What treatments have you tried for epilepsy? What works for you?

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Margarita_k

08/11/2017 at 11:21

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Margarita_k

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Hi everyone,

As you may already know, the goal of Carenity is to help you exchange experiences and opinions, to help each other manage your condition in a better way.

So in this discussion I invite you to share the treatment for eplilepsy that you have to take every day, to be able to compare your experiences with others and to learn more about treatments available.

Don't hesitate to give your opinion if it can help others!

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lesmal

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06/07/2021 at 10:52

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lesmal

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@Sunshine5‍... I hope Briviact is working for you. My Neurologist has now taken me off Topiramate and put me on Zonisamide?

I've been on this only a month now and am still titrating dosages up every 2 weeks. Will see how it goes.

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2021-07-06 10:52:55

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lesmal

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07/11/2022 at 16:11

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lesmal

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@Sunshine5 ... I will be starting low dosage of Briviact soon. Any side effects to be aware of?

I hope you can advise.

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2022-11-07 16:11:17

Sunshine5

07/11/2022 at 16:20

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Sunshine5

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@lesmal

I did not notice any side effects as such. I started on a low dose of 50mg twice daily, then 50am 75pm and gradually building up to 100mg twice daily. Taken since 2015. What are your seizures like? Mine are absences.

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syusuf

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2022-11-07 16:20:20

lesmal

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07/11/2022 at 16:27

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lesmal

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@Sunshine5 Focal seizures. Will be starting on 25mg once daily, then titrating up to 50mg twice daily. Have to do it in 8 week process. I hope this will work.

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2022-11-07 16:27:28

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Sunshine5

06/07/2021 at 12:00

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Hi Lesmal, hope Zonisamide is helping you. I've tried that drug too but didn't make any difference to my seizures.

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syusuf

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2021-07-06 12:00:08

lesmal

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07/07/2021 at 15:45

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lesmal

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@Sunshine5‍... Thank you... Will keep you posted on progress. Stay well.

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2021-07-07 15:45:57

lesmal

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22/10/2022 at 12:19

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lesmal

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Am now on pregabalin and phenytoin but changing over to brivaracetam soon! This will be my 8th trial!

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2022-10-22 12:19:13

lesmal

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05/02/2023 at 14:57

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lesmal

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Update... I've been on Carbamazepine, Tegretol, Vimpat, Lamictal, Topiramate, Zonisamide, and am weaning off Briviact.

I'm still on pregabalin and phenytoin, but focal seizures are still not controlled.

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2023-02-05 14:57:55

Somya.P

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12/05/2026 at 16:32

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Somya.P

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Hello everyone,

treatment for epilepsy can be very different from one person to another, and it often takes time to find what works best.

What treatments have you tried for your epilepsy?
What has helped you the most so far?
And is there anything that has been harder to manage or less helpful for you?

Please feel free to share your experience with the other members. 💛

Take care,

Somya from the Carenity team 🌼

@jilyOlivia @abes232s @katejwill @Robbie130504 @victoria84 @Stevie B @blossom tree @Ltire69 @Pisces @laura41 @Tommy04 @TracyJS @Bonmunster @AccHRGrad2009 @felixcat @david john @dancer @sallysunshine @tattyteddy @Kimbasmum @poppy51 @AndyH72 @Bunnyhollow @Braddo @bri956 @GillianL @Brassgeek23 @Lauracastle @MissEF @Chudster @Stunner85 @Dantheintrovert @Vickylou83 @Charlie24 @Janene @Speech @bobk1892 @Iryna7 @P.raynsford @Trev1lisa @AmyLou @Kaypre @Unaonn @wendyathalifax @Beth85 @Sharmeena @llanarth @Cromy888 @Dede1996 @sallysunshine#

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What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2026-05-12 16:32:50

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P.raynsford

12/05/2026 at 16:48

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@Somya.P myself i am now on 1500mg of keppra and 500mg of carbemazipine twice a day which has my epilepsy under control completly i started on 250 mg twice a day of just the keppra and across several months this was gradually increased but alone my seizures where never under control after a few years of fighting neurologists and a move from london to coventry i was finally given the carbamazipene alongside the keppra and my epilepsy is under control as lomg as i take my medication as prescribed but even a few missed dosses the seizures return with a vengance

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2026-05-12 16:48:41

lesmal

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28/05/2026 at 20:21

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lesmal

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@Somya.P I've just been weaned off levetiracetam after a 12 week process. In the meantime I've been on low dosage of Clonazepam which is to be increased soon. I've tried 13 medications in the last 8 years and my seizures are still not controlled. I'm so fed up with the system and had to wait 18 months to see my neurologist here in Northern Ireland. No one should have to wait so long when one has a chronic neurological problem.

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Les

What treatments have you tried for epilepsy? What works for you? https://www.carenity.co.uk/forum/other-discussions/your-opinion-on-epilepsy-treatments/your-daily-treatment-2040 2026-05-28 20:21:54

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