Help guys!  I've completed 10 days of the D3 regimen (the full thing-D3, fish oil, calcium, magnesium, boron, K, etc.), including accelerated D3 dosing of 20k/day plus 50k loading doses 2 of those days.   Things have went from bad to much worse!  (for the record, my 25(OH)D was 42 on day 3 of the regimen).

When I started I was having 2-3 attacks a day, and that went up to 4 - 6 attacks / day a few days in (which I hear is not unexpected for there to be a slight uptick early on), but now I've had 8 attacks/day 2 days ago and 11 these past 24 hours.  I could tolerate the slight update to 4-6 attacks / day but I cannot keep doing these 11 attack days.  Thoughts on if this could be a result of the D3 regimen?  I've added the lemonade, you name it - I'm following the program.  Last night's 9 nocturnal hits was after taking DHE IM, which normally would get me 24 hours of peace.  I cannot do many more of these high-hit nights, I'm at wit's end.  Not sure how I'm going to be able to keep doing my job either, right now, I'm so exhausted.

Suggestions would be greatly appreciated.  Thanks.

Matt

Matt

Feeling your pain and hoping Batch will chime in today with some ideas. It took me awhile before the D3 worked. Every increase in dose seemed to work for a day or two and then my hits increased. I think the Beast knew his days were numbered.

Hang in there!
Judy

Totally agree with Judy...
Matt, if you see this post, perhaps list exactly what you are taking for Batch to comment clearly.
For the first 3 weeks of starting the Regimen, I experienced break-thru's on my left side, which I hadn't suffered for many years with.  Strange... then they stopped, so far I have been pf since October.
I'm episodic
All the best Matt.. stay tuned,  pfw's my friend.
Sue

Matt,

Thank you for the update and I'm sorry you're having such a rough time. 

There have been a few CH'ers who reported experiencing an up-tic in the frequency of their CH for a few days after starting this regimen... but when they elevated their 25(OH)D into the green zone, (60 to 110 ng/mL), the frequency of their CH dropped and most experienced a pain free response.  Your case is clearly out of the norm for this regimen.

We've a saying in aviation that "When you screw something up (a euphemism for the F-bomb) flying a jet, and the jet does something that scares the crap out of you...  Unscrew it!"

In your case, you haven't screwed anything up... but at this point, you need to stop the entire regimen for a few days to a week and see what happens to your CH pattern.

There are a lot of moving parts to the anti-inflammatory regimen and they're all interrelated...  One or more of the supplements may be causing the increase in the frequency and severity of your CH...

If the frequency of your CH drops after being off this regimen for a few days... and you feel up to it...  add the supplements back one at a time with 3 to 4 days between each supplement.  Start with the vitamin D3 at 10,000 IU/day followed by magnesium...

In the mean time, PM me with the brand and strength of the supplements you're taking.

Be sure to discuss all this with your neurologist to keep him in the loop. There's always the possibility the increase in the frequency of your CH may be due to one or more of your prescribed CH medications.

Again, sorry you're having such a rough time...

Take care,

V/R, Batch

when I started the regime, it was a few weeks into the cycle.  it didn't make any changes at all, in fact I thought it was making it worse.
I wish I started the regime out of cycle, and have all the levels up in time for the next cycle .
I too was hoping it to be the miracle fix,  but until I got my levels up to 200 nmol, which took at least a couple of months, it didn't really have an effect for me.
now, im feeling the impact of being in the green zone with vit d3, as I tip toe thru what was last years mega time period for a cycle    shhhh
so please don't give up on it, some take longer to work,  and it wasn't oxygen or an imigran shot type quick fix, its a slow build up,,  its just we don't start trying it till we are desperate or about to start or when its started.
hope it all works out for you,   stick at it don't give up, you could be like me,  just takes a little longer than others have taken

colin

Just an update - after exchanging emails with Batch I opted to keep on the regimen but eliminate the calcium, with the thought being that it was making my verapamil less effective.  Yesterday I only had 1 CH and today only 2 minor CH so far (but I slept through the night last night!!!).  One of the 2 today was on the train so I had no O2 but it never got above a KIP 3 even without O2. 

At this point I am cautiously optimistic.  I'll keep everyone posted.  Thanks to all who posted encouraging words!

Fingers and toes crossed for ya! Just having one night PF is huge when you are in the midst of a cycle! Keep us posted please and keep in touch with Batch!

Judy

Hi Matt, I am in a very similar situation. I am convinced that in my case Verapamil is the "antagonist" in the scheme.

I am in the VitD green zone but since arriving there every intake of Verapamil has resulted in an aggravation of my CH, exactly 1 hour after taking it, giving me near continuous hits (12-14) a day, similar to you.

Consequently, I decided to taper off Verapamil to give VitD a chance to work. Regrettably, after some 80 hits last week I am first having to deal with a run of rebound headaches from Imitrex and Zomig.

The rebound is blurring the true picture of whether the VitD is now covering my bases or not but once I am out of the rebound cycle I will know if it will carry it with out Verapamil.

I am not suggesting to go off Verapamil or anything else but to stay close to Batch, who is giving me great support behind the scenes. At the same time, it is now evident that in my specific case the Regimen and Verapamil do not agree with each other. This may be worth exploring for other people with whom the regimen doesn't work.....as yet.

I am hell bent on getting this to work. Am regrouping and giving it another shot once I can think straight again.

Hope you will be PF soon.

hey chmatt,  seems as though you may have hit a balance.
    I to had all sorts of funny things happen.  but as mentioned, my cycle last may/june, went on forever, I believe it finally stopped around October,  considering before for a couple of years they were irregular and never went for more than 3 weeks.  I started the regime when the cycle had started, for me, the regime was slow acting.
I was on 270mg of verapamil pryor to the cyle starting for a good 4 months. this lessened the strength of the attacks in may from kip 10, to on average kip 6-7. I still gave in and took a weeks course of prednisone, then resumed verapamil and the regime. I didn't think anything was going to work for me.
since October ( the cycle ending ) ive tinkered with the amounts of all the supplements, I was getting night hits, 3 or 4 a night, and obviously you panic when it wakes you up and have trouble going back to sleep afterwards through fear of it returning. all my night hits only got to a kip 1-2, and were easily aborted, by a red bull, then ice cold water. I lifted my fish oil to two pills ( 3000mg) for 2 or 3 weeks and the night hits stopped, so I returned back to the one now.
the moral of my story, was that the regime didn't instantly work for me, but once out of cycle ( October ) ive had no real cluster hit apart from the occasional night ones explained.   I can also feel them sometimes wanting to break thru, I will heat up just the same as when I was in a full blown cycle attack, but it doesn't go any further !
ive dropped down to 180 mg verapamil at the moment and been relatively pain free for going onto my 4th month, while treading carefully, and January is normally my danger time,  thru actively changing up the amounts of supplements when something doesn't feel right, using the diet that batch put up, the ph drink,  im starting to believe that im seeing the light at the end of the tunnel.
its a long road ahead, but there is light, a lot have had some great success on the regime and I hope you stick at it, get out of the current cycle your in and then do as I did, with input from batch and reading others experiences on it here, hopefully you'll find that sweat spot im endeavouring to be in.   wish it would react the same for everyone, but we're all different, just gotta   " find that sweat spot "
sorry about the long winded post, just wanted to relay my past difficulties..........
   
kindest regards
colin 

I eliminated the calcium from the regimen and within 2 days was having drastically less hits.  Within 4 I had a few small hits and some shadows, and then....the glorious PF day and night!  Several days later I wondered if the D3 had kicked in enough that calcium wouldn't fight with my verapamil so I added the calcium back but timed it better relative to when I was taking my verapamil - big mistake!  Four hours later I started 36 hours of hell! 

So I dropped the calcium again and have just completed 24 hours PF.  I'm now certain that my verapamil is made ineffective by the calcium supplements.  My thought process at the time is that since the calcium is known to make verapamil less effective, I still need to stay on verapamil with the D3 regimen for the time being.  I'm ok with that - I've been chronic for 24 years and that whole time on several Rx concurrently to control the headaches that whole time.

A few weeks down the road I'll start tapering my cyproheptadine and Elavil (separately, not concurrently).   Keeping my fingers crossed...

I had my 25(OH)D3 tested and it was at 102, so as of tomorrow I plan to drop down to 15k a day of D3 for a
week or two and no more loading doses.  After a couple weeks of that I'll get the 25(OH)D3 tested again to see where I'm at.

Things are looking up.  I'll keep everyone posted.  Thanks for everyone's help and encouragement!

Good work in figuring out what you need to do to fit in with your medication and how your CHs affect you.

It isn't surprising that there can be an interaction between verapamil which is a calcium channel blocker (antagonist) and taking calcium supplements. Many can just make sure that they take the calcium multiple hours after or before taking the verapamil, but you've found that this doesn't work for you.

For tapering the other medication, waiting several weeks is a good idea, as is tapering off just one at once as it enables you more easily to link what you're changing with what the impact is. It is far too easy to change multiple things at once (I know I've done it) to find that you just don't know what changed what.

Once you're hopefully down to just verapamil and the D3 stuff you may be able to make more changes in the verapamil, but if you need both to control your CH then the important thing is that it is being controlled.

that's great news chmatt,
I too dropped down to only 1- 200 mg calcium and have dropped it completely at times to find an improvement.
ive played with the fish oil and the magnesium when shadows appear.  I too have been shadowing a bit in the last two weeks, with a wake up one at 3.00 am last nite, but an ice cold water and 15 min later it went, it was about a kip1-2.  compared to what I used to suffer and this is my danger time, I believe its wanting to rear its head, but the regime and verapamil are holding it off.  I will drop my calcium tonight for a week and see if that gets rid of my shadows.
last nite, while having a barbecue with friends,  first nite out in a week as weve been having horrible temperatures, it didn't go under 41 celcius for 4 days, peaking at around 44 deg C and about 29 at night,  I had my first beer in about 13 years !!  got no immediate ch hit, just the early hours of the morning shadow as prev described.  was super scared to even try one as I didn't have any med's with me lol
the upshot is, it was nice to have, but I can honestly say I've lost the taste for it now !
all those years of not having because of the instant headache i'de have,  ( b4 I was even diagnosed with ch )
  I was expecting to enjoy it a whole lot more than I actually did  LOL    and I used to LOVE my beer !
anyways, here's hoping you continue to find that sweet spot matt,
regards
colin

They headaches came back for a while while I was fighting off a cold.  I had my 25(OH)D checked by my PCP and it had dropped from 103 to 77 during that time, even though I was still taking weekly loading doses and 20k/day.  Last night and the previous night I had shadows at exactly 8:50 pm, but they never got worse than a very tolerable KIP 2-ish - I opted to continue watching TV and not run to the O2 and they never got worse than that and were on their way after 50 minutes.

However, more importantly, I slept through the night the last TWO nights!  Very happy about that!!!  :)

Colin - I'm in the same boat as you - since I'm chronic it's been probably 15 years since my last beer and I am eager to try one again.  I'm being a bit more cautious - I'll wait to try one until I'm totally shadow-free for a few weeks.  Who knows, I may have lost my taste for it too, but it'll be nice to have the option if it works for me.

great news that you could be getting closer chmatt
im experiencing a return as such of the beast, as per my other post.  but deep down I know that the vit regime has changed the beast.  im episodic, which while I couldn't imagine what it would be like being chronic, but I guess it might be easier in some ways to see changes if you know what I mean. since im a relative newbie, my clusters never really showed any regular patterns, so its hard for me to pin point a definite pain free time.  this time last year was 3 weeks of 4-5 times a day of kip 10's  the first full on cycle.  wow, I still cringe thinking about it.
but, I know the regime is doing something, just got to fine tune it.  and the proof of taking 15,000 vit d for 4 months and sitting in the green zone with my calcium score in the normal zone sais heaps for batches regime and the safety of it.
I think Ive seriously given the beers away !
that's a hard statement to make, but, I couldn't bring myself to enjoy it   lol
good luck with it anyway chmatt,  hope you keep improving

colin