This is a new thing for me. They put me on onfi and now I'm like super paranoid/having hallucinations including auditory and smells and somewhat visual I think. I had smells occasionally before they put me on onfi but now I have them more often. Is anyone else on onfi and have hallucinations/paranoia? Or does their epilepsy cause these?
No.
Every person is different but I hated onfi. I would think I saw a shadow move or hear something but when I looked and saw nothing the it was whatever. When I had my right temporal lobectomy I would hear and see things. When a dog would bark or any animal would make a noise I would hear something. The weird thing is when I told my neurologist about it he asked what they would say. When I would say “go to sleep!” Or “go do nothing!” He said that it was the left side of my brain taking over for what they took out from the right side and that the left side is just tired and is throwing up the white flag saying time to rest for a while. Once I took a break it went away and now that I have a deep brain stimulator it has went away. I wish you all the best luck and know there is a lot of people here to help.
No thank goodness
If your having those types of side effects, get your neurologist to get you on something else. If he doesn't listen, then go to your GP
Doc's listen to other docs.
@A MyEpilepsyTeam Member Please just keep in mind I am in WV so medical care is hard to find especially half decent and I am not trying to offend anyone but what I went through was ridiculous due to theses facts. I do have medical ID on my iPhone and Apple Watch was wearing both and have them set up to be sent over anytime I hit the SOS button and I did that at first because I fell out and my watch will automatically call if I convulse or collapse in a way that makes it believe I have fallen which was the case and I see an OBGYN that is in network with this hospital and they have it on my medical records my fiancé also explained to them about my meds and my epilepsy they just literally don’t have neurology at my local hospital and only have one General surgeon in the ER and have only two ER doctors the rest are RN’s and FNP-C’s they knew they just didn’t care because when I first came in I have it documented the doctors accusing me of being on illegal drugs no matter how many times my fiancé told them otherwise and them refusing to give me any of the meds I was prescribed even though my fiancé had brought them in with him and showed them to the ER staff they refused to do anything more than bring down my fever and give me antibiotics and then send me to a hospital almost 5 hours away when I’m on Medicaid and went from saying they were going to air lift me to Charleston WV where my care team was actually located for epilepsy they sent me to hospital in Roanoke VA from Southwestern WV which is close to Mingo County WV is an idea of where I live now and the closest neurological care is an hour and half away in either Pikeville KY or Charleston WV they kept coming up with excuses to keep me in the ER near Mingo WV for 2 days longer before sending me to Roanoke VA and then because I am on Medicaid Roanoke couldn’t admit me without leaving me in the ER waiting for another 4-6 hours it was long enough my parents were able to drive up from NC after the 2 hour mark of my arrival in Roanoke which was a 2 and half hour drive for them and waited another few hours with me to make sure I didn’t collapse out of the wheel chair they left me in the ambulance service that is. So yeah I did my part I had the Medical ID and I had it set up to where anybody could see it on my digital devices they apparently seen it because they contacted my emergency contacts both times just didn’t care they only wanted to charge my insurance for an ER Room for as long as possible and send me to a hospital they regularly refer patients to that they knew was going to leave me in medical debt when Charleston and Pikeville were closer and in network with my Medicaid even though they knew I needed emergency surgery to drain an abscess due to the fact my epilepsy meds do cause bone density loss and tooth loss and the surgery was close to my main artery on my throat and my throat was almost swelled shut from sepsis.