Haven't seen anyone talking about this. In my 15+ years suffering from this disability, I only ever came across 2 people who were completely cured. One was from unrelated pallete surgery (which points to a sinus nerve connection), the other through neurofeedback.
I met a bio/nuero practitioner and underwent several YEARS of treatment. Initial diagnoses shows pretty clear imbalances in my brainwaves, specifically my high Beta, as well as failing a Heart Rate Variability test spectacularly.
I could type books about this (and probably will over the course of this thread) but in short, I had some positive results. After about 2 years of practice with particular biofeedback techniques, I had a "breakthrough" when performing a technique (on an airplane, no less) which resulted in significant reduction in my sensitivity to CFL's. I know, it sounds stupid to think a meditative technique could actually work, no one was a bigger skeptic than me, but I can't dispute the results. It wasn't really like a switch, my CFL sensitivity was slowly getting reduced over the years and the breakthrough seems to been the biggest jump forward.
My LED sensitivity wasn't really affected all that much. I tried doing nuerofeedback and bought a home kit to continue my practice at home. It's really hard, y brain absolutely hates it, but it does prove my brain works very differently. As a test I ran through a session an on a scale of 1-40 I achieved a 16, an this was after about a year of practice. I had my wife go through a session, who had never had a nuerofeedback session in her life, and first time she scored a 35. I put my friend through the same thing and he scored a 37. So there is clearly some deficiency there. I'm going to keep at it, but it takes a lot out of me and I can go months without a treatment cause honestly it sucks and I hate doing it 🙂
Curious if anyone else has tried these therapies. My therapists opinion (and she was careful to call it opinion, not a diagnosis) was that there was some underlying irritation somewhere that was causing my nervous system to not react properly, and specific stimuli (in my case lights) were improperly handled due to that and caused the brain to react incorrectly, which then caused the muscle contractions and pain. He idea was by getting my brainwaves corrected via nuerotherapy and my sympathetic and parasympathetic nervous systems balanced through biofeedback it may help. While it absolutly has not been any cure at all, it has certainly taken me a few steps down a path in the right direction.
Just wanted to share.