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Showing content with the highest reputation on 01/09/2022 in all areas

  1. It's got to be worth a try . It's not a drug which is should a good thing as us CHers have had enough s--t thrown inside are body's that don't seem to do Any good or if they do they gave major side effect to go with them . Just think if this works for 3 or 4 % of are community it would be a success in my eyes .
    3 points
  2. @BoscoPikoYup, agree with you on all fronts. And perhaps, a more in depth study is exactly what this very preliminary and incomplete study needs is more clusterheads to add to another study. That's really what I said to him in my email was that there is a whole community of us out there at Clusterbusters and some might be interested in being part of a bigger study to try to verify your initial findings. I think the really intriguing thing about this for me is that it's not a pharmaceutical that takes millions of dollars and all kinds of hoops and risks that could potentially take a decade to get approval. You don't need a prescription for tinted glasses. If it turns out to be shit, it turns out to be shit. No harm, no foul. But, let's err on the side of hope.........
    3 points
  3. I'm in the UK, within 90mins drive of the University of Essex. I suppose it's most likely that this effect won't be widely replicated amongst CH patients, but, as others have alluded to, it seems to warrant some attention. Even if it worked for must a handful of sufferers, that would be better than nothing. I would absolutely be willing to participate in any study should one be forthcoming. To be honest, I'm keen just to get my hands on some glasses now. Seems like little to lose in giving it a go.
    2 points
  4. There were studies done. Abt staring into a green light on a completely dark room - for like? 3 hours? I remember it said they were bored to tesrs sitting and staring into the green lite. It was to ameliorate migraines? headaches? Ill look for it... and the study concluded it helped. One was done at harvard , another at a texas hospital, another st univ of arizona. W reduction of 50% of headaches.... appatently theres litersture abt it. The green light resets circadian rhythm by way of melatonin. They said shining blue light into blind people's eyes while they had a migraine? Made their pain increase... one researcher said gis brother complained alot abt headaches. He told brother take some ibuprofen. Brother said, no. Ill just go sit in the trees for awhile till i fell better. Gotta admire the way our human brains work things out
    2 points
  5. Here! Here! I heartily agree!! So many drugs thrown at me. So many bad rxns. Such a weird deal. Hardly anyone understands it. Its pretty horrendous. Jailed? Mhh's? Its a special little nightmare. i agree- its so good its not a drug. And if it ends up being an oddity that pink helps some ppl? And yellow.green helps few others? Its just another modality to add to the bag of trix to turn to for help. Slows down the frustration when u have options s available.
    2 points
  6. Awsome response! Agree 100%
    1 point
  7. Bohm, I don't disagree with you. Move it forward and do what you do. Every effort to help even one is worth it!
    1 point
  8. @BoscoPiko Those were my thoughts exactly. However, if you read his response, he now says he has successfully treated 2 out of 2 clusterheads. And this is a legit paper. It's peer reviewed. So I think it's at least worth exploration. I mean, this is totally different than a drug study that comes with all kinds of hazards and big pharma. If those of us interested in giving it the old college try just need to find those color tint machines and then get some glasses to see what happens, I'm certainly willing to add myself to the mix. I mean if I have vitamin D and busting and one other thing that seems to make a real difference, it's absolutely worth it. Then again, it could turn out to be crap. But we are all used to crap. This is one of those things that sound kind of crazy and comes out of left field and doesn't appear to make a lot of sense at first. But, I said the same thing about busting 20 years ago. I will reach out to Bob and Ainslie since I have worked with them doing the zoom cluster support groups and I think I probably know them best out of the rest of the staff and Board. We'll see if we can generate some interest here on the boards and see what interest the Board has. Regardless, it's worth a shot.
    1 point
  9. I suppose if it helps even one cluster head it's worth a shot. It is worth questioning why this was only tried on one individual and why when it worked for him was it not tried in a study on multiple CH sufferers? The writeup is also a bit old so I can't help but questioning why it never went any further? Trust me I want to believe that there is something that works but this one is hard to digest with hope...
    1 point
  10. Bohm great job buddy. Sounds interesting. I'm willing to jump down any rabbit hole if it help people myself included . I'm guessing it would be a good idea to get in touch with Bob or dome1 on the board
    1 point
  11. So, it sounds like Prof. Wilkins is interested in putting together a study. So how does that work with Clusterbusters? Should I contact Bob or someone on the Board to let them know he is interested or do we just point him to the message board to try to recruit participants? I'm happy to help organize something like this. It could be a rabbit hole but I think it's in our collective interest to check out every rabbit hole out there.
    1 point
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