Hi Engles,
               Yes, I elevate the D3 when shadows appear, and that usually elevates me to around 240 nmol, I then drop back to 10,000iu after a weeks load up.  I'm due to get tested again, so it will be interesting to see where I have ended up, but past history when I did the same thing, I never ended up more than 240 nmol.
As far as the Benadryl goes, try chemist warehouse, they actually keep the "original type" behind the counter, so you have to ask. There starting to get real particular about selling it. So after I got that bottle, I went on line ( ebay)and ordered the 5o mg pills, from a U.S supplier, cost me about $18 all up, I wondered whether it would get stopped at customs, but it arrived in about a week.  I found by taking the Benadryl at night, 2 hours before bed, it really cleared my nose up and sent me off quickly to sleep. I found that I didn't have to take it thru the day. I used it for about 2-3 weeks, I haven't used it for about a week as it seemed to settle down, at the same time my cycle slowed down and basically finished.  as mentioned, my cycle, was basically 4-5 weeks of mainly shadows, and 1 or 2 kip 2 hits a day, which a red bull killed fairly quickly. So while I'm not totally pain free, my last few cycles have been nothing but a mild nuisance.  I've tried quite a few different extra things, as recommended by batch over the
journey, and slowly but surely, its improved each cycle.
I dropped the calcium last year, as I have a good dairy diet, and when I did, things got better for me. Other than that, the only annoyance with the regime is the " loosness effect "  LOL   I split the doses now, taking the fish oil and magnesium citrate in the morning and that seems to be make thing a bit better.
Its funny, but I can always feel something there, just a tingle or a twinge, waiting for that trigger to set it off, this last one was the abnormal hot weather we had in October, plus the high pollen count we have had, plus, my other trigger, staying up quite late at nights into the wee hours, watching the world cup rugby !!   So I was on a hiding to nothing for October !!!! 
I agree that if you try to many things at once, you wont know what has actually made things better,  Its a hard call when your going thru a bad cycle, but something I think is the best thing to do, try one thing at a time, a process of elimination, especially when you can play with the regime, in regards to titrating up on D3 and waiting for a reaction.
I've been off all other preventatives now since Febuary, when I was on verapamil, which did the opposite thing for me, in regards to everyone saying it was like a lead balloon, for me, both times I was on verapamil, for at least 6 months at a time, I couldn't keep weight on, losing probably 6-7 kilo's while I was on it.   So while I've been soley on the D3 regime, my only other abortive/ preventatives, has been red bull and imigran 50 mg tablets, which are hopeless for killing an attack, but when shadows appear in the wee hours, I take one before I go to bed and it gives me an un interrupted nights sleep every time, I only had to take them 2 or 3 times this cycle, so I don't need to do it on a regular basis. I haven't needed to use 02, for at least 18 months now.
If you need the contact address for that ebay seller for the benadryl, sing out and I'll email you the contact.
hope it continues to improve for you.

colin

Very interesting.  Thanks Batch and Blacklab.  And, Batch, I totally understand you're not a doctor.  I will be working with my GP on this, but appreciate your perspective nonetheless. 
I took 3 x 25mg Phenargan tablets over the course of 7 or so hours yesterday and slept through with no clusters or shadows.  Similarly, no clusters this morning, though the head was clogged.  So, that is very positive (TOUCH WOOD, is the beast listening?).  I did have a few palpitations yesterday evening and my heart rate was noticeably elevated.  This, together, with an uncharacteristic feeling of depression yesterday daytime suggests that i'd taken too much of the Phenargan ("negativism" is another side effect along with aforementioned heart issues).  I will just try taking one tablet before bed and see where that gets me.  I note that the half life of different H1 drugs is markedly different. Diphenhydramine is 2-9hrs whereas promethazine is 16-19hrs.  I'll speak with my doctor, but won't be dosing up like that in future.

Thanks again everyone for thoughts.  This feels like a really positive development [**TOUCH WOOD, TOUCH WOOD**].  I'll post another update shortly

Redskins player misses game due to Cluster Headaches.  Wish there was some way to let him know about this regimen.

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

I tweeted a link to this thread to both Knighton and his wife.

Here's another article about what he's going through:

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

I hope he and others with CH see the tweets and come here where they will find a welcome that only people with CH can give with advice that works.

Hi all

Just thought i'd post an update.  The phenergan (promethazine hydrochloride) appears to have worked as an adjunct to the D3 regimen.  I'm taking 1 x 25mg tablet just before bed.  Prior to supplementing with phenergan, the D3 regimen alone was insufficient to block my episodic cycle this year.  In fact, it was my worst cycle to date with 4-6 attacks per day.  However, a few days after getting on the phenergan, my attacks dropped to zero.  I'm still hugely allergic to something in the environment, but haven't had clusters for two weeks now.  Interestingly, my allergy is pretty severe this year and this may be linked to the severity of the underlying clusters.

I had a mini-binge of 8 little squares of white chocolate the other evening around 9pm (lulled into false sense of security) and developed low kip2 cluster at just past midnight, indicating i'm still in-cycle.  Given chocolate is vasoactive, this was probably a stupid idea.  Hey ho.

I need to find the source of my allergy though as i'm not keen to keep taking phenergan long term - back of pack it says not to take consecutively for more than 7-10 days and i'm on day 16 now! This raises the same question - what do cluster sufferers do when there's concomitant, long term allergy at play.  I will speak with my GP, but wonder if alternating between different first generation antihistamines would be less harmful. I'm also going to schedule a broad-spectrum allergy test to determine what i'm allergic to.  Beyond the first night when i clearly took too many phenergan (3 x 25mg doses over the course of a 12 or so hours = cue heart palpitations and strong, negativity), I've had no side effects though.

Thanks again, all, for magic support. I'll drop the phenergan in a day or two (after some industrial hoovering) to see if i can make it to the end of this cycle on d3 alone. 

Cheers all

Visperas It might have something to do with the time change just my 2 cents worth,

Mark.

Hi all,

Here's my (slightly more than) 1 month update. It is somewhat detailed, because I really want anyone who might benefit from my situation to have as many answers as possible to help them decide if it could help them, too.

Quick recap:

Been on the Batch D3 regimen since Sept. 26th, (the day I had a level 10 CH and had to go to Emergency at the hospital). I had taken my usual Zomig 5mg nasal spray, and a couple of extra strength Advils, but to no avail: even after 15-20mins, I was still suffering, albeit at about a level 8. At the hospital, they gave me a cocktail of pills which I probably took too late to be sure they aborted my CH. However, the Emerge doctor did also give me a prescription for the two main medications in the cocktail: Tramadol and Naproxin. Tramadol is a narcotic-like pain killer, but it's the Naproxin that will be coming back into this story shortly.

In addition, there were two other health issues I had been noticing. The first seemed pretty minor. For many years, probably around 20 years, I had slowly noticed that the frequency in my urge to urinate had been increasing to a point where I thought it was not normal. This urge had been waking me up in the middle of the night, often two or three times, but my doctor never really bothered to follow up with this, and since it didn't actually seem to be a real problem, I ignored it. I mention it because it will come again during the D3 regimen. The second and more worrisome health problem I had noticed was that back around the time I went from being an episodic CH sufferer to a chronic CH sufferer last August, I had also noticed that I would wake up with stiff and sore finger joints in my right hand. As I was primarily focused on dealing with my CHs, and I am loathe to jump to conclusions, I didn't see a doctor about the hand joint pain until this past August, when I was diagnosed with simple arthritis. I did note that the hand pain coincided with the transition to chronic CHs, and once again, this hand pain will come back into the story lower down!

Since starting Batch D3 regimen:

After starting the Batch regimen, and taking the D3 religiously, I went for about 3 days with no CHs. Then, by day 4, I was getting CHs, but much weaker ones. I was also supplementing with additional D3, but it didn't stop the CHs altogether. So, after reading again about COX-2 and how its production can be inhibited by NSAIDs like Advil, and also after reading Batch's recommendation for Benadryl to a CH sufferer who also was dealing with allergies, on Sept. 29th, I started to supplement my D3 regimen with 50mg Benadryl and 2x400mg Advil, just to see if it would work. The results were very encouraging. The Bendryl and Advil alone were able to halt CHs from manifesting as full headaches every time I took them together! I have no doub that the D3 was greatly weakening the CHs to begin with, but somehow, it just wasn't enough on its own. But with the D3, Bendryl and Advil together, I had finally found a combination that could actually stop the CHs, both from developing into a headache at onset, and as a preventative!

However, the effectiveness of the D3/Bendryl/Advil combination seemed to largely rest on taking the Advils every 4 hours, which is essentially the maximum dosage. So long as I took the Advils every 4-6 hours, I didn't even start to get a CH, but this seemed like an unsustainable regimen. Then I read up on alternatives to Advil, and one that jumped out was Vimovo. It jumped out at me because it is essentially Naproxen (the anti-inflammatory from the Emergency room doctor) plus esomeprazole magnesium, which counteracts the potential of the Naproxen to cause bleeding in the stomach. The nice thing about Vimovo over Advil is that it is a slow-release formulation. You can take only one or two pills a day, rather than every 4-6 hours. So I asked my doctor for a prescription for the Vimovo, and he gave it to me to try for a month.

Since starting the D3/Vimovo regimen:

While continuing the D3 regimen, I started taking Vimovo on Oct. 15th, at first at the prescribed 2 Vimovo (500/20mg) per day dosage, and then I dropped down to 1 per day, as I feel I should take the minimum dosage that works. The results are exceptional. For the first time since I became chronic in August of 2014, I have gone for over a month with no CHs, save for the following exceptions:

1) I got a level 5-6 CH on Oct. 23rd, probably because I had forgotten to take a Vimovo that day and the day before, and likely because I had my first cigarette in months. (If you suffer from CH, you MUST quit smoking. It is almost certainly one of the major sources of inflammation in your body!) I also got woken up from sleep by a level 4-5 CH that same night, and I took a loading dose of Vitamin D3 and 2 Vimovo. No CH again until Nov. 1st.

2) Nov. 1st, got woken up by a lvl 7 CH, this time it was probably the strenuous yoga I did earlier that day which really pulled on a muscle between my right shoulder blade and spine. Since the earliest days of my CHs, I had often wondered if there was a correlation between the CHs and a specific nerve or muscle in my right shoulder. Who knows, maybe when you pull a muscle, it causes your body to produce COX-2? Got woken up by a lvl 7 CH the very next night, too (Nov. 2nd), almost certainly due to the same pulled muscle.

After Nov. 2nd, no CHs. None. Natta!!!! By Nov. 15th, after having gone 13 full days without so much as a real twinge in the head, I decided to try to stop the Vimovo, and see if the D3 by itself could keep the CHs away. On Nov. 17th, two days after stopping the Vimovo, I had just a slight nervy feeling in that part of my head, but absolutely no pain. It was as if I WOULD have gotten a CH, but the inflammation in my body was low enough that it couldn't manifest itself as one. Same thing on Nov. 18th. Just a nervy feeling, but no CH.

On Nov. 19th, I had a follow-up with my Neurologist, and he said that, if the Vimovo and D3 work, keep taking them. I told him about my reservations over the Vimovo as a long-term medication (ie. potential for stomach bleeding/increased risk of cardiac events), but he said that, since I don't have any heart or stomach issues, I should weigh the relative benefits against the relative risks. My quality of life when getting CHs is in the toilet, and if the D3/Vimovo combination seems to completely eliminate CHs, I should stay on this regimen. He was so impressed with my experience on the Batch D3 regimen + Vimovo that he is putting another one of his patients on it, as they had to stop taking Verapamil.

Other benefits of D3/Vimovo:
There is another important benefit to taking the D3/Vimovo regimen. Since starting the D3 regimen back in September, I also noticed that frequent urge to urinate has dramatically subsided. It seems the D3 deficiency had other side effects for me besides CH! In addition, and this is especially noteworthy for me, the pain/stiffness in my right hand has disappeared because of the Vimovo! This is partly to be expected, as Naproxen is also used to treat arthritis, but it is fascinating to me that the very same thing that reduces the inflammation in my joints also reduces the inflammation which causes my CHs. In fact, while reducing my Vimovo intake experimentally, I'd bet that I will be able to use any joint pain in my right hand as a bellwether for whether my inflammation levels are high enough to be at risk for CHs again.

At this point, I am still on the D3 regimen, and taking one 500/20mg Vimovo per day, and I am sometimes skipping the Vimovo the occasional day.

So, mainly due to Batch's characterization of his D3 regimen as an 'anti-inflammatory' regimen, it is best to think of CHs not as headaches per se, but as a manifestation of too much inflammation in the bodies of CH sufferers. For some people, this inflammation might manifest as arthritis, for some it might manifest as CH.

Role of sleep in stopping CH:
One final thing I should also point out is the role of sleep in reducing my inflammation. I have known for years that staying up late greatly increased my chances of getting a CH, but for years, I have also suffered from insomnia because I was in a bad marriage which preoccupied me at night, and also, I simply had bad sleeping habits. Luckily, my new girlfriend gave me a Trazadone to try to help me sleep, and those things knock you out so incredibly effectively that I asked my GP for my own prescription. So in addition to the Batch D3 regimen and the Vimovo, I sometimes take a Trazadone to make me sleep early enough to get the full 8-9 hours. I have also been taking a 10mg melatonin supplement before bed in order to ensure a solid night's sleep since Oct. 10th, though generally, I don't take the Trazadone with the melatonin. I recommend the Nature's Bounty 10mg melatonin, rather than the piddly 1.5mg Webber Natural's Super Sleep, as a CH sufferer REALLY needs their sleep, and badly. 10mg will knock you out much more effectively than 1.5mg. In addition, the Webber Naturals melatonin also contains xylitol, an alcohol that actually triggers CHs! So sleep is an overarching, critical component to reducing inflammation, as your body repairs itself when you're asleep. By not getting a good night's sleep, you are increasing the amount of inflammation in your body.

I hope some or all of this information helps somebody. Please feel free to ask any questions or make any comments.

Best,
Greg

Thanks Peter for the kind words.

I realize I wrote a novel last post, so, just to summarize. I was an episodic CH sufferer since 2007. I went 'chronic' in August of 2014. I started the Batch D3 regimen on Sept. 26, but added Vimovo (slow-release Naproxin with esomeprazole magnesium) on Oct. 15th. I further augmented my routine with 10mg melatonin, and even the occasional trazadone (very effective sleeping pill) before bed (Oct. 10th) in order to regulate my sleep cycles (the 1.5mg melatonin  are not adequate). I have been entirely, utterly CH free since Nov. 2nd!

What I'm taking that seems to be keeping me CH-free:

1) A single Vitamin D3 10,000IU tablet each day around mid-day after eating lunch. I'm also occasionally (though not religiously) taking a 'For Men' multivitamin in the evening. Once every week or two, I double the dose to 20,000iu D3 for one day.

2) A single dose of Vimovo (500/20mg), always with the Vitamin D3. (I started with the prescribed two Vimovo's per day, but cut it down to one.)

3) A 10mg dose of melatonin before bed virtually every night, to ensure a deep, repairative sleep. I have also gotten a prescription for trazadone, a very effective sleeping pill, but I restrict the use of this to times when I feel I won't be able to go to sleep without something knocking me out. (I think this is a key part of what's working--getting consistent, deep sleep helps your body repair itself and reduce inflammation.)

Note: I keep the Benadryl handy, just in case I have to deal with a histamine response. So far since I’ve started the D3/Vimovo together, I have not needed any Benadryl.

Evidence this is working:

1) For the first time since August of 2014, I have gone for more than 5 days without a single, solitary CH. In fact, now been 21 days! Utterly CH-free! My last CH was on Nov. 2nd.

2) I can even drink ALCOHOL! I tried my first sips of booze (some strawberry beer) in late October without getting a CH! I also had a couple of sips of beer last night at my in-laws, as my sister-in-law works for a craft brewery, and once again, not the slightest whiff of a CH!

A quick note about a new CH trigger:

As I mentioned in an Oct. 5th post (after starting the D3 regimen, but before starting the melatonin/Vimovo on Oct. 15th), assembling some new Ikea furniture seemed to give me a CH the last two times I did it. My theory is that the IKEA particleboard contains significant amounts of Acetaldehyde (which is the same substance your body produces in your liver that triggers CHs, too! The excess acetaldehyde off gasses and dissipates once you’ve pulled the boards out of the packaging, so you can have it in your living space, but it might very well trigger a CH in some people when it’s first being put together.) I looked into this further, and there are indeed significant amounts of acetaldehyde in new particle board, so, you visit IKEA/assemble new IKEA furniture at your CH peril!

Keep well and ask me any questions!