Which specialist would you go if you suspected to be photosensitive?
Everyone here needs to get an EEG test for epilepsy
anyone have experience with the new home eeg kits? $500
Did anyone else from this thread go for an EEG and get a result one way or another? Very curious about this as the more I read about it the more I can see how the symptoms align in certain places.
I'd love to go for an EEG but I do worry that a positive result would lead to losing my drivers license for a period which is impossible for me. Is that the case, even if you've never had anything other than a focal aware seizure (which is what I suspect I've had, triggered by temporal dithering sensitivity).
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I've been working with a neurologist for a while, and she suggested that an EEG and MRI may be helpful to potentially rule out neurological conditions. I specifically asked if it would be possible for me to do the EEG while using a problematic device (I'm bringing an iPhone XS Max, which causes symptoms very quickly in my case), and she said that would be fine. She seemed relatively confident that they may be able to see what happens to my brain in real time while looking at flicker.
I'll definitely post back here with my results, I'm really curious if they'll be able to see anything.
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bkdo Do your prism glasses help with the iPhone XS Max at all?
I will note that EEG is sometimes abnormal even with "normal" patients. But I would be very cautious about taking any kind of anti-epileptic drug if you get an abnormal EEG; they can have brutal side-effects (and apparently a minority of patients can have permanent ones). I don't know what other non-surgical treatments are available. But lots of Doctors hand out pills like candy.
If you are able to get a doctor saying you have abnormal EEG while looking at the XS Max, that could be something to take to Apple.
By trade, a Neuro-ophthalmologist should be the most "helpful" in treating our condition, but a few folks on here have found them not helpful. I've yet to try one.
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ryans Do your prism glasses help with the iPhone XS Max at all?
Yeah, the prism glasses do help for sure. Unfortunately, not by enough to make OLED phones okay for daily use though. I don't think I'm going to wear them for the EEG, I want to make sure I get symptoms (Never thought I'd say that, lol)
ryans I will note that EEG is sometimes abnormal even with "normal" patients. But I would be very cautious about taking any kind of anti-epileptic drug if you get an abnormal EEG; they can have brutal side-effects (and apparently a minority of patients can have permanent ones). I don't know what other non-surgical treatments are available. But lots of Doctors hand out pills like candy.
Thanks for the heads-up. Yeah, I don't think I'd be comfortable going on anti-epileptic drugs on a long-term basis, especially if there are nasty side effects.
ryans If you are able to get a doctor saying you have abnormal EEG while looking at the XS Max, that could be something to take to Apple.
100%. If the doctors give me any kind of neurological diagnosis, I'm definitely going to call the accessibility department back and supplement my other info.
ryans By trade, a Neuro-ophthalmologist should be the most "helpful" in treating our condition, but a few folks on here have found them not helpful. I've yet to try one.
I asked my ophthalmologist about it - the official response from the neuro-opthalmologist that she referred me to was:
"After thoroughly reviewing your file, I do not feel that I have much to offer you for your sensitivity to flicker. I suggest that you reverse the contrast on the screen to see if this is helpful. I don't know if you have already tried this before. I feel that there is a low likelihood that a visit with me would add anything more, but I am willing to see you if you'd like to come in."
My current plan is to get an EEG and then see a neuro-opthalmologist. If nothing comes of that, then I'll probably get the MRI. From there, I have no idea ️
Is anyone else planning on doing an EEG or MRI? Would be useful to compare our results and see if there's anything in common.
bkdo A couple of years ago I was taken a brain MRI because of strong twitching of the eyelid of the left eye when exposed to LED lighting and electronic devices (in addition to unbearable eyestrain and continuous tears / excessive photosensitivity). The MRI was negative and there was no difference between the left and the right side of my brain (if I understood, the eye doctor was after differences between the left and right optical nerves).
I am seeing a neuro-ophthalmologist on a regular basis. She has never found anything anomalous. She prescribed a visually evoked potentials (VEP) test, that did not highlight any issue. Based on those results, I was told that an EEG was not necessary. I just repeated the VEP test after a year. Preliminary results were better than the year before.
A few days ago my orthoptist gave me jump vergence exercises, the goal being to jump from convergence to divergence 20 times within 2 minutes. After figuring out how to get a single image beyond the divergence prism, a day later I could easily do 30+ jumps in 2 minutes using my right eye. I was told it was not necessary to do the exercise with the left eye, but I was still curious and tried. It was much harder. However, after an initial struggle I could do 20 jumps with the left eye as well.
Despite there not being a clear diagnosis and my tests being all okay, my eyestrain and neck pain have been pretty bad for a month after some updates passed through my laptop. I cannot find a way out.
AGI A couple of years ago I was taken a brain MRI because of strong twitching of the eyelid of the left eye when exposed to LED lighting and electronic devices
That's strange, my neurologist specifically asked me if I had any kind of facial twitch or spasm while viewing flickering screens (I don't), I'm surprised that they weren't able to find anything with the MRI if you actually did have those symptoms. Was there any indication on what was causing the spasms?
AGI Based on those results, I was told that an EEG was not necessary. I just repeated the VEP test after a year. Preliminary results were better than the year before.
I don't know exactly what the VEP test entails - did you have flicker symptoms during the test at all?
AGI Despite there not being a clear diagnosis and my tests being all okay, my eyestrain and neck pain have been pretty bad for a month after some updates passed through my laptop. I cannot find a way out.
I'm really sorry to hear that. I know it's incredibly frustrating to have new updates suddenly cause issues ️
I don't recall if you've mentioned this already - have you had luck with an eyepatch or prism lenses before?
I have had more MRI's than I can count as well as an EEG and live brain visualization test (they hook you up to electrodes and monitor things while exposing you to different visual stimuli). Nothing abnormal was found at all. I also have passed every bison test, field acuity test, and every test they have thrown at me.
The only outlier was a biofeedback analysis which should lower than normal "high beta" brainwave activity
Did they allow you to use one of your problematic devices during the EEG or brain visualization test to see if that caused any kind of reaction?
Also, they specifically asked me to come in for the EEG as sleep-deprived as possible, since part of the test involves checking my brain while I'm dozing or sleeping. Have you had an EEG with that parameter as well?
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bkdo Was there any indication on what was causing the spasms?
Twitching was almost solely on the left eyelid and sometimes around the left side of the mouth. After seeing me at the clinic 4 times within 2 weeks and observing the twitching himself, the eye doctor prescribed the brain MRI. The communication was not great because of the language barrier but the neurologist could speak better English and told me that they were after any anomaly of the left optical nerve, specifically, if it was pinched somewhere. Ironically, he concluded that not only the left and right nerves looked the same, my brain looked very healthy.
bkdo did you have flicker symptoms during the test at all?
I had my head inside an integrated sphere for about two hours. I do not have technical competencies in this field, but in some cases I was bombarded by bright flashes of light that I would call stroboscopic. Only in that case I felt moderate symptoms. I cannot tell why electronic devices can instantaneously drive my eyes and neck way more insane than those flashes. Perhaps the frequency is different?
Otherwise, most of the exam consisted of following a LED light of modest intensity traveling from the center of the sphere to its far right, then back to the center and to the far left, moving only my eyes. A part of the test simulated night conditions. That is where I am borderline. I was told to try increase my intake of vitamin A.
I am due to see the neuro-ophthalmologist soon to discuss the VEP results. I will let you know.
bkdo have you had luck with an eyepatch or prism lenses before?
Kind of. I used an eye patch intensively at the end of last year. Perhaps too intensively (like, hours a day while I was fighting new problematic working conditions (new screen and LED lighting) and while I was working around the clock. One Saturday my eyes sort of collapsed. Like, I could not even look at a road sign without my eyes crossing. I freaked out and stopped using the eye patch. Also, those days I saw an optometrist to test for the Irlen syndrome. He suggested me trying reading glasses (but not the ones for presbyopia - specific glasses to correct my slight tendency to converge excessively) and he warned me about the potential downsides of using an eye patch. He found it useless and potentially harmful in my case. Whereas the orthoptist had agreed to the eye patch and had said that there was no risk of developing amblyopia at an adult age.
bkdo they specifically asked me to come in for the EEG as sleep-deprived as possible
Interesting. One of my long-standing issues is sleep-deprivation. However, I have never had issues when completely sleep-deprived if I was using a "good" device. Also, two days ago I nearly skipped sleeping at all, like, I just had a 2 hour nap between 6 and 8 am. My eyestrain was better than other days…I recalled reading the same from other guys of this forum.
Gotcha. From what you've described it sounds like our condition may either be beyond the scope of an EEG or potentially not even neurological at all. I'm getting my EEG at the end of April, I'll definitely post my results and anything useful I learn from the test.
AGI Ironically, he concluded that not only the left and right nerves looked the same, my brain looked very healthy.
But no explanation for the twitching?
(I'm glad you got a clean bill of health for your brain otherwise though)
AGI Only in that case I felt moderate symptoms. I cannot tell why electronic devices can instantaneously drive my eyes and neck way more insane than those flashes. Perhaps the frequency is different?
Yeah, that's definitely plausible. There are a ton of factors that influence flicker, their testing device could easily have a different implementation than modern electronic devices. Did they let you use a problematic device (Phone, tablet, etc) during the test at all? I'd be curious if that showed different results at all.
AGI Also, those days I saw an optometrist to test for the Irlen syndrome. He suggested me trying reading glasses (but not the ones for presbyopia - specific glasses to correct my slight tendency to converge excessively)
It sounds like they found BVD, did those prism lenses help your symptoms at all? Also, I've heard of Irlen syndrome before, but wasn't sure if it was worth exploring. Did you have any success in that area?
AGI One of my long-standing issues is sleep-deprivation. However, I have never had issues when completely sleep-deprived if I was using a "good" device.
Same for me as well. I'm hopeful that they'll find something relevant during the EEG, I'll definitely post back here with my results.
I actually had the same thought. I recently bought an iPhone 13 Pro Max and when using it I got headache and pressure in my ears. Then, after 3 days, I started getting headaches and closed ears feeling like on plane every day. I dropped the phone but even 3 weeks after I still have those symptoms, although much weaker.
I figured it can't be just eyes, in facts my eyes feel okay. It must've triggered something in the brain and the brain is now recovering from it. Got an MRI - it's all good. Tried using the iPhone - symptoms return just after several minutes. Funnily, never had anything like that before even though I've been using Samsung S10+ for 2 years and has, supposedly, an awful PWM.
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bkdo Did they let you use a problematic device (Phone, tablet, etc) during the test at all?
You cannot do that. Your head is inside a half sphere. Hands have no access, and you need to follow with your eyes the light signals coming from the end of the sphere opposite to you.
bkdo It sounds like they found BVD, did those prism lenses help your symptoms at all?
My eyes were assessed orthophoric at distance with a 4^ esophoria at near, and normal ocular movements. I was not prescribed prism glasses. I use loose prisms for exercises.
bkdo Also, I've heard of Irlen syndrome before, but wasn't sure if it was worth exploring. Did you have any success in that area?
I bought 12 overlays of different colors for testing, but it is not straightforward. In general, I feel that any overlay helps a bit because it "removes" the white of the screen. But it is not very scientific…
I had an EEG and MRI done last year, both came back negative. However I’m absolutely having focal aware seizures that come in clusters for a week or two then calm down for a few months. This is clearly the issue with me, temporal lobe epilepsy. It’s why I can’t tolerate fluorescent lighting and why I can’t tolerate screens. I’m going to keep trying different neurologists to see if I can get diagnosed and treated. I agree that anti-seizure medication is a last resort but if it can allow me to be under fluorescent lighting without issues it will change my life. The focal aware seizures are getting more frequent, my memory appears to be getting worse, and I want to prevent any more severe grand mal seizures down the line, which can totally destroy your memory.
screenjunky I would agree this is legitimate inquiry. I personally having some weird neuron activity and tension in my frontal lobe after exposed to strain causing device - in my case - its macbook (both external and non-external screen). But I do not have this activity at all using windows 10 (both external and laptop screen). That is a reason I though it is important that really do not take an ignorant attitude, just become some other people claiming they are ok. But I do not agree that you should run and consume drugs, without eliminating or trying A, B, C routes to see if you can eliminate external causes of it. Medical professionals will only observe effects, but not causes (at least this is how I feel in my case).
I would urge to investigate more areas as a cause of it:
- Emotional attachment (e.g. neuro-marketing) and prolonged screen time through meetings and work.
- Screen flickering long term effects.
- Internet addiction normalization.
- WIFI EMF. I have been investigating this area a lot, testing different setups, speaking with different people, reading scientific studies (from various sides) - WIFI EMF that is set at maximum 30dB transmit power (WIFI is transceiver, and transmitter is the one that emits EMF, especially on video calls where it needs to upload a lot of data, but also during receiving as it coordinates communication channel) - prolonged use of it has potential negative long-term effects, there are many scientific studies done, but unfortunately just like it was with cigarettes smoking, there are equal amount of studies claiming otherwise. Yet every EMF emitting device has disclaimer regarding potential blind spots of long term use.
Web Medication can be scary but it's not the end of the world, either. I take topamax and while it hasn't helped with my ability to tolerate "bad" screens, it has helped with my ability to tolerate "bad" lighting and bright lights overall. The store next to my apartment building has such bad LEDs I used to hold up my hand and block my eyes every time I came home after dark, but after raising the dose on my meds from 100 to 150mg, it was fine. (I'm on 200mg now.)
I had side effects at first, but I stopped and started again with extremely slow ramping up of the dosage (instead of going up 25mg every week, I went up 25mg every couple of months and cut the pills into fractions to inch it up slowly). That worked great for me to minimize side effects.
I have a diagnosis of chronic migraine, not epilepsy, but I also suspect that there is something more involved. I had the EEG test a few years ago and while it didn't trigger anything during the test, at the very end of the test, like at the moment they were telling me "OK, you can get up", I felt very strange, almost like I had fallen asleep and then was about to have a panic attack (just laying on a couch calmly) and then felt very foggy and weird and confused and ended up having a vicious migraine a couple of hours later. I wondered if they just turned off the recording device too soon.