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How to cope with epilepsy?

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Pixiecookie

11/12/2017 at 01:07

Pixiecookie

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how you live and cope with this

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lesmal

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17/03/2021 at 16:54

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lesmal

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Good to hear from you. I've been on 25mg twice daily and now had my 5 day EEG video monitoring done. Just waiting for results and for Neuro to make a decision. Side effects are still the same, if not worse. No progress and just had 3 days of focal seizures 3 weeks later.

I'll be asking for a change when I hear from him.

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2021-03-17 16:54:00

lesmal

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Edited on 18/09/2023 at 17:32

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lesmal

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I have learnt to live with it for 50 years now since the age of 16. Acceptance is essential, staying positive is important, and having patience and understanding is vital!

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2022-12-06 09:19:21

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Sunshine5

18/09/2023 at 17:19

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Last activity on 17/11/2024 at 19:39

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@lesmal I too dont feel anything more can be done. I had intractable epilepsy and multiple AED resistant. Surgery helped alot but despite being on 3 meds rather than 2, im not free from seizures.

I am still grateful for having far fewer seizures now than before. What baffles me that my Epilepsy Specialist knows the possible side effects of Cenobamate but does not know if it will reduce my seizures in anyway.

If he cited Data then it would improve my confidence in his intention to prescribe it.

I havent approved taking it yet, still waiting for his letter.

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syusuf

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-09-18 17:19:26

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lesmal

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22/08/2023 at 10:53

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I have focal seizures every 4 days. As long as I try and control my triggers and stay safe is most important to me. One must accept one has epilepsy and take one day at a time. Staying positive is vital.

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-08-22 10:53:38

lesmal

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15/09/2023 at 10:58

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lesmal

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I'm about to start my 9th trial medication, cenobamate. I've had my 50 years of epilepsy in chunks now and got to the stage where I do not want more medication. My seizure pattern has not changed, so why take more meds when they don't work?

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-09-15 10:58:38

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Sunshine5

15/11/2023 at 13:09

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Last activity on 17/11/2024 at 19:39

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@lesmal I have received a letter from Neurology that I have a face to face appointment. As much as I would like to feel reassured by my Drs positive response on the effectiveness of Cenobamate, I still have my fears of side effects. Having read about your experience, I am not entirely sure.

Did you start Cenobamate on a low dose & gradually increase?

I've read that starting dose is 12.5mg and can go up to 400mg. I think that is a very high dose but I guess everyone tolerated it differently.

I think my Dr is attempting to control my seizures completely, which is what I would want ideally. Experience has shown that in doing so, some patients become more ill than others on the same medication.

I also suspect my anxiety is connected to my medication and this is listed in the information leaflet on all the medications I take. Epilim can be treated for Bi Polar , a form of depression. I don't have bipolar by the way.

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syusuf

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-11-15 13:09:11

lesmal

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25/12/2023 at 16:02

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lesmal

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@Sunshine5 I've just seen your response only now in December. I stopped Cenobamate after 6 weeks. Regret it gave too many side effects. I saw my neuro 12th December and he's given me clobazam for the days in-between my seizures. I haven't tried it yet. Many AEDs can cause anxiety, so make a note of any side effects when trying a new medicine. I've opted not to take another medication for the time being. I'm still on Phenytoin.

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-12-25 16:02:01

Sunshine5

26/12/2023 at 15:53

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@lesmal , sorry to hear about your poor experience with Cenobamate. I have been on Clobazam started 9 years ago in 2014. It's a once a day 10mg tablet. I increased to 1.5 tablets later on (having to cut the 2nd in the score of the tablet in the middle). It is known to help with anxiety and it has helped with reducing my seizures. In 2018, I was also prescribed Briviact (a lso called Brivarecetam) starting 25mg BD and now on 100mg twice daily.

I take Epilim too and as my seizures have reduced from 5 Complex Partials a month to 3 a month this year overall, I have reduced Epilim too. I am considering a 2nd opinion and will prior to that ask my Specialist the following qns in January 2024:

Are the side effects of Cenobamate apparent on a low dose or as you increase?

Do they usually (side effects) lessen over time?

Based on your experience Lesmel it appears that the side effects were intolerable in a short space of time.

I have such concerns because I have endured major side effects when I was prescribed Perampanel at 6mg daily in 2013, causing dizziness, irritability and bed wetting and deep sleep after dinner when watching TV.

I stopped it after 6 to 8 weeks even though it stopped my seizures, the side effects outweighed the benefits of seizure control.

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syusuf

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-12-26 15:53:47

lesmal

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26/12/2023 at 20:17

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lesmal

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@Sunshine5 I'm having seizures after 7 days, clusters for 3 days then another break of 7 days. At the moment I'm having them daily but got low sodium at the same time. My sodium went down last week. I've asked for a 2nd opinion in the meantime also. I am waiting for my doctor to process it.

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-12-26 20:17:20

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