Bohm

Thank you to all of you who have made this message board a place for community and safety and compassion. You have saved lives and offered hope to me and so many.

@paul B, One of our Clusterbusters Board Members Joe McKay was a 9-11 NYC Firefighter and he is actively engaged in the burn pit issue. You can find him at joem@clusterbusters.org or here is his Facebook page. https://www.facebook.com/joseph.mckay.182

@charles87sf I'm betting most of us have stories about clusters coming and going when they aren't "supposed" to. As everyone on this thread has already mentioned, it's sort of a crap shoot. You hear stories about folks getting clusters on the same day, same time, on a very specific schedule. And that certainly happens. But my guess it's also almost as common for them not to follow a strict schedule. But, you are on the best site in the world for clusters and you are hearing from folks that have more collective experience and knowledge than anywhere out there, including strictly medical sites. Don't hesitate to reach out!

@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.........

@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.

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.

So I heard back from Prof. Arnold Wilkins at the University of Essex and this is what he had to say about his research into the glasses. Thank you for your letter, which I was very pleased to receive. I now have two out of two patients whose cluster headaches have remitted with precision tints. The tints were both provided by the Intuitive Colorimeter, but they were not the same. The second patient’s tints did not absorb short wavelength light. This leads me to suppose that the critical feature is that the tint increases visual comfort, and that the Colorimeter is a good way of selecting the tint. I would be extremely interested in setting up a trial, perhaps in collaboration with your organisation and a medical advisor. The Intuitive Colorimeter is widely available among optometrists in the UK but there are few individuals with the machine in the USA. I am currently getting together a list of US practitioners who have the machine and might be interested in being involved in a study. A few points about funding such a study. The firm that make the Colorimeter and tints have offered 10 free pairs of the lenses in the first instance. So far, practitioners have offered their time for the assessment without charge, but it would be nice to avoid taking advantage of their goodwill. As I am sure your will be aware, 2/2 patients without cluster is a good ratio. I have hope that we just might have stumbled upon a really useful non-invasive treatment. I will write again when I have a list of US practitioners. In the meantime, if any of your members live near Ottawa and wish to try precision tints then I would recommend that they get in touch with Karen Monet of Opticalm (https://www.opticalm.ca/) Best wishes Arnold Arnold Wilkins Emeritus Professor University of Essex UK

I have reached out to the author of the article, Prof. Wilkins at the University of Essex to get more information and mentioned all of us lab rats who could be interested in trying out such a device. I'll post again if he communicates back.

@BoscoPiko, When I started the D3 regimen many years ago for the first time, the magnesium was not friendly with my stomach. I spend an inordinate amount of time in the john. Batch recommends magnesium chloride, glycinate, oxide, citrate or malate but they are all just binders for magnesium. I understand that different binders may affect how well it's absorbed into the blood stream. Different types of magnesium binders have reportedly slightly different effects and some work as a strong laxative. I read that magnesium taurate seems to be well tolerated with digestion so that's what I went with. It's essentially magnesium with a taurine binder. I'm convinced the taurine that is in energy drinks such as 5 hour and redbull has some kind of effect on clusters and so that's another reason I went with it.

Yup. The eye twitching started for me 4 or 5 years ago. I also use Magnesium Taurate as it seems to be easier on my stomach and it appears to make a difference. No eye tremors this cycle.

After 40 years of episodic clusters, its the O2 that has been the most consistent for me. My understanding is that concentrators dont provide 100 percent oxygen which is why the tanks with the cluster non rebreather are so important. Mild clusters can respond to as little as 6 liters per minute of 100 percent O2 if you are running low. But the nasty ones need the high flow. Always keep an E tank in your car during a cycle.

On another note, how often should we be doing blood panels during the regimen? Obviously baseline and then like 30 days in. But what about after that? It would be a struggle for my insurance to grant me too many I think. I can order the at home 25 OH D for about 50 bucks but that won't include calcium levels which is obviously a really important one. If I'm doing this year round, what is reasonable?

Has anyone experienced difficulty getting O2 lately because of the rise in hospitalizations due to the pandemic? My provider Apria usually gives me as many E cylinders as I ask for but now they are limiting the amount requested. I was told I could request up to 10 but they only delivered 4. It took a lot of pleading to get 5 more delivered. Makes me a bit nervous. It's nothing to go through a tank a day and sometimes up to 2 a day. Might have to request an M tank. Wasn't anticipating anxiety over O2 supply. This is Colorado where we still have plenty of ICU beds. Wondering what the rest of the rest of the country and other parts of the world are reporting.

I'm absolutely blown away by this video. I watched it all the way through and while a lot of it was beyond my understanding of biochemistry, I understood enough to get excited about trying the regimen again. I did try the regimen about 6 years ago and while I believe it helped back then, I did not load up on D3 in the beginning and started well into my cluster cycle. It sounds like the loading is the pivotal piece I may have been missing. So, I'm 10 weeks into my current cycle (a particularly nasty one) and I am going to try preloading at the recommended levels and report back to this thread in a couple of weeks. Thanks Craig and Batch for this really well put together source of information and explanation. Incredible detail. I run one of the cluster support groups for clusterbusters and I am going to tell all my folks to watch this.

I was pleasantly surprised to see the conference coming to Denver this year. I will be there. First timer. I have lived in Denver for 25 years and have had cluster headaches for over 35 years and I've never thought that altitude makes them worse. Just stay away from Pikes Peak.