Hi there

My sister was told the same following removal of her brain tumour. There can be many reasons why you have seizures, and I think radio and just having a tumour puts you at risk of having them. Are you on any anti seizure medication? My sister's was increased when she started having more seizures, but following a scan her tumour had come back which is the reason why she was having the fits. What type of tumour do you have?

All I would suggest is keep a close eye on how you are feeling an get in touch with your nurse at the hospital if you feel something isn't right, I think it's always better to be cautious.

Take care of yourself x

P.S - I don't want to scare by what I have just said, I'm just drawing on my own experience with this, xx

Hi, I also experienced my first seizure last Wednesday night, the first since the end of my treatment last September to tackle my grade 2 asrocytoma, I was given an increase in dose on my Kepra which seems to be holding me. Although it was a frightening time, which has now hopefully pas,t I found it a comfort to tell people close to me, what to do in the event of me ever having one when out and about with them but meanwhile I'm now waiting for the Dr's reports etc to filter through to my Consultant and hopefully he could shed some more light on causes for me for me to help others in the same boat!. Take care....Regds Andy    

:I there!

Reading your words truly give me comfort but also makes me wonder why there are no real answers to our questions. I was diagnoues in 2009 with a low grade astro. After biopsy I fought both seizures and infection of the biospy wound. After four years I managed to find a doctor who cleared it up, no problem. My tumor also sits of the moto region and I too am awake through the whole nightmare. I am currently taking Epinutin 400mg, Tegratol 400mg Rivatol 4mg, pax5 and activan per day and am having regular seizures. Approx 1 every week. I have so many questions but nobody seems to have answers. The doc's just give me more. A more meds. I don't want to take them anymore. How do I fine the cause and treat that and not just the symtoms?

Hi Iplewis

Welcome to Cancer Chat.

I'm sending you the link to our page on brain tumours, in case there is any information there which may be useful in helping answer your questions.

You could also contact our information nurses for advice.

You can call them on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

Calls are free from UK landlines and most mobile phones.

Best wishes

Jane

Hi I had a brain tumour sucessfully removed in February 2017. I the  had a lesion on my left lung removed in April.Thetey followed eleven sessions of whole brain radiotherapy. Of was after this that I had my first seizure at home and was rushed into hospital for three days. I was put on Epilim but had another two seizures each needing a short stay in hospital. My Epilim dosage has been increased and no more seizures for several weeks. The consultants seem to think that scar tissue on the brain is the most likely cause. Believe me, you will start feeling better as time goes on.

Hi there, 

Hoping you are feeling better now, after having a multitude of seizures from March 2019 starting off small then gotten worse from August and progressively worse and violent thereafter.

I too am in a similar situation where I had a astycytoma grade 3.5 tumour removed from the right hemisphere of my brain in March 2014 and then was on 3 months of radiotherapy and 6 months of chemotherapy. Thinking I was doing well after being cancer free for so long it bit me hard to begin experiencing more and more seizures which now seems to come in different flavours where it can be minor twitching of my left arm and leg to violent ones where I tense up, once losing to ability to feel and control my left side for about 15 minutes. I started on 250mg of keppra and now on the increased dosage of 1000mg doesn't seem to have made any difference I've been continuingly going to oncology appointments but they only seem to be focused on the cancer side of things rather than the epileptic symptoms I am experiencing which has led to increased frustration. Although frightening I know that I'm lucky to be alive and as a fellow brain warrior can you offer any advice since your last post?
 

Hi. I was diagnosed in 2009. Decided no chemotherapy or radiation. Read my post above for a full update on progress. Its now 2020. Been on all the meds epilim, keppra (changed my personality) extra... all of them. Nothing worked. I ended up in icu with uncontrolled siezures more times than i can count. Until i met a professor of nero at a university hospital of cape town. He put me on a dose of activan 1mg 2x per day and rivitrol 1mg 2x per day. Both are not siezure meds but tranquilizers. He explanation was I dont have epilepsy but siezures caused by surgery and scaring on the brain. What was causing the siezures was at the scar point.  the electric brain waves that tell your body what to do were getting stuck at the scar point. And what needed to be done was carm the brain waves down, to prevent them getting suck. It took a while to get used to waking up tried but coffee fixed that. Since starting this treatment no siezures at all. Its been 5 years now. The dose has been increased over the year's but not by much i now take 2mg activan 2x per day and 2mg rivotril 2x per day. And to be honest happy with the results and the freedom of movement this allows me. I nolonger wake up tired for year's. I hope this helps you. Also try keep your stress levels to a minimal amount. And no sugary diets. Good luck and miracles 

Hi,

Thank you so much for the advise I will show this post next time I see a neurologist. Hopefully by then I can give an update on the situation and any progression.