since you are aware of your friends difficulty, that you have educated yourself on how to help her when she does have seizures & that you are aware of how serious epilepsy is. My brother's wife died almost 2 years ago from a seizure that caused a fatal heart attack. She dropped dead in mid-sentence with no warning signs. My brother has been very concerned about me this past month because my seizures are getting worse & they give no warning signs either. He wants someone here with me round the clock. It really isn't a possiblity for me, but yesterday scared all of us pretty good. My husband, son & I didn't take my situation seriously because my previous & current neuro's never talked about the seriousness of them, which is very irritating. I've had epilepsy since I was a year old. I want very much to find something that will help. But to be honest, I don't know if there is anything for me.

    I hope your friend can get the help she needs & I hope you continue being the good, helpful friend she needs.


  • liquidvamps
    liquidvamps November 29, 2010 at 2:31 am   

    There is a non medicated treatment that I myself am looking into… It isn't easy remembering to take my meds and I don't like the symptoms… I'm not sure what it is called but your neurologist can implant a device that is similar to a pacemaker just under the skin and you would take a magnet like item and wave it over the device just after you feel like you may have a seizure… You should have a discussion with your doctor about it…

  • MissPuff
    MissPuff December 12, 2010 at 6:29 pm   

    liquidvamps, what you describe is the VNS. It is implanted in the left upper chest just under the skin, with an electrode connected to the vegus nerve. Supposedly it catches most seizures, but if it doesn't catch it, the hand held magnet is run over it. While the unit itself is non-medicated, it is usually used in conjunction with AED's. So, even though you don't like taking meds or have trouble remembering them, you will probably have to still take something.

    I have trouble remembeing meds too. I don't know if that is just part of the epilepsy or not. There are things you can do to help you remember to take them. Have someone set up an alarm on your watch, cell phone or computer that will sound off when you need to take your meds. I also have all my meds put in a pill box - morning, noon, dinner & bedtime for a week at a time. The hard part is trying to remember which pills go in which compartment, but if you aren't able to do this yourself, ask someone to set it up for you.

    As far as symptoms or side effects from AED's, some can be merel annoying, but some are very serious. Discuss the symptoms with your pharmacist. He/She will be able to tell you if it is something to be concerned with & whether you should contact your doctor. My pharmacist has been my biggest advocate because my doctor didn't return my calls sometimes until my pharmacist got involved a couple of times.

    I hope this advice helps you & others. Let us know.


  • riverkings
    riverkings October 12, 2010 at 10:29 pm   

    My daughter has drug resistant Epilepsy. It is a syndrome called Lennox-Gastaut syndrome. We have used the ketogenic diet in the past and it worked to reduce her siezures for a while. the only meds that we have found that made much of a difference is Felbatol and a new drug called Banzel. She also has the VNS implant. I do think it has helped some. We never have found anything that has completely controlled her seizures. How old is your friend? What types of treatment is she using?