I was wondering from people who have had benign brain tumors removed who has been on Levetiracetam and how long have you been on it? I’m 8 weeks out from surgery. I didn’t have seizures before surgery or after. The Levetiracetam is causing unbearable side effects. I’m having acid reflux like symptoms, nausea, anxiety, and trouble swallowing. I’m also not sleeping well. I’m waiting for the nurse to call me back but my doctor claims most of my symptoms aren’t from the medicine? Anyone else have these troubles? What is the normal time frame people stay on anti seizure meds after surgery?
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Lschemn
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I used to have Epilim Chrinos anti seizure tablets post surgery as scarring did trigger seizures so my advise is to stick with them.
I am now on keppra which is the same as yours. I take omeprazole capsules to protect the stomach lining and do not suffer you side effects. Maybe worth a try.
Hi Lschemn, l have just read your story of taking Levetiracetam. I had surgery in June 2019 and was given these tablets then and still take them twice a day. I have never had a seizure. I was also given acid tablets to take 1 each morning. I was taken off them some months ago. The surgeon called me in June and said l could come off taking the Levetiracetam, they have to cut the dosage down to enable them to be stopped. I still take, maybe my situation is different to yours. You may need to take an antacid table each day, which could improve how you feel. I wish you well, take care. Jen
You didn't mention the dosage of Levetiracetam you're taking? I had those same symptoms when I was taking 750 mg twice daily. When I cut back to 500 mg twice daily those symptoms, especially the acid-reflux like symptoms, really improved. As for duration of taking Levetiracetam post-surgery my neurosurgeon said 1 year is the standard - but there is no real science supporting that. Drug companies don't like to fund research that could lead to shortening the duration that people take drugs. My neurologist recommended taking vitamin B6 50-100 mg daily for levetiracetam related side effects, but I never tried that. Good luck.
I am currently taking 500 mg twice a day. I wonder if 750 mg a day would be effective. My pcp thinks I should ween off it being that there is some research that states there are no proven benefits to being on anti seizures meds more than 2 weeks post surgery. Of course I’m waiting to hear from the nuero nurse but I’ve called twice and heard nothing back. Thanks for sharing your experience!
Hi had a meningioma tumour removed In March 2022 I was put on levitracetam 500mg twice a day after having one seizure in January 2022. Went to see my Neuro consultant in July after my MRI scan and everything okay. I asked about coming off levitracetam and he said I can wean myself off them. On advice I reduced my dosage to half a tablet twice a daybut decided to stay on that dosage as I have just been on a cruise and flight so was reluctant to come off altogether. I will wean off them from now asI have had no more seizures since the first one in January 2022. Best advice is to talk to your consultant or secialist nurses for advice
I talked to my doctor today and he said people stay on this medicine the rest of their life sometimes. I’m still trying to process that. 😞 It’s been a rough couple of months. Thanks for your input!
I was on it for two weeks post craniotomy. One month after surgery and two weeks after the first covid vaccine I had a mild siezure . I blame the vaccine, so never got another. I had to see a neurologist who put me back on, took my dr. license for 6 months. and has kept me on it since. It has now been 1 year 7 months. I have been hounding her to get off of it. My side effects are dry mouth and more tired than usual, no other side effects. I have another eeg scheduled for April 2023 and if that does not show anything she will take me off. So that would be 2 years after mild siezure. If you haven't had any siezures I don't see why you should be on it more than 1-2 years total. Are you in the US ? I am in the US. It seems to be different in other countries. I really wish there were some in person groups for us. There are so many of us out there. I met two just by chance and call to talk to them. Stay strong, I wish you all the best.
Thank you Gigi! I am in the US. My doctor then proceeded to tell me yesterday the lady he saw before me he took off the medicine after 2 years and she drove her car into a house. It was a bad appointment. I’m with you. I wish I had more people to talk to about this. I was told recovery would be easy and I feel worse. I’m hoping things get better soon. Thanks for sharing!
Hello. I had two post op seizures 5 hours after surgery and have been on 500 mg Keppra twice daily for 5 months now. I have not seen the surgeon yet to discuss anything at all but want to ask if I need to keep taking them. I will get only 15 minutes to discuss everything and this is not enough. They cause me severe nasal congestion, nausea, exhaustion, I am now very anaemic since on them and no reason found, hair thinning, dizzy feeling and swollen ankles and feet. No reason found in bloods for any of this, the only change is Keppra. I take a PPI too but it has not helped. I hope to stop taking Keppra if the surgeon thinks the seizures were surgery induced. I wish you well.
HI, I had surgery Oct. 20th. I was put on Keppra 500 mg twice a day. Seven days post-op I had what I thought was a stroke. I was slurring my words, my smile wasn't quite right. At the ED, they did a couple of CTs. They could see blood in the cavity where I golf ball size tumor was removed and wanted to admit me.
I asked to be transfered back to Boston, where my NS and team was. I was able to. call her, spoke with her PA. After they read the CT scans, they felt it was the same amount of blood post-op and just needed to be reabsorbed.
The slurring of words is apparently a single focal seizure . Now, instead of being on Keppra for 14 doses, I am on it for 6 months. Sigh. Otherwise, I have no restrictions, if anything changes or worsen I am to call my surgeon. Not sure if this really helps? I had had no idea a seizure could presnt only as slurring words.
They class anything as a seizure these days , if there not sure they will say its a seizure they did the same to me and i couldn,t drive for 12 months.
i had a craniotomy last year
Do not break wind in front of your consultant otherwise you will be put on Keppra and banned from driving for 12 months.
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DVLA - 6 months post meningioma surgery
frustrated 
No Surgery
Housebound in severe pain.
Sphenoid wing meningioma
