Bohm Posted January 8, 2022 Share Posted January 8, 2022 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 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted January 8, 2022 Share Posted January 8, 2022 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 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 9, 2022 Share Posted January 9, 2022 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 Quote Link to comment Share on other sites More sharing options...
Bohm Posted January 9, 2022 Share Posted January 9, 2022 @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 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 9, 2022 Share Posted January 9, 2022 11 minutes ago, Bohm said: @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. 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 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 9, 2022 Share Posted January 9, 2022 19 minutes ago, Bohm said: @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. One last thing peer reviewd means just that. A peer in the same field has reviewed it and given it a stamp of their approval so peer review means little not a ton to me.. science is trial and error, what did this do? What was the outcome, how could this have been better, did it have the same effect on all or on just some? Adverse reactions had? How many and what was the difference between those affected and those not. Science is to question. I love the effort you put forth to support this community! Quote Link to comment Share on other sites More sharing options...
Bohm Posted January 9, 2022 Share Posted January 9, 2022 @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 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 9, 2022 Share Posted January 9, 2022 2 minutes ago, Bohm said: @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......... Awsome response! Agree 100% 1 Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted January 9, 2022 Share Posted January 9, 2022 3 hours ago, BoscoPiko said: 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? I fell off a horse in chile. Long story. Down there u either lived or died. I had internal bleeding from a ruptured spleen. I was bleeding out for abt a week before i arrived at santiago. I obviously lived. Back in states, my mom took me to be examined at U if Mich teaching hospital. The doc looked at my xrays n doc rpts? And checked me out w okay to ice skate and fall and asked if he cld publish this ONE example of a natural medical recovery? My.mom said yes. Ive argued w a few docs who refused to believe me when i said i ruptured my spleen n no surgery. They said, oh u wld have died then... u just got the breath knocked out of u. I said no, i ruptured my spleen and lived. This came serendipitously, at a time when modern medicine was moving slowly towards a more holistic tx of a person. (Think of bark to bottle? 30 yrs for taxol...) On the basis of that ONE peer reviewed published article, abt ONE yng girl who recovered naturally?- Its now standard tx for yng ppl who rupture their spleens to recover w.out surgery. my neice was one who bruised her spleen (20 yrs after me) and w hosp rest she was okay, no surgery. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted January 9, 2022 Share Posted January 9, 2022 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 Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted January 9, 2022 Share Posted January 9, 2022 5 hours ago, Shaun brearley said: 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 . 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 Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted January 9, 2022 Share Posted January 9, 2022 10 hours ago, BoscoPiko said: 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... 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 Quote Link to comment Share on other sites More sharing options...
drewbie Posted January 9, 2022 Share Posted January 9, 2022 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. 3 Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted January 10, 2022 Share Posted January 10, 2022 If u had a doctor with that special machine to make colored lenses? I dont see why people who signed up? Couldn't just order their glasses thru the mail/fedex? Doctors work together. Many med rpts r written up and r done in conjunction w clinics, hospitals, etc.. that r not always close or affiliated other than for a specific study. Someone who could tabulate on computer the emailed results? Would make this super easy to do.... and a person to type it up and submit it? Wouldn't be so tough, not going to be huge expenses involved, no specialized microscopes, no monstrous expensive machinery, or custom designed drugs, very tiny overhead so if they got grant monies? It cld pretty much go into salary. Specialists usually love these quick and easy experiments. Its a way to publish fast and dirty. And it IS publish or perish, still. Med community should jump at the chance to do this. I would aim the energy towards a teaching hospital? Harvard? Yale? You will want a younger doc, someone w an interest somehow in the field of vision, brain chemistry, migraines, (ok... chas). Harvard and Yale? You already have contacts there. I would reach out to them w a written proposal outlining in rough, what u want? And see *if they might give this to a subordinate young doctor who wants to get his name out there, and wld therefore work under supervision of older doc.... To be honest? I don't believe you would even need anyone to "conduct" this. Y'all here could simply devise the program and institute it. Use a simple questionnaire. Tabulate results? And publish the damned thing. Its not that hard. And you already have credibility built in, due to previous past experiments. These r reading glasses- not controlled substances, right? Just remember? KISS In my humble opinion. Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted January 10, 2022 Share Posted January 10, 2022 In this study u have proposed to do? It would be of utmost interest to delineate hazel eyes. U r looking at 1. Using colored glasses to manipulate melatonin 2. Rose colored vs yellow-green (is that puce???) 3. U r quieting down the occipitals via retinal activity. To see if that affects histamine which affects chas.? 4. I wld love to see some stats on eye colour. I just am left wondering if these glases of yelliw-green work best on hazel eyes? Worse on hazel eyes... wld pink help other eye colors? And working this experiment w blind ppl wld be fascinating (also cld track results on blind ppl w hazel eyes and other colors). Wld be curious if the color glasses (be they rose or grn.yellow) worked best on hazel eys? Or least on hazel eyes, wld it not matter? Does anyone on list work w a good Lions group? Or guide dogs for blind? Hazel eyes. Vit D3. Colored glasses. Vision.. Quote Link to comment Share on other sites More sharing options...
leomburu Posted January 31, 2022 Share Posted January 31, 2022 I have a pair of rose/orange tinted FL41 glasses, it helps a lot with my light sensitivity which gets much worse during clusters (or hangovers, bright overhead lights, overcast days). It hasn't (and I didn't expect it to) stopped the cluster coming, just makes it easier to not live like a vampire or pirate with an eye patch. But as most of you on here, I'd give anything a go if it might help! 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted February 1, 2022 Share Posted February 1, 2022 https://www.axonoptics.com › 6-types-of-tinted-glasses-and-their-benefits This site has many and tells you what each lens color is supposed to do. Anyone wanting to try it can buy them I think. The rose/pink is for migraine. Was developed for migraine too I think. Quote Link to comment Share on other sites More sharing options...
Cpt. Krispy Posted February 1, 2022 Share Posted February 1, 2022 Heck, I’m game for anything. Sign me up if this ever gains any traction. Quote Link to comment Share on other sites More sharing options...
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