Rene1027

255d

If anyone has generalized epilepsy and medicine what are you on? My seizures are not improving at all and are generalized tonic clonic (grand mal) every time. I want to change medicines but have tried 6 (not at one time) with no luck. I would like ideas to ask about. Side effects that you experience would be helpful too, to determine if it could be worth it for me.

advertisement

Top reply
    • MonarchL

      242d

      I'm currently on zonisamide and phenobarbital this started to do less and less for my seizures so ive recently been put on zonisamide as well for my seizures and so far things are improving I went from on average a seizure a week to one or two a month but the side effects are starting to show up so nothing serious so far ,so fingers crossed

    • rip_ash

      255d

      I was on Kepra for a while. Got off it a couple years ago, now I'm seizure free :)

      • Rene1027

        255d

        @rip_ash I was on that first. It helped seizures but the side effects were bad. I was depressed to the point of my parents being concerned (and they think mental illness is fake)

      • Rene1027

        255d

        @rip_ash congrats on being off it and seizure free though!

    • TinyThing

      254d

      Zonisamide has worked well for me but a very common side effect is a loss of appetite so you may need more regular check ups if you are already quite slender. I've dropped from obese to a little overweight so I don't mind it! Also on lamotragine which had no noticeable side effects but that's not the case for everyone of course. Things are under control after not being controlled on sodium valproate, valropic acid, clobazam and kepra

      • Rene1027

        253d

        @TinyThing I have tried keppra, lamictal, zonisamide, and briviact. Currently on clobazam and vimpat with no luck.

    • Taylor128

      252d

      I was on different epilepsy medications from the age of 10 to 27. I have tried Zonegran , keppra, lamictal, and vimpat . All of those medications still caused me to have break through seizures along with horrible memory problems , anger issues, anxiety and and depression. At the age of 27 my insurance lapsed and i couldn't afford $1,000 for a 30 day supple of pills. So i searched online to see if there was possibly anything that could hold me over until i could get back to my neurologist. I found Charlottes Webb CBD oil. Now- i will be 32 at the end of this month and I have had 1 seizure since i started taking it . My depression ,anxiety and anger is almost non existence and my memory is soooo much better . I still am not allowed to drive and I can't work due to other medical conditions. I know cbd oil doesn't help everyone and not everyone has access to but it might be worth checking out and trying. And def. Speaking with your neurologist about it. If not, maybe explore the opion for a VNS implant. You probably qualify for it. Also- i have grandmal seizures and petite mal (absent ) seizures. And i have taken EEGs since being on the CBD and i still def. Have seizure activity in my brain.

      • Rene1027

        252d

        @Taylor128 I actually already have the VNS. Had it since 2019 but still have seizures even with that and medicine

        • Taylor128

          251d

          @Rene1027 im sorry ,maybe try cbd if u can!

    • Taylor128

      251d

      🙏

    • strugglebus

      248d

      I also take Lamotrigine for my grand mal seizures, and Zonisamide for my myoclonic epilepsy. I'm sorry they did not work for you. I hope you find something soon

    • MonarchL

      242d

      I'm currently on zonisamide and phenobarbital this started to do less and less for my seizures so ive recently been put on zonisamide as well for my seizures and so far things are improving I went from on average a seizure a week to one or two a month but the side effects are starting to show up so nothing serious so far ,so fingers crossed

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion