Help - epilepsy. Halucinating lots - understanding appreciated


My epilepsy kicked off recently. It is having a lull at the mo - which is why I can type. My meds have been increased but have to wait a week. Was wanting to know if anyone can relate to experiencing trippy stuff -

Lights raining down, zooming in and out of your body - ie, leaving your body and seeing yourself below, except witha different hairstyle. lol. Having what I can only describe as a dislocated series of images, like a film running in your head for about 2 hours. Snapping bak in2 your body. My op was on the visual part of my brain. I nearly rang the doc last night as the partial complex seizures were so incessant iem oing on for hours ata time but gavedecuded to wiat it out.

thanks flowerxxxx

Hi Flower,

If you don’t get some responses here, might try linking up at the National epilepsy foundation websites. I think they deal more with seizures and what to make of them.

Hope this helps,
ron, ks

Hi Ron,

I appreciate yr reply & suggestion, doesn't look like many people out there have non-convulsive episodes. Am on valium now, fingers crossed.

flower(can I hve a new brain plse)


I have had some seizures since my aneurysms were treated but my symptoms are black outs, starring, confusion nothing visual. I am thinking maybe it has something to do with the location in our brains.

Thanks for your reply donna

My brain is mashed. I'm hearing rhythms and tunes - does anyone else get them? I'm not clear enough do searches on this system cos of the lights.


flashy flashy flower xx Upping ANOTHER drug 2nite. see wot tomorrow brings. I am blessed to have good friends though as some of my family have backed off - anyone else get that?

I sometimes hear music in my left ear. It’s sounds more like a harmony. I tell my friends, I can hear the Angels singing.

Hi Flower. I hate to mention it but are you sure they are not over-medicating you? They did that to my father one time.

My husband has a >6 cm inoperable AVM in his eloquent brain (left hemisphere.) When his blood pressure is up he hears what is called "swooshing" which in his case sounds like the blood flow through his arteries in his left ear. It can be quite loud and he can feel his pulse above his ear on the left side of his head.

His doctors tell him that that symptoms are red flags so he always takes his blood pressure and records it into his book when it happens. He also notes the other concurrent symptoms he's having like pressure in a band around his head, a headache, etc.

His AVM and AVF in his right brain that cause seizures. So, he takes his seizure Rx & pressure Rx, if necessary, and the symptom goes away. However, we would go to the emergency room if within a couple of hours or less the swooshing doesn't stopped.

All of this is highly variable depending on the patient's AVM size, location, age and so many other variables. So please, please do substitute anything I say for your team of doctors advise. I am not a doctor.

Good luck, God's speed to good health. JoAnn

Barbara H. said:
Hi Flower. I hate to mention it but are you sure they are not over-medicating you? They did that to my father one time.
Thanks 4 yr reply Barbara. I've gone toxic b4 so hope wld know the symptoms. My head is getting better but was up at 4am with lights, brightness, darkness, amorphous shapes, music, need I go on.... yawn. It's a bit like loosing your sanity - ayone else relate? Cos I KNOW what I see / hear isn't THERE.

Hi Flower. I hope you can get some answers soon. Having what I call a psychedelic trip at 4 am does not sound like fun. I am sending positive and healing vibes your way!!!

Hi, I'm at the tail of end of a 2 week long non-convulsive status episode with visual and aural disturbances. Won't go in2 too much detail as my head as basically been totally XXXXXX for 2 wks & have been unable to go out. It's been hell, has anyone else had non-convulsive status episodes and how long did they last? I know this is NCSEPARTIAL cos it has happened before. I feel like I've been hit by a truck and my brain's been put in a blender. Have no idea how I survived this.

Any words of support wld be v welcome. Best wishes all.




Flower, my husband has not experienced what you’ve described but, my goodness, our heart goes out to you. We are sending supportive thoughts and prayers you’re way & pray you feel better very soon. jo

Thank you all for your kind words of support. Brain mended itself and the world looks normal again!


I had some really bad medication trips too. Luckily I have a great doctor who listens to me instead of telling me how I feel like some of the others like to do. If you can, try to keep a journal of the symptoms so you can go through them with your doc. I had trouble writing so I kept a little recorder on hand to record messages to my doc. It can really help them regulate your meds, especially if you’re like me and forget about things once you’re in the office going over the laundry list of problems.


I like your humour about the laundry list! Kind of reassuring to know that am not the only one who’s experienced trippy-out trips. I also kept a journal. Mainly pictures, quite random. I know what you mean about having trouble writing - I’ve had my vision ‘xxxxx’ up as well. Weird isn’t it?! Good luck

Best wishes