Please help

Please help

I've been diagnosed with epilepsy in July and started on epilim 500 twice a day. I'm now on 800 a day and still having seizures. Every time I go see the doctor they just increase my dose. My ct scan and eeg came back normal. I don't know what to do anymore. Feeling helpless and alone. Please ANYONE with any advice help cause I don't seem to get it anywhere else.

13 Replies

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  • CT Scans detect any structural defects in the brain. EEGs only show epilepsy when it is active, but if epilepsy is proactive.

    Obviously the only person who can give you the best answer to your questions is your neurologist.

    Here's wishing you well.

    Richard

  • Thanks Richard

    I do hope that they can help cause at the moment itjust feels hopeless.

  • Samantha,

    As a person who had epilepsy for many years now I fully understand what you are going through.

    I would be very interested to know what happened to you and how your neurologist decided that you had epilepsy.

    Were you involved in an accident, or did your epilepsy just suddenly come one.

    Take great care Samantha and try not to worry about it as this will be bad for you.

    Thinking of you.

    Richard

  • Hey Richard

    I had my

  • Richard

    I had my first seizure in June and they didn't diagnose me yet as my potassium levels were very low. After the second one i was put on medication. And since then the seizures just came. No reason has yet been discovered. But thanks for words of wisdom 😀 .

    Puts me at ease somehow Samantha

  • Hi Samantha, I can understand how you are feeling, my epilepsy started earlier this year in MArch (following viral encephalitis 2 years ago) which they put my epilepsy down to, I've been having seizures every 3 months and have had my medication increased each time now on 750mg Kepra twice a day but still have them every 3 months +/- a week, its is life changing and takes a while to get your head around, try and keep positive and try and get to see the epilepsy nurse at your hospital who I find is more help than the neurologist, she has given me lots of information, and details of a support group near to me, you are not alone.

    best regards

    bev

  • Thanks bev

    It's just at times you feel at yourwits end not knowing which way to turn.

    I'm from Cape Town, south Africa and am still looking for a support group close but so far no luck. But this has been helping knowing there are people like me out there somewhere. Thanks

  • Hi Samantha

    It can be difficult to understand what is happening when you are newly diagnosed.

    For most people with epilepsy their CT scan and EEG come back clear. The CT scan is to look for abnormalities in the brain that may cause seizures. And the EEG only records what is happening at the time of the test.

    Most people take epilepsy medicine to help control their seizures. It’s usual for the neurologist to start you on a low dosage then gradually increase your dosage. It can take a few weeks or months to reach the maintenance dose. The maintenance dose is the amount of medicine which is thought to work well at controlling seizures. Starting at a lower dose, then gradually increasing it, allows your body to slowly get used to the medicine. This reduces the risk of side-effects.

    Epilim is generally started at a low dosage and needs to increase to 1000 – 2000mg a day to reach the expected maintained dose.

    epilepsy.org.uk/info/treatm...

    As well as this healthUnlocked community, some people find it helpful to attend our coffee and chat groups. Coffee and chats groups are being set up all across the country. These give people the chance to meet each other in ordinary venues like cafes, tea rooms and coffee shops. They offer a relaxed way to meet new people, share experiences and get information on how to learn more about epilepsy. To see if there is a group near to you please use this link.

    epilepsy.org.uk/near-me

    You can also talk to one of our trained advisers on the Epilepsy Helpline (freephone) 0808 800 5050. Callers to the Helpline are guaranteed a friendly welcome and can discuss their concerns confidentially. We can discuss your diagnosis, your medication, and many other issues related to epilepsy.

    Regards

    Diane

    Epilepsy Action Helpline Team

  • Hi Samantha, I have had epilepsy for over 40 years (photosensitive, cause unknown) I have been seizure free (bar a few near misses) for over 20 years now controlled by Carbamazepine, but I remember all the tests and medication trials (I also started on Epilim think I had around 1400mg per day at one point with epanutin on top, but this was then changed to carbamazepine 3x 100mg later on. This seems a bit scary at first but as long as you are being seen by a qualified neurologist you should be in safe hands. Try not to think of the worse but do make the most of your appointments and ask as many questions as you can (e.g. prognosis, cause, medication side effects etc.). And of course ask any questions you have here. It took me a while to get the right medication that worked for me but once you are stabilised its a whole lot better. Wishing you well :)

  • hi Samantha, I've had epilepsy since I was 16 years old I felt like how your feeling now and the tablets will take a while to get use to so you will continue having seizures until your body gets use to taking the tablets so when they get increased each time your body will have to get use to them and then it will slowly stop you from having seizures, I'm on keppra and epilim all together I'm on 1500 keppra and 500 epilim and have been since the age of 16, it will get better over time and will slowly start getting better

  • The only thing you can do is see a specialist, they will try different drugs until they find one that works, but that may take some time. Increasing the dosage is not always the answer.

  • Hi Samantha, I'm in exactly the same predicament as you at the moment. I've been put on Epilim 500 twice a day because of multiple absence seizures, now they've upped it again today because of another one. They will keep doing it I think until they are happy they've controlled your fits. I'm getting sick of the migraines they are causing me at the moment. I feel so nauseous and drained. Hope your ok Sam,+be well.

  • I am up to a total of 2100 a day with epilim and others. I still have seizures as well.

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