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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 27/04/2025 at 05:04

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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 27/04/2025 at 05:04

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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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leigheablett

Edited on 07/04/2025 at 16:59

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I try to cope by making sure I have daily structure and routine around me every day. I aim to walk for at least an hour to get outside with my dog for fresh air and mental health stimulation. I write a diary for my mental health at the end of every day to vent my feelings and thoughts.

I find notebooks/whiteboards for reminders useful to set to do lists etc on my mobile or you can buy whiteboards/notepads to physically see and help complete tasks to complete each task at a time, pill boxes and using Alexa to remind you to do things, setting alarms via your mobile etc whatever works for you to get you through each day, is vital that you have the resources help and ALWAYS ASK FOR HELP wherever possible.

I find starting small at the beginning of the week helps to build up by the end of each week as my energy can drop anytime. Little and often is the best way to keep going and prevent procrastination, but taking breaks in-between, don't push to hard unless you feel you can.

If possible get away from home, while the sun is shining, go out for the day or an hour or two! It's break from the norm.

We all know there are times where pushing ourselves can be the enemy and there is always someone or something who wants/needs us.

Yet eventually everything gets too much but we persevere in ignorance, only having 1 pair of hands to carry the load, to cope to recover, to hug, to love, to cook, to clean, to care, until eventually, all that juggling isn't so easy all the time.

For the person dealing with epilepsy, your brain and body shuts down like a battery drained of nothing left to give and it's not always the person with epilepsy it's also our friends, carers and family from the pressure pain and stress watching the torture we go through.

I know how it feels having temporal lobe epilepsy since having meningitis from 18 months, now discovering I have Functional Neurological Disorder when I I suffered paralysis after waking up unable to move from the neck down, admitted to hospital for 3 weeks and told my brain had shut down. Stress, and the rollercoaster stomach of sickness, the awful pangs of anxiety and that feeling of horror and dread (like in the harry potter movies where the dementors suck all of your soul and all you have left is this sick feeling in seconds before your unconsciousness?) then you wake up faces hanging over you, echoes of voices asking if you're ok, can you hear them? While you try to gather your senses, listening to whatever is around you, adjusting your sight, then trying to make sense of what, where and how you got to be where you are. Then reality kicks in, it all makes sense. The pain from a swollen tongue, body aching and feeling like lead, as you realise what happened. Then you slowly adapt, accept and begin to cry and wonder why this keeps happening to you, even though your doing everything you have to do to try to make it stop.

Eventually you heal, recover and repeat everything above but time is a healer and makes you stronger to keep going, with resilience, determination and support you will find yourself again x

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2025-04-06 23:37:53

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lesmal

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07/04/2025 at 16:51

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lesmal

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@leigheablett After Cenobamate I was put on Fycompa. Same side effects of irritability and tiredness. Then tried Zebinix which has done the same with low sodium. My neuro is now trying Keppra and I am increasing dosage every 2 weeks. On Vitamin B6 (50 mg) at the same time. I just hope this works as I am running out of combinations to try.

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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 2025-04-07 16:51:35

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