Hi all. I have now gone from chronic to pain-free. This is not BS. I have literally not had even a single CH since early March of 2017. And the answer to how I'm pain free will be surprising because I now believe the cause of my CHs was 'staring me in the face': my pillows, mattress, and every other source of dust mite protein accumulation.

Here's my story.

As some of you may know, originally, I had managed to break my chronic CH cycles (I was episodic from 2007, and went chronic in mid-August 2014) with a combination of NSAIDS (Vimovo+D3) on a daily basis (back in Dec. 2015), but the CHs returned after about 10 months (in Oct. 2016). At the same time, however, I also experienced something that would prove a sort of Rosetta Stone for understanding the cause of my CHs: a skin rash. In retrospect, for most of my life, I simply thought I had itchier skin than most other people. I would periodically get a bump or a few bumps on my skin in different areas, but I never really paid it much mind, as they seemed to disappear nearly as soon as they occured. But by Nov. 2016, exactly along with the return of my CHs, I also had developed an obvious enough skin rash over a significant enough portion of my body that I went to the doctor for it. She confirmed with a biopsy that it was, in fact, a histimine (allergic) reaction. She gave me cetirizine, and that did reduce the rash to the point that it was almost gone, but the CHs were still pretty much daily. I waited until early March, 2017 for the allergist appointment, but just before that, I went to Cuba with my wife. There, despite taking vast quantities of Benadryl, (at one point, at the maximum dose every 4 hours for the last 4 days) and Cetirizine, I was still getting hit with 2 and even 3 headaches near the end of my stay. The rash was also coming back, though it subsided somewhat after my daily shower for a while, always to be worse in the morning. Suffice to say that, by the time I came back from Cuba, I felt like I was nearly dying.

Then my allergist appointment came up. Within minutes of the administration of the test, there were 4 large (about the size of a quarter), red discs on my left arm, right near each other. "That's dust mite protein," said the nurse who had administered the test. The allergist also confirmed the results. "You're not allergic to the dust itself, per se, it's that you have a VERY strong allergic response to the proteins found in 'waste' (ie. shit) of dust mites." B I N G O!!! This all made sense!!!! Finally! Of COURSE I would wake up with a CH within minutes of putting my head down on a pillow, or after lying on an old sofa, or after letting my cat lie down next to me. I'm ALLERGIC to dust mites!

But as a 10 year veteran of CH, I was a little skeptical. I had taken an allergy test many years ago, when I was about 18, and although dust mite protein had shown up, it was a fairly mild reaction back then. I had to absolutely confirm/deny this new theory. Perhaps I WAS allergic to dust mite proteins, and they were giving me rashes, but were not linked to my CHs? But I had to give this a try. So I went immediately from the allergist's office to the Bed, Bath and Beyond store and bought a dust-mite proof queen-sized mattress cover, and 4 dust-mite proof pillow cases. I also wiped down every single surface in our bedroom (there is no carpeting in our new house, so that's a very good thing), and this is very important, I also changed all the bedsheets. I then took my usual cetirizine, trazadone (a sleeping aid) and 10mg melatonin supplement that same evening. That night, I had the most complete, deep sleep I had had in literally years. Not only did I not get a CH (and I had been getting them chronically again for 4 months leading up to that very night), but I did not even wake up to go to the bathroom, or for any other reason. I simply slept soundly for about 9 hours. I actually felt rested for the first time in years. Due to the success I started having with reducing my dust exposure, I also decided to start taking allergy desensitization injections. I've just recently completed the one year weekly regimen, and now I'm on the once every 3-4 weeks routine.

Since that night (March 10th, 2017), I have not had single CH. My regimen was simple. Cetirizine (max dose daily until you can reduce--see below). Dust-mite proof covers on the mattress and pillows. They don't have to be expensive, but they DO have to explicitly say they protect against dust mites. If they don't mention dust mites, they're probably not fine enough mesh. I use 'Protex Premium' brand, like these:

pillow covers: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

mattress cover: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

But it's not enough to have mattress/pillow covers. You must also remove dust mite dander from your sheets and pillowcases and comforter every two or three days. I change the bedsheets/pillow cases religiously every 2 or 3 days, and I wipe down the bed frame and the only other two pieces of furniture in the room, as well as the floor. Bascially, I reduce my exposure to dust as much as humanly possible. I don't sit on old chairs unless they are leather. I don't sit on old sofas if I can help it. I avoid places as much as possible where accumulations of dead skin will build up. I even got rid of my old sofa and bought a slightly used leather one, because pillows, sofas, mattresses, etc., are repositories for dust mite crap (protein).

Even this, however, is not enough on its own, so I have also initiated the allergy injections. The injections will probably take 2-3 years to complete, but this really seems to be working.

So, to recap, my 'cure' for my CHs is simply:

1) This is the first, best, easiest and cheapest step: Dust mite-proof pillow and mattress covers (also cover/remove any duvets, as they are probably full of dust mite protein, too)/dust free sleeping environment (sorry, no kitty cats or dogs, either--they are covered in dust mites). Also, stay away from places/furniture that likely contains high concentrations of dust. They will overwhelm every other provision you are taking.
2) Cetirizine daily -- maximum dosage, until you have gotten far enough along in your dust mite allergy injections to slowly reduce your dosage)
3) Dust mite desensitization injections. This is perhaps the 'cure' part of the treatment, since, in theory, you will never get another CH once you have successfully completed the desensitization process. These will start out as weekly for about a year, then become every 3-4 weeks for perhaps 2 more years.

So far, after a over a year, this has worked for me. I hope all of you with CH will read this and at least try out what I did. If you're chronic, as I was starting in August of 2014, you likely have nothing to lose and everything to gain. I got my entire life back, and I hope at least some of you out there will, too.

CHers sometimes go into remission for a year or even several years. Also, CH triggers vary between sufferers. So, although it is possible that eliminating your allergies improved your CH, it is far from certain that you find the cure for all of us, or even yourself.

Note that CH was once called "Histamine headache", because it was found that sufferers produce a lot of histamine during bouts. Only trying to treat CH with anti-histamines failed, because histamine is only one inflammatory agent that is involved in CH, and is clearly not the root of the disorder. So your case is

Having said that - Batch had suggested here that an allergic reaction may, in certain cases, exhaust D3 reserves and make us more sensitive. Maybe in your case an acute allergic reaction indeed was THE major trigger so treating it prevents your CH attacks as well.

Callico wrote on Mar 27^th, 2018 at 2:31pm:


I'd like to put paid to and address the 'misdiagnosed' theory right now. I was diagnosed by Dr. Roberto Giaconne, a neurologist and CH specialist in Ottawa, Canada, nearly ten years ago. On my very first visit, I actually started to get a CH, and he personally saw the tearing in the eye, drooping eyelid, and heard my descriptions of my symptoms (onset between 20-45 minutes after going to bed, daily headaches over a period of weeks, in 'clusters', initial onset in early adult years, etc. etc.

He told me that I absolutely had the classic symptoms of cluster headache, no doubt about it. I have been seeing him for my CHs since, and at no point has there ever been any doubt in his mind whatsoever that I am presenting the classic and established symptoms of CH. He is one of the leading CH doctors in Canada. There is no chance that I have been misdiagnosed. Is it possible that there are variations withing the CH spectrum? Possibly. But I am a CH sufferer plain and simple. I have gone from being an episodic sufferer, back in 2008, to a chronic sufferer back in August of 2014, at which point I took the question of how to stop my CHs into my own hands, as my specialist told me that his known options were extremely limited and far from consistently effective. I am a Cluster Headache sufferer plain and simple. 

Thank you for your validation, Batch. It means a great deal to me that somebody with your high standing and reputation in the CH community is doing this, as I really believe I have figured out how to completely stop my CHs permanently. I truly want to help everybody else with this insidious, devastating medical condition, and that is my only motive. I don't care about fame or recognition beyond getting the basic treatment out to the CH community.

My CHs are now gone. They are gone and I know exactly how to keep them from coming back. I think that's worth publicizing. I am currently waiting for my next follow-up appointment with my neurologist, where I will outline all the data I have for him in the hopes that he will write about these findings and publish them so that CH sufferers everywhere will be able to treat themselves and rid themselves of this demon permanently.

Finally, I will happily continue to add my experiences to this thread, answer any questions I can, and be the best resource I can for any who wish to stop their CHs once and for all.

It is important to understand that the necessary steps are draconian. You cannot 'sort of' follow them. There are three basic categories to these steps:

1) Environmental: You must reduce to the maximum extent practically possible, any and all sources of dust mites and most critically, their waste material. It is important to understand that dust mites "feed on skin flakes from humans, and animals, and on some mold", so being exposed to the dust from, say a saw mill, or other, non-organic sources is not the issue. It's your skin flakes and the skin flakes of your pets that are feeding the demon that causes your CHs, so the idea is to reduce/eliminate every possible source or repository for skin flakes to feed dust mites! This means new pillows with dust mite-proof pillow case covers, dust mite-proof mattress covers, very regular (every 2 or 3 days) change of bed-sheets and pillow case covers, removal of all carpeting/rugs in your living environment, religious wiping down of surfaces in your sleeping environment (and ideally, throughout your home) where dust accumulates. I have gone so far as to put a hepa filter on my forced air furnace and change the furnace filter every month religiously.

2) Medical: Take vitamin D3 as per Batch's regimen. Personally, I have found that with all of the other steps I have taken to reduce my exposure to dust in my environment, my D3 dosage requirements are now fairly modest, but you must not let them fall below a certain threshold, or you will likely become symptomatic again quite soon. I am also taking 1-20mg cetirizine (also commercially sold as Allertin) on an almost daily basis, and I take trazadone and melatonin to help me sleep. These last two items may not be necessary for other CH sufferers, but for me, I often still have some difficulty falling asleep without them.

3) Hygiene: As a dust mite allergy is excerbated by exposure to dust mite protein, that means changing your clothes every day, and not wearing the same pants/jeans more than a couple of days, if that, especially if you sweat in them at all. You will also likely benefit (as I do) from daily showers and a bath at least once a week in lieu of a shower, where you use coal tar bath oil like this Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , and either a coal tar-based shampoo, or a topical cortico-steroid shampoo like Clobex. I'm willing to bet that if you get CHs, you also get a really itchy scalp, and other skin itches/irritation, but you were probably ignoring those, thinking they were secondary in importance or unrelated to the cause of your CHs. Wrong! They're caused by the same damned thing!

And that's it! As little dust mite protein in your living environment as you can get, and adequate doses of vitamin D3 and cetirizine, and extremely conscientious hygiene practices. Looking forward to answering any and all reasonable questions!

Sam,

5 days of load dosing the D3 Regimen is not usually sufficiently long to see the benefits. It takes a few weeks to complete the loading dose schedule, to get your serum levels high enough.

Did you get your bloods done before starting on the Regimen?

I am not a lover of domestic animals, but when the kids were young we had a German Shepard for a few years and then a cat for the next 14 years. Bloody hairs everywhere.

No pets for the last 5 years and no more will be tolerated.

I don’t think my Clusters were effected then and certainly didn’t improve when we became pet free.

I’d suggest completing the loading dose stage and get your bloods done then. Hopefully you will be feeling an improvement by then.

Peter.

As per Peter and Sean, whilst some people get a response in 5 days, it can take longer for some people.

The D3 doc (link below) has a lot of info about what to try next and has been updated by Batch to include feedback from people for whom it didn't work at first but with the additions it did.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And pets aren't the direct cause for all CH. We had cats before my CH started and we've still got cats whilst D3 is keeping my CH at bay.