First of all, I loved going thru this thread again just now. And I loved seeing the updated tips on how to battle this thing.

Anyway, I've fallen off the vitamin D of late. I'm not sure when I stopped. Couldn't have been that long ago. Maybe a week. I started experiencing shadows yesterday and today. Typically, I'll get gradually increasing shadows for 3-4 days before a cycle begins and then I'll get 3-4 days of Kip 6 headaches until a kip 9-10 hits. So the shadows are something of a warning system of sorts. Pre-headaches. Whatever you want to call them.

But, since I started using vitamin D to fight this thing, I have evidence in my headache journal that I've busted at least two cycle attempts by this disease. Once in April 2017 and once in January 2018. Even to this day, I'm skeptical over this treatment, but I have numerous passages written in my journal that are swearing that the Vitamin D is actually stopping the headaches from happening. So I'm cautiously optimistic here. I also had shadow bouts in both June 2017  and June 2018, but they were so short lived (less than two weeks) that I'm not including them here. Vitamin D increases may have knocked those out too.

I woke up with shadows this morning and have had them thru the day. Took 20K vitamin D with co-factors with coffee. Around 1pm I went to the beach for about 90 minutes. 15 of those minutes was without sunscreen to max out Vitamin D from the sun. Floated in the ocean for a while. This basic routine is what I did to break up the last two cycles, so we'll see if it works again.

I did a turmeric shot with a vegan smoothie for lunch. I'll probably go back to the beach for a swim again tomorrow. It's been 82 F every day here so it would be pretty stupid of me not to take advantage of the part of the world I live in if I have the time, which I do.

For some basic background info: I started getting clusters at the age of thirteen, and they absolutely destroyed my life. I had no idea what was happening, my schooling tanked, my family grew to hate me, my friends and teachers too, my behavior became toxic, my anger response was extremely high, and no one cared to understand why nor help. I was just chalked up as a troubled kid.

School and family fell away, and I suffered from headaches regularly but still what I would call episodically. Probably at least four months out of every year from age 13 to 22 were plagued by at least one headache per day.

After age 22 for some strange reason, they became less frequent. I would get hit with a 6-8 week cycle once every two years or so for the next eleven years.

In July 2016 at age 33 the cycle started up again (after the typical two year break). About five days in, I was hit with a Kip 9 headache and went to the ER because I thought I was having an embolism even though I obviously knew that pain all too well. The ER doctor suggested my description of the pain and my history of them sounded like "cluster headaches." I'd never heard a doctor say those words to me before. I googled it when I got home and sure enough....

The past few years have been very hard. I had a severe cycle from October 2016 to January 2017 where I experienced multiple headaches per day. I later realized it was because oxygen only stops the headaches in the short term, primarily only pushing the headache back a few hours. When the headache returns, it always returned angrier and with friends. It took a couple months for me to cease all oxygen treatment. Once I did, my cycle returned to its usual "one per day" normalcy.

When that cycle finally ended, I found this forum and Batch's Vitamin D. The moment I started having shadows in April 2017, I started heavily dosing this regimen. Like I said, it knocked it out pretty definitively. The regimen stopped a cycle again in January 2018, and I have notes in my journal clearly indicating a major drop in headache intensity and duration. The cycle itself was mostly daily shadows that went away after about 4-5 weeks, but I had only maybe 3-4 headaches total during that entire time, all below kip 4 and all lasting less than an hour. Unbelievable!

Again, my routine at the start of a cycle is mainly to just start taking 20-30K vitamin D plus cofactors per day. I typically take 10K per day anyway, but usually 1-2 days per week either I forget to take it or I just want to give my body a rest from it. Since I live in West Palm Beach, I have the option of using the beach pretty much any day I want, so I do as often as I can when shadows hit. I make sure to get 30 minutes of sun in just my bathing suit and without sunscreen every day during these periods. If I get burning in random spots, to continue using the sun, I will sun screen those areas or cover them with a bit of cloth as I lay out.

Beyond this though, I don't do much else. No diet changes, no O2, no verapamil. I've never actually taken verapamil in my life believe it or not, despite nearly 23 years of this. I do know prednisone stops my cycles, but it's hardly what I would categorize as an effective treatment. The last time I used it, it stopped my cycle for two months before coming back in greater severity and length. That's how the neuro treated my July 2016 cycle. Some guy from Yale med school. I do have verapamil and prednisone in my medicine cabinet if I need it and I did take an EKG that showed it would be safe for me to take if I ever had to.

Also worth noting is that I have never had a blood test to test my vitamin D levels, calcium levels or anything else. I know I should. But I have not.

2019 is a big year for me. If I can knock this cycle down yet again with just the vitamin D regimen, and if I can make it to January 2020 cycle-free for the third straight year, then that's it for me. It's official. For me: Vitamin D prevents and controls my cluster headaches. I've been hesitant to say this for a while now as I wanted to accumulate more data for this post, but fingers crossed right now that I have good news to update come January. Obviously I'll be back regardless to update this. And if I get a full-blown cycle soon, I'll definitely be back to ask for advice.

Perhaps for the first time in my life, I'll have a long period of time (three+ years) to be able to reflect on the destruction this disease has caused across all aspects of my life. Getting these in childhood has damaged me in ways that are probably not too dissimilar to someone who experiences chronic child abuse as I suffer from both severe anger issues and severe emotional issues. Who knows though, maybe the clusters aren't responsible for those, but if I had to guess, they probably are, with some bad family stuff thrown in to make it that much worse.

It seems every time though I make some decent progress in moving forward with my life, the headaches come back and all progress is lost.

Here's hoping I can stay cluster free for another year so I keep working on myself and keep growing positively as a person.

Edit: Actually according to my journal, I have had a cycle lasting as short as 28 days when i was a kid because I have an old email somewhere where I wrote this to someone in like 2006 (back when I had no idea what these were yet). But even this information is spotty because I was still recalling a cycle length from the late-1990s.

Just wanted to add that to this post for accuracy's sake, even though I know this is anecdotal.

Second Edit: I also want to add that I currently have two frozen shoulders (adhesive capsulitis). Physical therapy makes it worse. I'm the real kind where it's caused by some sort of disease. I guess this would be a co morbidity. Left shoulder since June 2016. Right shoulder since December 2017. Left shoulder is mostly pain free and range-of-motion is very slowly returning (since about October 2018). Right shoulder however is still experiencing major pain symptoms, but the worst on that front is over. No range-of-motion has returned yet though.

Wanted to add this too just in case it was relevant to this or someone else out there. For this disease, nothing helps but rest, ice and time. That community sadly doesn't have a "Batch" to come up with a solution for everyone. And it's a very miserable, sad community too. And also similar to clusters, the doctors don't know jack. They're arguably dumber and more harmful when it comes to adhesive capsulitis, but it's pretty close to equal arrogance/stupidity levels. A real shame of a reality.

Just to add to what Batch has written, since I went ketogenic my lifelong back pain has disappeared (along with my clusters!  ). From everything I’ve read AND experienced, a LCHF diet (along with the avoidance of most vegetable oils) seriously reduces inflammation throughout the body, so it may well help with the shoulder. My other general aches and pains appear to have disappeared too, but that could be a case of confirmation bias! My partner has/had an autoimmune disease that responded well to Turmeric, but since we both went keto, it’s completely disappeared.

One last thing. If you go ketogenic then you may find that your resistance to sunburn increases. I’ve read countless personal accounts of this benefit. Not RCT’s of course, but I’ve seen and heard enough to think it may be true.

Best Wishes

Rightsider

Hi Constantine

I don’t want to hijack the thread/conversation, but I feel slightly compelled to raise a caution about fasting. First of all, I believe fasting is quite simply a fantastic thing to do. I’ve read many benefits from doing it and there are very few people who have anything bad to say about it within polarised world of diets. I totally get why Batch recommended it, it’s great for inflammation, and healing due its effect on growth hormone levels. However, whenever I have fasted (intermittent 16/8 breakfast skipping, not multi day) it caused me serious problems. I can only speak for myself on this, though I have heard one other account of a CH sufferer experiencing problems when skipping meals. After going around a week of 16/8, I start to get nocturnal attacks when drifting off to sleep. The problem starts slowly, then builds over weeks until I’m barely getting to sleep because of the attacks. My record was 17 oxygen aborts in one night. Took me a while to figure out what was going on because my daytime attacks were seriously reduced.

So, just a word of caution from me, simply because of my personal experience. I’m not claiming any wider knowledge on this.  It may be perfectly fine for you but be vigilant.

Regards

Rightsider

Hello,

I am returning after my most recent brief bout (in Dec. 2016) with clusters that I attribute killing the spell with the D3 Regimen.

I recently started up with a new cycle a few weeks ago.   I had been maintenance dosing for the last 2 years at just 5,000 IU D3 plus the 1,000 that my multivitamin provided.

I decided to arbitrarily bump up my dosage to 40,000 IU, and re-added Vitamin B50complex and Vitamin K2 into the mix at the recommended level.  After one week, I upped it to 50,000 IU.  I'm not at I think day 18 with the increased doses.

I did not get lab work done right away, so I don't know what my Vitamin D levels were when they came back.   I just got it checked today, and my Vitamin D level was 122.27, which after reading this thread, is actually seemingly very high.   It would seem that the logical thing to do is to go back down to a maintenance dose.

Long story short... I'm still getting blasted both mid-sleep (when I'm not afraid to fall asleep) as well as during the day.  Some days are better than others but no days are cluster free completely.   

It's also worth noting that the recent spell is accompanied by what we believe is a pinched nerve in my neck that we are also working on, but it's been giving my left back shoulder (the headache side,) and sometimes all the way down to my elbow, some pretty rough days itself.  Actually to be honest my shoulder is kicking my butt every day.  This started right around the same time as the clusters.

I'm starting a 3 day each 80/60/40/20/10 Prednisone taper today, because, frankly, I don't know what else to do, and I have missed a lot of work in the last two weeks.

Also, from a diet standpoint, I have not gone keto, but I have consciously reduced by intake of breads and cereals and have cut out any sweets/candy, etc.   Just drinking water throughout the day, and a morning coffee.

I'd just like to add my thanks to everyone who participates here and adds their own experiences.  It's very interesting, albeit unfortunate (because clusters suck,) to see all of the similarities as well as differences in our experiences.

And Batch, just a side note, when I started getting them again, one of the first things my wife said to me was "you should go read what that Batch guy said again." 

Many thanks Jon...

That was a great thread.  It amazes me how educated so many people here are on clusters and their potential root causes, etc.  It's a testament, unfortunately, to how bad these really are, and the seemingly general lack of attention they get in the medical community itself.


Since I started the ever-dreaded Prednisone taper today, I'm hoping that at least this time, it can serve a sort of dual purpose for both my clusters as well as potential pinched nerve that it seems I have in my neck, in conjunction with some therapy/traction that i'm using.  Currently I have issues with certain neck stretches cause pain/tingling into my left shoulder and elbow.

Many thanks Batch.  Since starting Prednisone yesterday afternoon I actually have not had an attack since yesterday afternoon, so that's actually a somewhat normal response for me during the short duration that I do run a Pred taper... the problem of course, as you mentioned, is what happens afterwards.

With the 122 ng/ml I have decided to run down my D3 intake to 20,000 IU / day (from the 50,000 IU I was taking, with no response,) plus whatever natural sun intake and an extra 1,000 from my multivitamin.

My current plan is to see how it goes with that and if I come off the taper pain free then move down to the 10,000 IU maintenance dose.

I'm also taking a morning and evening Benadryl now.  Thanks.

Hi all,
I’m looking for some advice along with a little reassurance about my current D3 regime. I did not do the loading dose but rather I started with 10k iu D3 & cofactors when my cycle began.  I was on that for 8 days before I could get to the Dr for my 25(OH)D. I wanted a baseline prior to loading. My results at 8 days were 25(OH)D 52.4, PTH 17, Calcium 9.7. I then increased my dose to 20k iu for the next 38 days. I will say at the 38 day mark this was the best cycle I have ever experienced in 27 years with CH as far as frequency & intensity.

I went back to the Dr on the 38th day to recheck my blood work. My 25(OH)D now 104, PTH 23, Calcium 9.8.  My Dr highly suggested I discontinue all D3 supplements as she said my level was “dangerously high”. This of course scared me so I brought my dose down to 10k that day, then 5k the next day, then zero vitamins the following day.  The night with zero vitamins my CH hit with vengeance. The next day I went back on 15k but it proceeded to be the worst CH week of this entire cycle.  I have now been taking 15k for the last 6 days and relief is finally back.

My question is, I only went one day without any D3 & my cycle ramped up immediately, is it possible my levels dropped that quickly?  Also, my blood work was 9 days ago when my 25(OH)D was 104, I don’t want to increase my 25(OH)D any higher but I also don’t want to be in pain so how do I know what maintenance dose to continue to take without increasing my D3? I am 5’2 114lbs if that matters.  I am not quite in remission but feeling like I am very close. 

I should also note that I have friends sending me articles about how dangerous high doses of D3 are for you.  I’m trying to not let it get in my head, but every day I take my D3 I’m wondering if my kidneys are gonna shut down lol. Any advice on how I should move forward is greatly appreciated.

Hi Patti,
Thanks so much for your reply.  I should have mentioned that I am taking Benadryl, 50 mg at night like Batch recommends but the HA are still breaking through.  Last night I was hit every hour,  frequency was high but intensity was low.  02 aborted everyone but they persistently returned.  I'm at the stage in my cycle were there is enormous pressure in the back of my skull every time my head hits the pillow.  Around 4am I finally just resorted to my recliner for the remainder of the night.  I have emailed a bit with Batch since my last cycle in 2017 when I first tried the D3, he has been so helpful.  I emailed him a week or so ago when I received my last blood work results but thought I would post here for some insight from others on the regime while I await his response.  I'm just about 7 weeks in so hoping this cycle is coming to an end soon.  I did not stay on the regime in 2017 when my cycle ended and I don't want to make that mistake again which is why I'm trying to find a healthy maintenance dose.  Thanks again for your advice & reassurance Patti!

Hey Batch,

Yes, your response answers all of my questions and then some.  I am now very clear on why my 25(OH)D is insignificant compared to my PTH and Calcium numbers.  One would think a Doctor would understand the important connection between all three rather then being an alarmist over just the elevated 25(OH)D.  None the less my anxiety is now eased & I will continue down this D3 path.

For anyone reading this that is considering the D3 Regime please note: I did not do the loading dose at the beginning nor am I taking Benadryl every 4 hours as suggested, I thought just taking it at night would do the trick. This is most likely why at 50 days into my cycle it's still all over the place.  Don't do I as I did but rather do as as Batch & the Regime suggest.  It will save you a lot of painful nights.

As always, thank you Batch!  The amount of time you take to help people with the D3 regime is truly commendable.

All the best, LAW