Please excuse my ignorance...a lot of these measurements and such have me very confused.  I should also say I don't have insurance and can't afford to do any of the follow up tests everyone is speaking of. 

What I have to say is this;  THANK YOU To "Batch"! 

I'm 36 years old and have had Clusters since about 21.  For the first few years, no doctor would diagnose me with them even though they were super classic Clusters.  I would only get them while I slept-typically 2-3 hours after I would fall asleep.  I would wake up with a full blown CH.  The pain so terrible that I would grind my head on anything hard and cool that I could find.  My episodes would ALWAYS start with a drastic change in weather-Since I  live in Michigan, that made things hard to predict.  I  always had the faucet-like nose on only which side the CH was happening on, They lasted 3-8 weeks, only while I slept and always only one side of my head (behind the eye).  After seeing many doctors I finally found one that talked to me for 5 minutes and said "You have Cluster Headaches".  I was so happy for someone to recognize that there WAS a name for what I was experiencing! I eventually saw a neurologist that prescribed me Verapamil & Prednisone.  I was so happy that that combination did bring my episode to a halt.  I didn't love the weight gain or the long term effects of either of those medications-but it worked. 

I had about 3 years with with no attacks.  But they of course came back and have gotten stranger.  I have been suffering from this current episode for longer than ever and they've been more frequent.  I completed 12 weeks on my right side.  Extremely intense, much more frequent (not just at night anymore) about 4+ per day. Randomly they stopped for 2 weeks and then started again on the opposite side Whenever they switch sides, it's supper depressing because they always stay for equal times-which means 12 more weeks.  Now the nasal drama is present, but not faucet like but in the last few years my eyelid on the CH side would completely swell shut.  The pain of all this is more than anyone should bare, but the anxiety, stress and depression is almost as bad.  When I only got them in the middle of my sleep, I would try my hardest to stay awake ignorantly trying to avoid them.  As a single mom  and someone who has always worked a minimum of 6 days a week...all of this really took a toll.  Those of us without insurance know how much any migraine medication that even has a slight chance of helping can cost. 

This past Friday I decided to go back online and search for help.  CH's hurt my mental health, family life, job and basically any relationship or aspect of my life.  At this point I'm 2 weeks into my left side switch.  On Saturday I purchased all the vitamins suggest and took all of them.  There was so much info and technical measurements and such that I really wasn't sure if I was supposed to take them all or start with some....but I figured they're vitamins, not illegal drugs and at this point, I had nothing to lose.  This is what I started taking, all at once-4 days ago:

10,000 IU of D3
630mg Calcium Citrate W/500IU of D3
400mg of Magnesium
1200mg of Fish Oil w/360mg of Omega-3
One a Day Womens 50+ which provide me with the needed:
3500IU of Vitamin A
20mcg on Vitamin K
24mg of Zinc
And additional Vitamins not suggested in the "Batch"
regimen.

I went with the One a Day Womens 50+ even though I'm only 36 because it had a larger dose of Vitamin A and a few other key nutrients.

I don't know if it's God, a coincidence or just "Batch" but my Clusters haven't been less painful or less frequent...

They've been non-existent. 4 days CH free and tonight will make 4 nights.

Is this really possible?  I don't want to get my hopes up but how can I not?

Thank God!  Thank Batch!  Thank God for creating Batch!   

Dear friends of Clusterville:

I am episodic CH (first right side, and later also left side, both independent from each other), 34 years old, diagnosed at my 28, the first attack I remember was when I was 24, and I am almost sure I had attacks at least since I was 20.

In October 2012 I got the worst episode I ever had, and then I found this great site, where I found the advices of our friend Batch and the Anti-Inflammatory regimen.

I got the vitamins as soon as I could from Internet (I live in Chile, where you find no more than 400 IU of VitD3 OTC), and in no more than three days after taking VitD3 and some of its cofactors I got a relief from my episode, and a few days later the beast had gone away.

Since then, no more than one episode a year, with just mild headaches, aborted with O2 (anyway I keep renting my cylinder of O2 at home).

I filled the survey after 30 days in the regimen, and I was sure I wrote a message in the other thread of this forum (123 days PF and I think I know why) telling my experience many months later, but I am unable to find it now. Perhaps it got deleted by some reason...

And everything went fine until four weeks ago, when I got ChickenPox (yes, at my 34).

A summary:

• June 17: I got a strong shadow on left side.
• Between June 18 and June 29, some shadows and two mild night attacks (left side).
• June 28: Got loading dose of 50,000 IU of VitD3. Daily intake of 20,000 IU of VitD3 after that.
• June 30: Diagnosed with ChickenPox.
• Between July 1 and July 10, PF days and nights, just recovering from ChickenPox.
• Taking Aciclovir (antiviral) and Desloratadine (antihistamine).
• Then... July 10, and the beast stroke back from the right side, always at night (1 hour after getting asleep), with the worst episode since October 2012.
• Since July 10, got hit each and every night (exception in one night only), with headaches between Kip 6 to Kip 8.
• O2 as abortive after 5 minutes, when not effective, repeated after some minutes, then always effective.
• Headaches return after 60 to 120 minutes, only gone away to the next night after taking Eletriptan or Naratriptan.
• As of now, still with night attacks.

I made some lab test for 25(OH) after getting hit again:

• June 27: 102.4 ng/mL
• July 17: 114 ng/mL

These are the daily components of my regimen:

• VitD3: 20,000 IU
• Magnesium (citrate/oxide): 500 mg
• Omega3: 360 mg EPA; 240 mg DHA
• VitK2: 90 mcg menaquinone-7.

Dropped (all of them in one pill):

• Calcium (carbonate): 1,000 mg
• Magnesium (oxide): 400 mg
• Zinc (oxide): 15 mg

I dropped the Calcium, following an advice from Batch given to another Clusterer many weeks ago. I hope I got it well understood.

I am trying to alkalinize my diet, since two days ago, still with no avail.

Batch, could you give me some advice, anything you think I am doing wrong or missing. I am almost sure the ChickenPox is the one to blame for this new episode, despite the high levels of 25(OH).

I want to say a big Thanks to all of you, who have built a tremendous community of people, whose help gets far far away, even here in South America. It is terrible not knowing a clear cause for this condition, but having the Anti-Inflammatory regimen has been a huge relief for me, and for so many others.

Every MD I see (neuro or from other fields), I talk to him/her about the regimen. Some of them say they consider it interesting, others just ignore it. Fortunately, the neuro I see is specialist in Multiple Sclerosis, that also has a overdose of VitD3 as some of its new treatments, so when I told her about our regimen, she gave me all the support I needed.

Batch, thanks again, and I hope you have something to tell me about this new episode.

Hi all, a little update on my experience with D3 so far.

My cycle started on June 5th and built up over a few days to where I was getting hit 3-4 times a night, about an hour after going to bed, then every couple/few hours through the night, with some hits also coming between 7-10:00 p.m.. The worst attacks came about 7-10 days later with hits in the KIP8,9,10 range. It wasn't until 6/17 that I finally got in to the doc for some Rx relief (O2, Verapamil, Sumatriptan nasals). The O2 was the biggest relief, Verap I'm not sure about since it was only 240 mg 1x / day, and the Sumatriptan I've only used once... mainly rely on O2.

So I decided to give the D3 regimen a go. Started it on Fri. June 26th. That Saturday was the first night of uninterrupted sleep I had in almost three weeks. I was stoked... WOW, this is really working. Well, that was just one PF night. Sunday we drove 6 hrs. to the U.P. of Michigan and that evening I had a beer... the first in over a week... well 6:00 p.m. I felt it coming on... only a KIP 2-3, and it was aborted in less than 5 mins. with O2. I got hit two more times that night after going to bed but again they were only KIP 2-3's and aborted in less than 5 minutes with O2. Monday and Tuesday were PFDN's, Wednesday night I had 1 cocktail and got hit twice during the night, but again only KIP 2-3's easily aborted. Thursday and Friday were PF, Saturday being 4th of July I thought I'd try the beer test again and remained PF. Sunday, a couple beers and a couple cocktails around the campfire and still PF. Monday, Tuesday, Wednesday PF, except some light shadows. Wednesday night got home, had a few cocktails after the long drive and got attacked twice that night, but still only in the KIP 2-4 range. Thursday and Friday were again PFDN's. Saturday night got hit a little harder, KIP5 or 6. Now I've only been getting hit once a night, usually between 9-11 p.m., and only KIP 2-4, easily aborted in less than 5 minutes. Last Tuesday was a weird one... 10:30 felt it coming so started the O2. It was only a KIP 2-3 but after 10-15 mins. on the O2 it was still hangin' on so I slammed a 16 oz. Java Monster and another 7 or 8 mins. on O2 finally aborted it. Last night was the first time in a week and a half that I got attacked after going to bed, 1:45 a.m..

So that's my story and I'm stickin' to it. Sorry it was the loooong version.

So my thoughts are that the regimen definitely is helping... reducing the frequency, intensity and duration of my CH.
THANK YOU BATCH!!!
My problem is I like beer... and my evening cocktails... and I think the alcohol has probably interfered with my livers ability to properly process the vitamins. At least that's my theory. And that's why I'm giving up the alcohol again, at least for a while.
I also know it's been talked about taking Benadryl to alleviate possible underlying allergies but I'm reluctant to take it because I think it may irritate my urinary tract.

Well this has gotten long winded and it's getting late.

I'm thinking I will have to order one of the D3 blood spot test kits and in a few weeks will provide another update and take the survey, if that's still available.

Thanks everyone, and thanks again Batch. 

   

Nicolas; You don't seem to mention vit a in your regimen. Have you missed that one? My clusters return whenever i stop taking vit a.

Hi Friends,

Morran:
Since my last post (July 21st), I added a multivitamin formula, with VitA, B Complex, and many others (I attach a picture of its components).

I take two of these pills a day, so I'm getting 5,000 IU Vitamin A. Also, I keep the VitD3 treatment with 20,000 IU daily, along with 500 mg Mg, 2x Omega3 (360 mg EPA; 240 mg DHA), VitK2: 90 mcg menaquinone-7.

Peter and Batch:
I didn't find Dyfenhydramine at any drugstore, so I am taking two pills of Chlorpheniramine a day. I should wait for no less than two weeks to get the pills from eBay, and I risk them to get caught at the customs office here in Chile.

On July 25th I visited a new Neurologist, who received well the VitD treatment, and also agreed with the suspicion about a VitB12 and VitB6 deficiency. She prescribed me 3 injections of "Neurobionta Duo 10,000":

• VitB1: 100 mg
• VitB6: 100 mg
• VitB12: 10,000 mcg

tonight I got the third injection. She also agreed with ChickenPox as the likely culprit of this new and empowered cycle.

So, what is my current status: not much better than a week ago, I still get hit every night, from 2 to 5 attacks:

• After the first injection (July 26th) I got my first attack 6 hours after getting asleep (in these 20 days of constant attacks the better I've gotten was the only PFN and an attack 3 hours after getting asleep; the average is 1:30 after sleep, repeating all night at almost the same pace).
• The last two nights I've been able to kill the attack with just 5 minutes of O2, and sometimes with hot towels applied directly to mi right temple.

The same neurologist last saturday prescribed me Prednisone (20 mg, twice a day for a whole week) and Topamax (Topiramate, 25 mg, every night for a month). This is a treatment I have been eluding since I got diagnosed with CH, so I am waiting until this saturday for the treatment with VitD, VitsB, VitA and 1st generation Antihistamine to stop the attacks. She was worried that I was more than two weeks without good sleep, so she expects this treatment to kill the cycle.

I am afraid of the side effects of Prednisone + Topiramate, that's why I am waiting a whole week in order to see if this cycle stops.

Anyway, today I bought the Vitamin B50, and I will take it since tomorrow (today I had my third injection of Neurobionta Duo 10,000).

I will tell you how I get these two nights before saturday and the Pred+Topamax combo.

CHaStever wrote on Jul 21^st, 2015 at 2:16am:



I am on the Batch treatment and I like my beer too. Alcohol metabolizes to acetylaldahyde in the liver. Acetylaldehyde is a histamine and there has been a lot of evidence lately that histamines are a trigger for CH and blocking them can help.

I actually can drink beer now while in cycle. here is what I do. When I drink I take two dyphenhydramines, two magnesiums and two L-cysteines. I also take them before I go to bed. We have a member here that swears L-cysteine has stopped his CHs. L-cysteine does not seem to do anything for me, unless I am drinking. What it does is block acetylaldehyde production in the liver. Without the acetylaldehyde there is no histamine reaction.

This may not work for you, but it could be worth a shot. It doesnt work for me unless everything else is right. I will be starting another thread about multivitamins after this because I just went through one not working for me.

Cheers!

Annualheadcase, please consider trying oxygen - it helped my husband cope before the supplements kicked in!

I just started Batch's D3 Regimen yesterday, and I've gone from 3-4 CH/day to one very minor one this morning that was easily quelled with a Zomig 5mg, so an auspicious beginning!

A bit of background. I'm a 46 year old man, and have been getting CHs since 2007. My CHs have been episodic rather than chronic, until about August of 2014. From October 2014 until August of this year, my CHs have, for the most-part been largely controllable with verapamil and Zomig. However, since August of this year, I've been finding the verapamil dosage of 6x120mg (2 in the morning, 2 at mid-day, 2 in the evening) to be robbing me of my vitality in every way. It makes me insanely tired, and unable to engage in any meaningful exercise, so I stopped taking it. Without fail, I started getting CH every day, and sometimes 3 in a day, since early September. In the last week, I started getting 3-4 in a day, so I resumed the verapamil, but yesterday, something happened that was the straw that broke the camel's back.

I was at the hospital yesterday afternoon after getting a force 10 (I was already using a 1-10 scale for my headaches before I ever heard about the other guy's 1-10 scale!) CH at around noon yesterday. Not only was it the worst CH I'd had in while, I had had another force 10 CH only 3 weeks ago, and that made me concerned, as force 10 CHs have always been quite rare for me (up to 8 or 9, yes, but not 10). The last straw for me was that a 5mg Zomig nasal spray, 2 verapamils, 2 extra strength advils and a lithium carbonate, all taken at the very start of this headache, did absolutely NOTHING whatsoever to mitigate it. The force 10 pain lasted about an hour solid, and the only relief of any meager sort I could get was running hot water from the bathtub tap over the right side of my head while holding my hand to channel the hot water over my eye socket area. But the even scarier thing for me was, this headache did not entirely disappear, even after the hour, though it dissipated down to a force 2-3, enough for me to be able to have my girlfriend drive me to the hospital. I decided that I would ask the doctor in the Emerge for a prescription for anything he would give me to put a dent in that kind of pain, since I didn't think I could endure it again.

At the hospital, while on a cocktail of narcotics waiting to see the doctor, I cracked open my laptop and scanned the threads on this site again; though I had joined a couple of weeks ago, I had not seen any mention of Batch's regimen. Well, yesterday, I finally did, and amazingly enough, my girlfriend happened to have enough Vitamin D3 with K2 capsules, and the other ingredients at home, for me to start the formula. So, at the hospital, I did ask the doctor if he could take some blood for the serum 25(OH)D level baseline before I started the regimen, but he said he's never ordered that test before, and that I'd have to ask my family doctor or neurologist to order that.

I didn't want to wait to start the regimen, after just having had a force 10 headache, so I just started last night by taking the 50,000UIs of D3, along with the Kirkland multivitamin and Magnesium. I had to take 50 capsules of D3+K2! But I did it. I'm now on my way out the door to go get a more manageable D3 dosage product, but one obstacle I'm already running into is that in Canada, Health Canada has ordered all Vitamin D3 in dosages over 1000UI off the shelves, so I probably can't get any 5000 or 10000UI D3 from a store here however, it looks like I can order it through Amazon.ca, so all is not lost. If worst comes to worst, I'll drive down to the US and buy some over the border on a day trip. It's only about an hour or so to Ogdensburg, NY from Ottawa where I live, so I'll look into doing that.

I'll just have to get the level tested asap and see what it is. Assuming my serum 25(OH)D was low to begin with, it probably won't be that much higher after only a few days of the regimen, so I'll report whatever it's at when I do the test. I'll provide updates as time passes.

A lot of people order vitamin D3 online, with iherb.com being one that a lot of people have posted as having used with no issues. This is probably cheaper than driving to the US to get them, unless you are going for something else too.

In general most people with CH find that going to the ER (casualty / A&E) is just about useless for complex headaches as the doctors there are clueless on dealing with things like CH (much better with something like a broken leg, heart attack, etc.). So most people avoid them.

I hope that D3 works as well for you as it does for me, I'm one of those who have been CH pain free using it for multiple years.

Batch wrote on Sep 28^th, 2015 at 6:54pm:


Thank you very much, Batch.

Just an update. I'm on day 4 of the regimen, but I've already been very pro-active. Yesterday, I had a blood test to check my 25(OH)D level (that was before my 3rd dose), and today, I picked up a prescription from my neurologist for 10,000IU dosage D3. Apparently, it does exist in Canada, it's just prescription-only. The great part about this is that my medical insurance covers the cost, so I only pay for the dispensing fee of $3.99 at Costco. He only gave me a prescription for 30 of these as a trial, but it beats having to take tons of 1,000IU capsules.

On a more sour note, unfortunately, just today, I had not one, but two pretty bad CHs (first one at about 11am at work-lasted nearly an hour-about a 8 in strength) and the second one, only 1/2 hour after taking my fourth dose of Batch regimen after dinner tonight. This CH was slightly worse, about a 8-9. I took a 5mg Zomig nasal and 1x240mg verapamil for the first CH, and another 5mg Zomig nasal and 2x240mg verapamil for the second. However, I also read on this thread about histamine responses negating the effects of the Batch regimen, so I had my brother go out and get me some benadryl. I just took 2, and we'll see how well this works.

Although getting two CHs on day 4 of the regimen was disheartening to say the least, I am so convinced by the anecdotal and scientific evidence of the efficacy of the regimen that I am going to stay on it, and give it a trial of at least a few months, as I really don't like verapamil, and verapamil didn't even seem to stop the force 10 CH I had last Saturday at noon at all. Based on what I've read on this thread, I think it's quite probable that my latest CH cycle is due to some sort of histamine response to something. I have been sneezing intermittently for a few weeks, which is about as long as my latest cycle has lasted. In addition, I remember that the first CH cycle I believe I ever had, back when I was about 20, seemed to be brought on by delivering the university newspaper. I had terrible headaches for about two or three weeks, and then mysteriously, they stopped. I remember my mum saying it might be the ink on the newspapers, as I had 5,000 papers stacked in the back of my VW Rabbit every Saturday on the drive from the printers to the university, and she said that newsprint ink always made her sick, too. But the mystery of why my headaches stopped was solved when I asked the guy at the newspaper printer about the ink, and he said that they had just switched over to vegetable-based inks around the time my headaches stopped!

Anyhow, I only mention this in case it helps anybody else with their CHs. Unfortunately for me, I work around ink at my current job, and just before the 11am CH today, I went down to help a guy who works on a large ink-jet transport that has about 18 inkjet heads that print labels all day long. Hmmm.... We'll see if the Benadryl helps me, along with the Batch regimen. I've also decided to boost my D3 intake to 50,000IU for the next couple of days, and breaking them up into 20,000 morning and 30,000 dinner-time, along with the rest of the cocktail at that time. I'll keep you all posted.