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Old 05-30-2015, 06:25 AM
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Occipital lobe epilepsy? Palinopsia?

Hi everyone, I hope you are all well

I was wondering if anyone has occipital lobe epilepsy? What do you see? How were you diagnosed? Do you have any other seizures along with it?

I'm being investigated or epilepsy and migraine, I never get migraine headaches. I've had an EEG done and waiting for an MRI.

Since June 2014, I began seeing lights, after images of objects in bright neon colours (blue,yellow,pink,purple). I've since realised this is palinopsia. Something, like a computer screen or a window or even a person would appear repeatedly in my vision, glowing in a bright colour and multiplying.

Sometimes a room starts humming with bright colours, outlines of objects and people shine bright blue or pink. I see multiples of objects everywhere I look. If I'm having an episode & I move my hand it looks like slow motion, after images of my hand trail behind. Same with lights- like a long exposure effect on a camera.

I sometimes see shimmering lines and balls, spinning circles, waves of light moving across my eyes. Sometimes objects appear to move in and out, or ripple, or move further away from me.

More infrequently I see a face on a wall, like a photo, or I'll see a cat jumping where there is no cat. I see something move out the corner of my eye, like an animal or a person. I've seen little black dots crawl all over the wall, once a bright green net took up my entire vision, everything I saw was trapped behind it.

About 3 times I've been stopped in my tracks and sucked into a memory, watching it play out in front of me. I can smell the air & hear the sounds of the memory. This is incredibly intense.

I have other weird things like twitching, absences, rising feeling, confusion, memory loss, intense nausea, loss of consciousness, hearing weird sounds, odd sensations on the skin etc & while they are frequent the lights, after images, lights & colours I see every single day. They've only gotten stronger since June & they are baffling. The doctors don't say much about them, but seem confused & intrigued.

I'm guessing this is rare? Does anyone here suffer from occipital lobe epilepsy & does it sound like this? I'm desperate to understand what is happening to my brain! It happens for hours a day & its exhausting to ignore & even more exhausting to understand.

I had my sleep deprivation EEG done yesterday, I had lots of twitches and plenty of visual seizures so I hope they caught something.

It would be wonderful to talk to someone who has equally odd visual symptoms!

Thanks all xx
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Old 05-30-2015, 11:35 AM
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Welcome to CWE, KittyI
I do not have what you are describing so cannot offer any input in terms of subjective symptoms, etc. Occipital lobe epilepsy as you have probably read is rare but perhaps there are a few people here who have it and will respond. Migraines of various types (eg. auras only, painless migraines with visual hallucinations) are more common.
If the MRI happens to show calcifications in the occipital area, you may want to ask for testing to determine if you have celiac disease. This is rarer still than other types of occipital lobe epilepsy, but worth asking your doctor about if calcifications are identified.
Keep us posted on what the neurologist has to say and good luck!

Last edited by masterjen; 05-30-2015 at 02:13 PM.
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Old 05-30-2015, 06:53 PM
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I have had palinopsia once--but it was an atypical migraine aura for me and not a seizure. The trails behind moving objects was a very frequent migraine aura, as well as zigzaggy lines and bright flashing lights--but what I would really call palinopsia was one episode where if I looked at an image for a second and then looked elsewhere, that last image would be very strongly superimposed on the next thing I saw for several seconds, in full color, until I had one image on top of another on top of another--it was impossible to function and very frightening. It only happened that badly once and only lasted about 10 minutes. I'm sorry I don't have anything to share about occipital seizures--I hope you get some answers!!
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Old 06-01-2015, 04:14 AM
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Hi MasterJen,

Thank you! I've had a blood test for celiac and it came back negative, I am awaiting my EEG results & for an MRI. Thank you so much for this info, its very helpful.

Hi Lindsay, that sounds just like what I have, except mine is rarely realistic and instead very colourful. Thanks for sharing your experience with me.

Is it possible to have both migraine aura (no headache) and epilepsy?

As well as these constant lights (& now they are constant!) & occasional hallucinations, I get random episodes of staring, often whispering or quietly singing to myself, horrible waves of nausea & a rising feeling that often results in loss of consciousness, very intense muscle twitches & jerks and something my GP has named as absence seizures. I sometimes get vertigo & odd sensations, feeling like I'm out of my body or like my legs are not there, its hard to explain.

I feel like migraine aura explains some but not all?

Thank you both for your advice,

K xx
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Old 06-01-2015, 06:14 AM
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Welcome to CWE, Kitty1.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

I have temporal lobe epilepsy, so I am sorry that I cannot help you there.
It is how we live in the present that determines how we live in the future. - quote unknown
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Old 06-01-2015, 03:35 PM
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I get migraine auras and no headache (I used to get the headaches when I was younger but that part mostly stopped)--but I get everything else that comes with migraines, such as nausea, sensitivity to light and sounds that feels like an icepick in my eye or ear. I also have epilepsy and they are considered sister conditions--people who have epilepsy often have migraines. But you have a lot of other visual and sensory phenomena that sound less like migraines and more like seizures. My palinopsia happened once and was followed by very characteristic silent migraine symptoms and nothing more--my seizures have never had visual symptoms so I've never experienced the two mixed--I definitely don't have occipital epilepsy. With migraines, you typically get the visual aura, then a short break of normalcy, then nausea, light sensitivity, etc after the visual symptoms have stopped. At least that seems to be the normal pattern for most people. I hope your doctor has more answers!
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Old 06-01-2015, 05:29 PM
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Is it possible to have both migraine aura (no headache) and epilepsy?
I used to get migraine aura with no headache (the aura took the form of scintillating scotoma). It was a rare occurrence, hardly more than once a year. But since I've developed epilepsy, the auras haven't happened again. Which makes me wonder if it was actually a simple partial seizure, and it either evolved into the tonic-clonic seizures that I have now, or has been suppressed by the anti-seizure meds I'm on.
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Old 08-10-2015, 07:21 AM
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Hi KittyI,

Although I have not been 100% confirmed as having epilepsy of the Occipital Lobe my previous Neurologist was more than sure due to the visual sensations I would gain leading into a complex partial seizure where I would lose consciousness. The only reason of absolute surety is because it could not be spotted on MRI's, EEGS etc.

Many of the visualizations you describe are much like what I suffer. Visual distortions best way to describe as being much like a kaleidoscope. Objects seem to be turning or moving, nothing sharp in appearance but probably most of all colours appear much brighter. Head tends to feel very light in weight, and sometimes wonder if the rest of my body is even attached. All the sensation appears to be in the head. Very hard to describe

With the problem being in that portion of the brain I was told 15 years ago it would be a very risky surgery due to it leading me blind.

One of my greatest triggers, (which personally leads to me believe it is in the visual portion of the brain), is in my left eye which can be very sensitive in light. No so much flashing lights but bright light, colour red, and the element of surprise. Looking to somewhere and something changing from one extreme of being dark to something bright and vice versa. It's lead me to having a lazy left eye because I usually keep it closed when there is a chance for a trigger which is anytime.

Sometimes if I sit down and relax staring at one object I can pass the next stage of losing consciousness.

Reading the other sensations you mention like hearing things & on the skin I don't seem to suffer but a light nausea - yes.

Hope all comes up well for you.

Last edited by Aussie69; 08-10-2015 at 07:42 AM. Reason: Text Resizing
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