Epilepsy Talk

It’s YOUR Turn! | November 25, 2022

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  1. Do all anti-seizure meds cause kidney problems? Has anyone else been diagnosed with chronic kidney disease? I saw a kidney doctor a few years ago. She said that I didn’t have chronic kidney disease at that time. My blood test results from a few months ago, showed that I now have chronic kidney disease.

    Liked by 1 person

    Comment by jerracy — November 25, 2022 @ 10:19 AM

  2. I had been on Keppra, starting in 2008 then switched to its more powerful analog, Briviact, in 2019. Suddenly, I started having problems with kidney stones. I am not a fan of the family of -cetam drugs. As it turns out, they were almost certainly responsible for years of partial seizures.

    Liked by 1 person

    Comment by Lawrence Olsen — November 25, 2022 @ 10:39 AM

    • April 2018 I started taking 50 mg Briviact with 400 Vimpat, I have JME, for 49 years, I was diagnosed with pancreatitis in September 2018, bringing up blood in flem, pain in back, temperature, [scan nothing except kidney stone, no gall stones, had been off alcohol for 3 years anyway?] out of hospital, [kidney stones passed up] colds, colds, …. then January same symptoms again? Scanned again, kidney stones again! No pancreatitis! Do Briviact cause Kidney stones? Briviact makes me hyper active, thus hard to get to sleep. Would it be an idea to take 25 mg Briviact 200 mg Vimpat at night, 25 mg Briviact 200 mg morning instead? Thus easier get to sleep and less likely to get Kidney stones? {I have not had a seizure since before taking Briviact, so it could be a major break through for me?} https://healthunlocked.com/epilepsyaction/posts/139958888/briviact-and-kidney-stones

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 25, 2022 @ 12:03 PM

      • In my case, I finally found a neurologist who listened to me. Back in 2012, I had weaned down from 2000mg/day of Keppra, post-operative, to 825mg/day. That low a dose is sub-therapeutic, yet I had very very little partial seizure activity and no tonic-clonics at all. Unfortunately, after I left the area and was assigned a new neurologist, he immediately increased my Keppra intake to 1500 mg/day. I started having more partial seizures, so he increased my dosage again. It seems that, because the “protocols” say to increase Keppra if the patient is having seizure activity, the neurologists are hard-wired to do so! Long story short, Keppra and Briviact are NOT good for everybody! If you think the Keppra is causing kidney problems, get your doctor to prescribe you a different anti-convulsant, with the goal of getting you up to a therapeutic level of the new med and then wean you GRADUALLY off the Keppra. I am now completely off Briviact and on Phenobarbital. My partial seizures have essentially vanished. I hope what worked for me works as well for you!

        Liked by 1 person

        Comment by Lawrence Olsen — November 25, 2022 @ 6:09 PM

  3. Okay I’d love to vent.I’ve been spacing out like a fiend as of late. I thought it was my anxiety causing derealization and went to the neurologist PA. I didn’t want to go the therapy route because they attribute it to childhood stuff and don’t understand the physiological issues from epilepsy and the fear of seizures. But, disappointingly, they still recommended antidepressants, which I refused. My spacing is getting worse, even when I’m not anxious. The other day I thought I was going to have a partial seizure (haven’t in several years). I get this torrent of spaciness washing over me and I just beg in my head to please not let it happen in front of the person I’m talking to. I swear I can feel the medication holding it back like a dam. It looks like I’m watching a little television and changing the channels while the volume goes down. I see the PA again Wednesday and I’m afraid she’s just gonna tell me it’s anxiety and I need another drug ☹️ which I don’t want. I took those drugs when I thought I was having panic attacks, before they were diagnosed as seizures. They never helped me. Oh well, wish me luck that they can suggest something besides antidepressants.

    Liked by 1 person

    Comment by Hetty Eliot — November 25, 2022 @ 5:07 PM

    • Hetty, you’re really in a tough spot because it DOES sound like the anxiety of anticipating a seizure.

      Just a wild guess. Could it be a deja vu issue?

      How about trying a neuro psych?

      Other than that, I’m stumped.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — November 25, 2022 @ 5:27 PM

      • I know a lot is anxiety but I usually feel that in my chest. This feels like when a “jamais vu” was about to hit but I swear I can feel it being stopped. But it’s miserable spacing all the time. The channel switching happens even when I’m not anxious.

        Liked by 1 person

        Comment by Hetty Eliot — November 25, 2022 @ 9:54 PM

      • This was kind of a while ago, but they wound up upping my dose 25mg twice a day. I think it’s working! I feel more focused. Imagine trying to tune in a staticky radio station and it becomes a bit clearer. I think the increase made me a wee bit crabby but I think that effect is wearing off.

        Liked by 1 person

        Comment by Hetty Eliot — December 13, 2022 @ 4:33 PM

  4. I just wanna give Thanks for you Phyllis :D….. thank you for your effort and time put into this wonderful place for support and information!

    Liked by 1 person

    Comment by Aaron Holmes — November 25, 2022 @ 8:56 PM

    • I want to say the same thing…THANK YOU PHYLLIS …..as my anxiety was driving me nuts and I wish I knew about this site years ago though I’m glad I know about it now. We are all unique individuals with a disorder that might be helped with a AEDs and a handful of sunflower seeds but we enjoy laughter; oil paintings; sunny days (not right now in Portland, Oregon). My memory was so poor when I was growing up I didn’t recall what a teacher said but I did remember the name Alan Alda so I sometimes see Mash – funny episodes on youtube. Thank you for helping us!

      Liked by 1 person

      Comment by leonchavarria — November 29, 2022 @ 2:56 PM

  5. Having tried to deny & cover up my seizures & medical hardships from family members, friends & coworkers for long time, this forum has been & still remains the only personal outlet to my struggle with epilepsy.
    In the process of spilling my heart out & deep personal struggle with my seizures, fear & frustrations on this forum, I learned how cope with my neurological disorder from all of you, sharing your experience for me to have deep understanding on how to accept my difficulties & continue to seek remedy to my neurological disorder, instead of trying to deny & shove my hardships under the rug.
    Therefore, it’s my turn to recognize & appreciate your contribution to my wellbeing.
    Thank you. 👍

    Liked by 2 people

    Comment by Gerrie — November 25, 2022 @ 10:26 PM

  6. Hello,
    periodically I find myself in a depressed state, whether I will again seek the correct treatment of epilepsy. In Bulgaria, the nevlovka makes me share information via Viber, about how many seizures I have. You have an EEG twice a year. And the drugs are not completely free. There is an extra charge for them. He doesn’t want me to take the old treatment regimen where I only had one month absence with no loss of consciousness, just stomach aura. However, I do not give up, I also started a low-carb diet. In our country, healthcare is at a low level.

    Liked by 1 person

    Comment by Goro Dimitrov — November 26, 2022 @ 2:25 AM

  7. Hi, I’m just looking for some advice. I started epilim 9 years ago when I was diagnosed at the age of 13 but due to insomnia, I was changed to Lamictal as I’ve sleep-deprived epilepsy. I take 225mg at night and 200 mg in the morning. I had 2 seizures yesterday and I was just querying about changing to Keppra. How long does the transition from lamictal to keppra take? has anyone got any positive experiences?

    Thank you

    Liked by 1 person

    Comment by elisha — November 26, 2022 @ 8:22 AM

    • Elisha, Many people have much to say about Keppra. Some good. Some bad. Here’s a sampling:

      Keppra — What People Are Saying https://epilepsytalk.com/2021/03/11/keppra-what-people-are-saying/

      As for transitioning, it takes 4-6 weeks for the new drug to completely cross the blood/brain barrier. Please do not wean yourself off or titrate the new drug by yourself. No matter how frustrated you are.


      Comment by Phylis Feiner Johnson — November 26, 2022 @ 10:07 AM

      • My neuro put me on Lamictal and when I continued to have periodic seizures he would just increase the dosege. I switched to an epidologist [neuro specializing in epilespy] and he redused the Lamictal from 600 mg [300 at night, 300 morn] to 200 am and 300 pm and added Zonasamide ; 400mg at night. That was 5+ weeks ago and all is going well. Additionally my side effects from Lamictal have been reduced.

        Liked by 1 person

        Comment by David Hall — November 27, 2022 @ 11:00 AM

      • Hi I’m just wondering if you can have an alcoholic drink while on lamictal and keppra?
        Thank you

        Liked by 1 person

        Comment by Elisha Smith — December 14, 2022 @ 5:41 PM

      • Alcohol

        There are two questions that have to be considered when the question of alcohol use and epilepsy comes up. One is the effect that alcohol could have on the medicines used to control seizures. Alcohol can be dangerous when mixed with sedative drugs and can cause coma, or even death. The other question is whether the alcohol itself will cause seizures.

        Large amounts of alcohol are thought to raise the risk of seizures and may even cause them. When you drink alcohol, it may temporarily reduce seizures for a few hours, but then increases the chances of a seizure as the alcohol leaves your body.


        Comment by Phylis Feiner Johnson — December 14, 2022 @ 5:54 PM

      • Thank you

        Liked by 1 person

        Comment by Elisha Smith — December 15, 2022 @ 6:07 PM

    • My neuro started me on Lamictal and when my seizures did not stop he just increased the dosage. I changed to an epidologist [neuro specializing in epilepsy] and he lowered the Lamictal dosage to 200mg am. and 300 pm., added Zonisamide of 500 mg pm. While on 5+ weeks that is working just fine….no issues. And the side effects from the Lamictal have been reduced a lot. I am now 4+ months seizure free.

      Liked by 1 person

      Comment by dhallofnc — November 27, 2022 @ 11:07 AM

  8. Goro, perhaps this article will help you:

    Three Anti-Seizure Diets That Could Change Your Life… https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/

    I hope it will…

    Liked by 1 person

    Comment by Phylis Feiner Johnson — November 26, 2022 @ 9:57 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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