persistent scintillating scotomas

[photon]

Hi everyone.

First post! I'll introduce myself here at the same time since it's relevant to my question/issues.

Lil' medical background if it helps: 33 year old dude, no history of epilepsy, born legally blind (macular atrophy, bilateral amblyopia, severe refractive myopia, nystagmus, some degree of CVI too) and some sensoneural hearing loss thrown into the birth-package just for fun I had -20 diopter lens implants when I was 17, wear -2 glasses for reading, -4 for distance.

And a whole lotta tinnitus.

I don't know if I have any forms of epilepsy - certainly I have no 'episodes' of any kind but when speaking to a neurologist and mentioning the persistent scintillating scotomas he suggested I get scans and mentioned that it could be occipital lobe epilepsy.

What I have, looks remarkably like this: *** I can't post links, will update when I can ***

It looks remarkably like a ripple/distortion/cloaking field if you go to the Wikipedia page for Scintillating scotoma and scroll down it looks like the third animation on the far right side. I don't think any images there would upset/offend anyone with epilepsy.

It's mostly there all the time, sometimes it goes away a little, sometimes it's quite bad and it makes reading really, really hard since I already have a ton of eye issues. It seems to come and go, I think it may be triggered from a lot of visual stimuli, or stress, that seems to make it worse but it's hard to say. I don't really see the scotoma itself I see the shimming, ripples it causes but not so much 'it'.

Can anyone relate to this? I really don't have the money at present to go for an MRI, EEG and so on, the scotoma thing does not seem to be getting worse, maybe a little - I'm just wondering if anyone has THIS kind of scotoma in the above animation.

Surely if it's occipital lobe epilepsy it would be an episodic thing as apposed to a near constant thing?

it's very hard for me to separate the eye issues, the scotoma flickers really fast, my guess is around 10-20hz so therefor I know it's not my nystagmus and my ophthalmologist doesn't think so either.

Thanks everyone.

(please excuse brevity and typos, having a bad bout of scotoma and nystagmus right now, in fact!)

 

[Nakamova]

Hi photon, welcome to CWE!

I used to get scintillating scotomas from time to time, though not persistent like yours. Oddly enough, I haven't experienced them since the onset of my first seizure (a grand mal). My hunch is that they may have been a form of migraine or minor seizure activity, and they no longer occur because my brain has "progressed" to the bigger seizure stuff.

Both scotomas and tinnitus can be migraine-related as well as seizure-related. Some of the same medications are used to treat both -- perhaps you can ask the neuro to prescribe a med to see if it helps. Other than that, it may help to keep a symptom diary to help track and avoid anything that makes the scotoma activity worse.

 

[photon]

Hi photon, welcome to CWE!

Both scotomas and tinnitus can be migraine-related as well as seizure-related. Some of the same medications are used to treat both -- perhaps you can ask the neuro to prescribe a med to see if it helps. Other than that, it may help to keep a symptom diary to help track and avoid anything that makes the scotoma activity worse.

Thanks

Well apart from living, breathing, I can't see any symptoms at play really, the only correlation I've noticed with my tinnitus is that it gets worse when I sleep less. The scotoma thing doesn't seem to be affected by anything that I can notice, I wake up with it and throughout the day it comes and goes but it's always there, just lesser or worse sometimes. I do get bad headaches from time to time but not 100% sure if they are migraines and the scotomas aren't worse during the headaches. I've only ever had one case of the classical zig-zag, rainbow aura, once but it was not during or proceeding a bad headache.

It's all very strange.

Hopefully when I have money for an EEG and other tests they'll be able to give me some proper indication.

Thanks