I've just got out of hospital after having about 7 seizures on Wednesday, had my 1st seizure out of the blue in January 2022 (I was 49)and my neurologist said that anyone can have a seizure and that I should rest at home.
Then in June I had 3 more in quick succession (one in the ambulance), neurologist diagnosed me with epilepsy then put me on kepra starting at 250mg x2 rising to 750mg x 2. Had some side effects (headaches and tummy troubles mainly) but seizures have gotten worse. Now my dose has been upped to 1250mg x 2 a day, has anyone got any experience with this high a dose?
I don't remember the seizures but sometimes it's taking 2 to 3 days to recover,does keppra help with this? or is there other solutions?
Sorry for the long post but this all new and very scary for my family and me,so any advice would be much appreciated.
Thanks in advance
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Pocketville
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Sorry to hear about your epilepsy, I was diagnosed in my 40 s very scary 😟 when you don’t k ow what to do so I can completely relate. Yes they put me on Keppra too and at the high dose, I think it’s generally the medication they start people on. Are your seizures generalised seizures or focal seizures, there are lots of different types , what did they tell you about what type?
It takes a while for the medication to work but if after a while if it doesn’t there are many different types of medication dependent on what type of seizures you have. Do you have a neurologist? You must speak with them if you have one, I have ended up in hospital many times but sadly they don’t do much,they wait for your neurologist to contact them , I find hospitals a complete waste of time.
I have refractory epilepsy which means it’s really difficult to control my seizures, so I have lots of medication changes, hopefully once you get the dose right you will be fine, give it time. Keep a log of your seizures, look for trends and triggers and if a family member can video you having a seizure it’s very helpful for the neurology team.
There is no cure for epilepsy but if you get the correct medication then it will control the seizures.
There is a lot of information on epilepsy action website and epilepsy society , they have mountains of information, when I was first diagnosed I was on it every day and tbh I still go on them 10 years later, they have up to date info on everything to do with epilepsy. They truly are fantastic and helped me so much .
hi I am in briv too, have to say best meds for me but have been on it for 4 years and have sadly become immune to it so on another meds change, but it had the least side effects, memory loss unfortunately comes with the whole epilepsy it, 🤞
I have Juvenile Myoclonic epilepsy for 52 years, been though the range of medication, have been on Briviact and Vimpat for four years, seem to be ok, one grande mal in 2019, but noticed shaky hands, and as you say memory loss, have had to stop before because of immunity of medication, due to my terminal condition, a change of medication is now positively out of the question🥴
Sorry Pocketville and car67 a bit of a downer at the moment does not really help, I have been on all the medication in these replies, but an old war horse like me, has seen a lot of changes in my time, a lot of these medications cannot be used for certain types of epilepsy, mine JME, since I was 14, with phenobarbitone my only option. Everybody is different, better combinations, the medication better processed! Good Luck👍
My son who was diagnosed with epilepsy in March 2022 after having his first seizure in August 2021. In March he was put on Keppra 250mg x 2 a day. This steadily increased with each seizure which were happening about 4-6 weeks apart. When he had his last seizure he was on 3000mg of Keppra, finally it was decided that the Keppra was not working for him so the neurologist has decided to put him on Lamictal which he has started slowly and is now on 50mg X2 a day which will be increased again in a couple of weeks. He is still on the Keppra at the high dose I’m presuming this will be reduced when he gets to a proper dose of Lamictal. My take on Keppra is I had a feeling it was not the medication for him early on but it seems to be the general medication that hospitals start with as it has the least side effects and is “easy’ to introduce unlike Lamictal it can be increased at a faster rate. I have read and whether this is correct or not that Keppra if it is going to work will start working at low doses( if people have had success with Keppra Monotherapy at high doses please feel free to correct me) Maybe ask your Neurologist directly if he/she thinks this is the right and best medication for your type of epilepsy. Ask why it was the one chosen and are there any other options that would be better. It is very frustrating this wait and see approach and having no say or input into the treatment choices is also something that causes a lot of anxiety for me personally. Hoping things get better for you and I’m trying not to take much from the statistics regarding the first medication not working etc as the majority of these statistics were obtained prior to Keppra being so widely used as mono therapy so I definitely think there is still cause to be optimistic that you and my son will be one of the 70 -80% of people who get their seizures controlled with the correct medication. Best of luck 🤞
Hi thanks for the reply and advice, I was put on keppra in June after having a witnessed seizure in the ambulance,and it worked for about 7 to 8 weeks, then started having more seizures, it seems at the moment the doctors only answer is to up the dose.
Im writing here on behalf of my wife who has same epilepsy for the last seven years. She was having the kepra 500ML in June but side effects was nightmares a lot and heavy headaches plus loosing lots of hair then changes to SV but honestly I don’t think any of them work it’s basically like a meal when you having it you feel a bit ok but if u don’t I’m just a might then you will be behind for two weeks.
Hi there, when my seizures started I was put on sodium valproate (wouldn’t happen now, but this was 25 years ago). Had real issues with weight gain and after about 10 years was finally changed to keppra. I think it’s worth saying that for a lot of people keppra is a brilliant drug that manages the epilepsy and has few/no side effects - although that doesn’t diminish the problems others have.
Unfortunately finding the right drug can be a real trial and error process for some people, but you have to work through it with your neurologist.
In dosing terms I’ve just been put up to 1750mg morning and 1500mg evening. This is a very high dose, especially in the U.K. but it’s really important to manage my seizures as well as possible as I also take warfarin - seizures and blood thinners make my doctors very uncomfortable. The good news for me is that I continue to tolerate very well.
my 16yr old daughter is on 3500mg keppra per day after having her first seizure 7 mos ago. generalized seizures as it happens on both sides of the brain. doctor says it's JME. Sadly she is having breakthrough seizures. Had two tonic-clonics last weekend. we have been given a choice of Lamactil or Zonisamide. Chose Lamactil.
HI, sorry to hear you have started to have seizures it must be a very difficult time for you. I was on Keppra 750mg for a number of years without any concerns and it controlled my epilepsy, absence seizures and tonic clonic seizures ( I also take days to recover) but eventually I had a breakthrough seizure and the dose was increased to 1000mg twice a day. I found I struggled to think and process information, I felt like my brain had become like a slow computer, it was not quick enough to join in conversations and I developed suicidal thoughts. Once the dose was reduced the thoughts went but the doctors decided to change my medication because of this which led to another seizure however I am now on sodium valproate and ethosuximide and time will tell if this is right for me but I havent had anything for 18months. It is trial and error finding the right medication and the right dose for each person and it's a balance between controlling the seizures without causing too many side effects. Some side effects settle over time and some can be helped with making your own adjustments e.g. I get more side effects if I take mine on an empty stomach so I always eat first, it's working out what works for you and if you feel the medication isnt working being open and honest with them so you can get better control. Take care of yourself too.
Hi thanks for your reply and advice, seem to have settled ok on 1000mg keppra twice a day, me and my family don't think I'm suffering any or many of the side effects, so fingers crossed
Thank you all for your comments, sorry its taken a while to get back to you, but I had another seizure and am currently sat in bed covered in bruises (went off sofa hit the table, kicked the wall etc).
All the seizures I've had have lasted between 1 to 6 mins ( with the long ones putting me in hospital) but the recovery can be 2 to 3 days, but this time I recovered in a few hours. Is this keppra?
it’s hard to say tbh, it does take a while for the medication to get into your system. Make a note of everything so you can discuss with your neurologist, they know best.
I never took to keppra made me feel so ill but everyone different , some people I know have taken really well to it and have been seizure free, unfortunately I don’t so I’m about to try a new medication that’s come out so 🤞
It’s really important to keep a diary of when you had. Seizure, how long it was for and the type of seizure so they can work out the correct medication
I have had epilepsy since I was 4 due to a head injury . I’ve been on all the different types of medication for epilepsy from a liquid which I can’t remember the name of to Tegretol, epilim , Kepra etc and i don’t know how but with mine not one single thing has helped and now there is a new medication that is out ( Cenobamate/ Ontozry) and even that doesn’t seem to make much difference either. Everyone is different so the Kepra may work for you. Unfortunately I may have to wait until they legalise the proper CBD oil to have any luck I guess as it’s stress that brings on all the different types of seizures I take .
I was very interested to read that you are on the new med ( Cenobamate/ Ontozry, I am about to start it, just going through the bloods etc, I am keen to know if you have started it and how’s it been. I have had approx 10 med changes over the years , I decided this one will be the last one then I will prob consider neurosurgery. None of the meds worked in fact I am worse than I ever was and the side effects have literally destroyed me.
If you are on it, please would you mind me asking how long you have been on it and what dosage? I am very keen to know more about it as I have read all the research etc and it sounded very positive. The only one that truly helped me was briv but now I’m just immune to it so having seizures everyday, I can’t actually remember being seizure free in a long time.
Thank you for your message. I’m ok at the moment but still feel like there’s no real solution to my epilepsy.
I’ve been on this new medication for about a week now but I honestly don’t feel any different and have still had seizures while on it . I will be getting a call back from my neurologist next week to review it but I can’t really give it a positive answer just yet but the side effects of tiredness are still here as well.
I see your thinking about having surgery if this new medication doesn’t help you . I really hope it does so you don’t have to go through that . I actually wanted to go through the surgery before as well so I had scans to locate which part of the brain was damaged but unfortunately after all that they couldn’t locate it so I have been denied that opportunity. This is why I wonder if CBD oil would be the last resort.
I’m sorry I couldn’t be more specific about it but I hope it can give you an idea as from what you mentioned about becoming immune to all the meds you’ve been prescribed before . It sounds like your situation is a lot like mine becoming immune to everything we’ve tried.
Take care and I really wish you luck with this new medication.
Thank you for your reply, sorry you still having the seizures with the new medication. It’s an absolute nightmare. They are about to start my titration soon, I am sceptical about it as I have lots of changes, similar to you. I am trying to be positive though as I have had enough, yes both our cases sound very similar!
I have always said no to neurosurgery, it really frightens me but I feel so desperate , like I have no choice. On a bad day I am adamant that I will have the op on a good day I say I’m not!
I have a cavernoma on the left side of my brain which is why I have epilepsy, completely changed my life. I have gone from being a really confident, happy, sociable person who had bundles of energy to being the complete opposite! Everyday is a different day though so let’s see!
I know what you mean about losing confidence etc due to the epilepsy. I studied in graphic design and got my qualifications but now I’m unable to work in that field due to strobe lights and health and safety . My family grew up around motorcycle racing and that was a dream of mine as well but I’m not allowed a license. It feels like everything and all your dreams are taken away in one go , so what is the point in bothering anymore?
The only time I seemed to of been making mass progress with it was when I was around my father. Unfortunately he passed away 10 years ago so everything just went downhill from then . There is a site on Google if you type in “ British woman murdered on her lodge in South Africa “ to get an idea of another situation after my father passed away.
( sorry to bring that up but it is a strong trigger for my stress which is the main cause of my epilepsy) .
I still hope something will work and I wish you luck with these new meds.
Please do keep me posted and i shall do the same if it’s ok with you ? I’m sorry but I am slow at replying but I always will.
It’s very sad to hear about your job and your passion for motor cycle racing and not being able to pursue these, yes it’s very difficult to adjust to a new life and it’s a struggle but somehow we have to try so hard to be positive , and that can be a struggle too when your having a rubbish day.
I am sorry to hear about your fathers passing and the positive influence he had on you with your epilepsy, I sadly lost my father 2 years ago but I have just blocked it out,I don’t think that’s very healthy either!!!
I did Google about the murder , was that Anni Dewani? Did you know her?
Stress is a big trigger for me , I try to teach myself lots of different strategies and techniques to prevent myself becoming so stressed , but sometimes it’s too late , and I end up having the seizures. It’s a vicious cycle.
I will def keep you posted , I’m hoping to start the meds in a couple of weeks , so 🤞
By the way if you go on to BBC news and type in the search bar epilepsy there’s a very interesting article about a new treatment for hard to treat epilepsy called Laser brain therapy , this will be funded by NHS in the new year , less invasive than neurosurgery! If you get a chance ,read it. Sounds too good to be true but will be great if it works.
I think you may have googled the wrong site . It was Christine Robinson from Liverpool on her lodge in South Africa but with so many things on Google it’s easy to get mixed.
Thank you for letting me know about the BBC search bar . I will take a look at that .
on my gosh Neil, I am so sorry to read that, that must have been such a traumatic time for you all. I completely understand why it would such bad stress triggers for your epilepsy. So traumatic
have you received any counselling ? I am very sorry I googled the wrong article, I’m so embarrassed.
I haven’t had counselling for it but have found that if I find a decent distraction it helps. Believe it or not I’ve got in the habit of practicing and collecting electric guitars.
Like I said I honestly wouldn’t be embarrassed about selecting the wrong article as there are that many 👍
Distraction is great, counselling is too but only if one is prepared to go through the heartache of reliving something they don’t want! message any time take care 👍🏽 🙂
I started my cenebomate Friday the 4th November at 12.5mg titration, I have been seizure free only 4 days and have severe side effects. I am going to continue to be strong and keep going as am desperate. Ironically the seizures have been worse, not sure why?
Really sorry to hear your seizures are worse but believe it or not so are mine . When my friend and I landed in Amsterdam on Monday we were heading for the checkout at the airport and I had a seizure that was really aggressive and it even scared the hell out of him . He knows all the ones I have as he’s known me over 20 years and he’s been fine and was prepared for them but he never saw anything like that one before. He has described it for me and I will have to get hold of my neurologist about it . All I can say is be prepared just incase . I didn’t even realise I had that bad one . Apparently the seizure was that powerful but so was my subconscious. It was like something was trying to fight the seizure with such anger I almost ended up through one of the shop windows in the airport.
Sorry about the strange description of it . Hopefully yours will adjust to the new meds and start to feel better with them 🤞
Wow!!! I am so sad to hear that your seizures are worse, tbh my sister told me that the seizure I had was one of the worse ones , it really frightened her! I just thought maybe I have to get worse to get better,I’m not sure as it’s a new medication and neurologists prob still trying to work out the side effects etc?
I hope you are feeling better , I am still taking cenebomate , week 2, I will keep you updated , please let me know how you are getting on if you don’t mind, or if you hear anything new x good luck ,thinking of you and wishing you the best of health always 🙏🏽 X
Thank you for your reply and well wishes . It seems like your situation is almost exactly the same as mine with seizures getting worse if it really frightened your sister as well. So sorry that happened.
To be honest even if it is new medication and we’re giving it a chance to thoroughly start to do what it’s designed for I honestly don’t have any confidence in it after the seizures being worse than before we tried it . I guess it’s a chance we just have to take .
Please keep me updated and I will do the same for you from here .
Well today I had 4. Bad seizures ended up from work at 11am, it sure what to do, I spoke to a nurse yesterday who said to,persue with it as it will get better,( but at what cost.) I’m more confused than ever, I’m shattered, my words are jumbled and I’m only at my start point increase next increase Friday? Really don’t know what to do, I have had to take my emergency meds twice so I’m bed with complete brain fog and anxiety , it’s a never ending cycle. I really hope you are feeling better 🤞
I seem to be a lot worse, was wondering if your seizures had settled down?
I am now on second week of 25mg , reduction in pm lacosomide and all rest of meds same, I just thought maybe I would see even a slight improvement but unfortunately I am no better and def worse. I have left another message with the nurses but not sure when I should see an improvement , timescale wise.
Have your seizures settled? Do you feel any better, side effects? Please don’t feel you have to answer all my questions, i don’t know anyone else who is on this new one so don’t really have anyone to ask.
To be honest I don’t think my seizures have improved at all. I think I’m on the same amount as you- 25mg every evening. I have had more this weekend while in a shop and one earlier on today in one of my local shops. Luckily I get on well with the owner so he helped me and gave me one of his shop seats to help me recover. I am really grateful for his help but embarrassed at the same time as it may have happened while customers were in .
In all honesty I don’t see or feel any benefits with this new medication.
I’m still going to give it a bit more time to maybe adjust to them but if I don’t see or feel any decent improvement with it I’ll be trying to see what else can be done.
Sorry to hear you’re feeling worse with them but hopefully something positive comes out of taking them.
Let me know how you progress and I’ll do the same for you.
Sorry to hear about your seizures and I completely understand the feeling of having seizures in a shop etc, I would feel the same , I hope you are feeling better.
I have gone of sick from work today, couldn’t cope any more with the amount of seizures and not being able to function also the sheer embarrassment of looking like I have been out partying all nite, heavy and glazed eyes!
Like you I feel it hasn’t helped, I just want to know at what point will I start to feel better and am I supposed to be feeling this rough? I wasn’t really given much info, just a call a few weeks back explaining that the meds will be posted out and a letter would follow explaining the change of dosage to take me to the final dose.
It’s really great being able to chat to someone who knows exactly how it feels and I very much appreciate you replying. Thank you
Sorry to hear your now having to take time off work now because of the situation. I really hope there could be a solution to help you get started with it again.
The description about the glazed eyes etc sounds just like me with certain seizures from what my friends say. I also wonder when things are going to start going right but from what’s been happening I don’t have much hope or confidence.
I really appreciate your replies and descriptions from your experience with them . It helps to know I can also chat with you and that you also understand where I’m coming from with it all.
Thank you too and here’s hoping we both get sorted with these problems 🤞👍
Since my first supply of the new meds I haven’t received another prescription. I checked my chemist and the one in my hospital and haven’t been put down for another supply on there either so I may have to go for another appointment to get some more . The time I’ve missed without them definitely hasn’t helped as I’ve had more seizures again . I was in my local town centre with my fiancé and had one in the middle of the road on a zebra crossing which certainly wasn’t a good one .
I’m sorry to hear about that, yes maybe they need to see you again. I’m still having them every day, in fact I was seizure free on Saturday , so one day . Tbh I’m just gonna keep going, to see if they make any difference, I’ve spoken to several people who are on them and they seem to mimic our experience, but are also try to remain positive .
I now have a Viral infection and feel dreadful so off sick another week, I don’t think work are impressed but tbh right now I don’t think I care , I’ve been through what seems like a roller coaster and am struggling so much. Good luck Neil , 🤞
Sorry to hear that you now have the viral infection now. My fiancé had one last week when she came back from a weekend in Liverpool. She kept bringing up food after a meal and could hardly move. Luckily she’s ok now though . I hope you recover from it soon as well.
Hi thanks for the reply, it must be really difficult to deal with epilepsy for that long and all the different medicines, hope they find something that can work for you soon.
I'm thankful for all your support, I'm happier knowing that there is other treatments that can be used (if keppra doesn't work).
your welcome and very good luck to you too, there will always be someone here to support you , I know epilepsy action supported me immensely when I was first diagnosed 👍🏽 Even listened to my tears over the phone 🙄
Hi. I take 1,00 x 2 a day since taking keppra I haven’t had a seizure for 5 years I had quite a few different medications at the beginning and was still having seizures I must say because I can’t remember anything about a seizure the worse was definitely the after effects I was so tired couldn’t do anything for about a week spoke back to front just couldn’t function. I keep to all my triggers eat snacks quite often no low blood sugar don’t get overheated and no driving in the dark I have an alarm for medication. I do hope you feel well soon it’s a very dark place to be in x
Hi my sister got diagnosed with epilepsy in 2021, they put her on keppra had to keep upping the dose until she now takes 1750mg twice a day, difference I have noticed is that she is not as alert as she used to be and her sleeping pattern gone crazy, unable to tell you how she feels as she has a learning disability
Everyone’s dosage is dependent on several factors , it’s seems like a high dosage but there must have been a reason for this? It will make your sister drowsy to begin with as her body adjusts, how is she now? Have you spoken to her neurologist? Sometimes you have to play around with the timings to get it right so to make it fine for sleeping ?
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