How to cope with epilepsy?

@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.

@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.

@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.

@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.

@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.

@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.

@Somya.P

How do you cope with epilepsy in everyday life?

I have a routine set in stone when managing my meds. When I wake up, as long as it's not before 6am, I take my meds, and then my night meds I'll take before I go up to bed, or have them in a handbag if I'm going to be out at the time I'm due to take them. Because I'm sleep sensitive, I make sure to have a nap during the day too@

What helps you feel safer, more stable, or more understood?

When people remember what I've told them, and what they should do. For example, my husband's best friend had a seizure when it was just us 3. I immediately went into Emergency Mode Charlotte, put the friend into a recovery position, had my husband start a timer on my phone, and wait for his friend to come out of the seizure. I had to explain what abd why I was doing the actions when it was just us 2 on our way home. I'm thankful husband remembered what I told him to do when one night my usual simple partial seizures turned into generalised. I had one, and I remember walking from the bathroom to our bedroom, calling out his name. Next thing I know, I'm waking up in bed! Abd the time I had my first status epilipticus event. We were at a friends' house when I had my first status epilipticus. I had my aura, where I really wanted to vomit, and the next thing I remember was me waking up in hospital. I struggled to remember which medication I was on, or even the word "commode."

And what advice would you give to others living with it?

Set up your ICE contacts, and put them on your phone's emergency call button (I know Samsung users can set it up where you can call them from your lock screen). Add medication you take and dosage, if you're allergic to anything, any other illnesses (if you have them). Don't be afraid to let people you've just met know, and how they can help you when you have a generalised seizure. You don't have to give everything. See attached images of what emergency staff can see.

@cwright17 Hey there! Thank you for such a detailed reply. 💜 It sounds like you've developed some really thoughtful strategies for managing epilepsy day to day, especially around medication routines and making sure the people around you know what to do in an emergency. Have you found that people are generally receptive when you tell them about your epilepsy, or do you sometimes have to overcome misconceptions first?

@Somya.P Thank you for your reply ❤️ I do like to tell people all I know about medical stuff. Even being in hospital, doing my copaxone (MS DMT) injections, and having student doctors watching me and asking questions. One of them might go on and become a neurologist ❤️

I have found people more supportive when I tell them I have epilepsy, and then what to do if I were to have a seizure. I know that, if I'm out in public by myself and someone's got first aid knowledge around me, I'm able to not worry.

I have carers coming 3 times a day Mon-Fri when husband's at work. I've told them what to do if I were to have a seizure. However, I know my aura, so if I'm alone, I can get myself into the recovery position. I think husband telling me, after I threw up into the toilet and asked for a drink of water to clear my mouth, he saw my face looking like I was having a stroke! So, obviously, he got me into the recovery position and sat with me until it ended. That seizure was because I had urinary retention, couldn't properly sleep for a few nights because of pain, and I didn't have any catheters that I could do myself. I have MS (can't remember if I said that), so all my healthcare teams knew it would be in my best interests to have a supply of "self catheters" if it were to happen again. I've put a couple in my bag, incase I need one when I go out by myself, but I've hardly needed to use one since then.

Make a note of your auras! Make a note of the symptoms of the auras! Make a note on what triggers your seizures, because we're not all light-sensitive 👍