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SECAuthentics

Question about D3 + other

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Posted (edited)

I first discovered Batch's D3 regimen on this site 4 years ago, back in July 2016. Eager to try anything I began the protocol and after 3-4 weeks with no relief in sight I was beginning to doubt if this treatment would work for me. I remember sometime after the 3rd or 4th week, the headaches stopped and I was in remission for 4 years (still taking the recommended daily doses every single day) I remember I had just (finally) gotten my oxygen prescription filled/delivered like a week before my last headache...only used these new oxygen tanks that I had to move mountains for 2 maybe 3 times. They've sat in the corner of my bedroom for the last 4 years, collecting dust. I contemplated getting the Oxygen Company to come pick them up, since I was still having to pay for them!

Well, I'm glad that I did not because the Beast returned Friday June 26, 2020. After almost 4 years of remission, here he was again. Disappointment would be a huge understatement because I had never really gone more that 1-1.5 years in remission since I was first diagnosed back in 2007. I thought this D3 regimen would keep me pain free forever, but nothing lasts forever, right??

I get labs done every frequently by my PCP for other reasons, so 2 weeks ago I decided to look back over this years labs and see what my D3 levels have been each time they were drawn. This is what I found: On 3/12/2020 my Vitamin D was 79 ng/mL, on 5/20/20 it was 55.18 ng/mL and on 7/22/20 it was 61.58 ng/mL. Since I have been taking the same amount of D3 (same brand too) every day for years I started wondering, WFT happened between March 12 and May 20th to make my Vitamin D levels drop so much and then I remembered.....COVID happened! I was furloughed from work on Monday Mar 23rd (and still am to this day) and did not go outside my house but maybe 2 times a week for at least the first couple of months during quarantine! No sun....no natural D3! That's got to be the reason, right?!?! I think I read somewhere that the desired levels of Vitamin D3  is in the 60's but can't remember. I've restarted the regimen loading doses again (50,000iu per day for 12 days) to spike my D3 levels back up but I was wondering if anyone else had any experiences like this or input?

On a side note, I use to be able to abort the cycles completely my micro-dosing small amounts of those other things, when/if I could ever find any. I was able to find some of those a few weeks back but this time they have not helped one bit. Nothing.

Does anyone else find that with each new cycle, whenever they come, that some things that worked in the past no longer work? Does elements of the cycle change? I used to NEVER get them in the middle of the night.....now I get them almost every night this time. I used to never get more than one a day....now I've gotten more than 10X per day multiple times this go round.....fortunately, the oxygen worked every single time I used it....until yesterday.....when for the first time it did not. I got to the oxygen in plenty of enough time, but after 20 minutes if had not done anything to abort the attack. I feel like this thing has a mind of it's own and every time I discover a road block, it figures out a way to circumvent it!

 

What the heck......

Edited by SECAuthentics
wrong abbreviation

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Welcome SEC!!! Sorry you need us, but this it the place to talk and get help.

Yep. The beast morphs and surprises us with new torment. Just when we think that we have won, he goes 'bang' and then you are off to the races again.

The D3: Your levels are low! I had to keep my D3 at 10,000/day all summer due to excess heat and rain. No sun for me either. So, yes, upping it should help a good bit. I used to be able to drop to 5,000/day in summer with gardening, but not this year. Sounds like you got stuck in that boat. :( You would like your levels to be above 80 and I prefer 100. 

As for dosing, we can address that on a closed board - Theory & Implementation or Share Your Busting Stories. The micro bit does not have a good track record. 

Try grabbing an Energy Drink or Shot on your way to the O2. Slam it down fast and then huff. If you can't take those, cold coffee works too. It will help your O2 work better and faster. Hit the O2 at the first sign. I know, that is impossible when they wake you, but grab and go when you first wake. 

ATB!

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2 hours ago, SECAuthentics said:

I think I read somewhere that the desired levels of Vitamin D3  is in the 60's but can't remember.

Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL."

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13 hours ago, CHfather said:

Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL."

OK, so I really need to get it over 81.4 ng/mL! As I said, my labs were 79 ng/mL back in March but dropped to 55.18 ng/mL in June.....probably not a coincidence that the Beast returned within a month. I've been taking the 50,000 iu D3 vitamins for about 2 weeks.....we will see what happens and I'll update next month when I get my labs rechecked.

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Hey SECAuthentics,

All of us on the anti-inflammatory regimen experience burnthrough CH at one time or another.  The solution is simple.  If you haven't switched to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 now is a good time to do so.  You can order it from amazon or iherb.  In the mean time most CHers in your shoes, me included, have loaded vitamin D3 at 50,000 IU/day for a week then droped back to the usual maintenance dose.  When you switch to the Bio-Tech D3-50, one capsule a week is a good starting maintenance dose.

I updated the basic regimen in July of 2018 adding the Bio-Tech D3-50 in place of the oil-based liquid softgel vitamin D3 formulation.  In Jan of 2019, I added Methyl Folate + in place of the generic vitamin B 50/100 complex.  The following photo illustrates the latest version of this regimen by brand and dose.

e0ybTAP.jpg

CHers who stick with the above brands tend to experience a faster rate of response to this regimen.

Take care and please keep us posted.

V/R, Batch

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Hi Batch and Group - can a person just start out with 50,000 of  D3 per day for a week without knowing what current Serum levels are ?

I am suffering every half to every hour nightly. Currently the O2 will abort after about 4 minutes but I am up all night.

Thanks Dave

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hey @Cluster Dave 

I am no expert in the d3 regimen, but I have been on it for over a year now. I can say I immediately began the loading dose and following the regimen before I got my bloodwork done. I did make an appointment to get bloodwork done soon after though. It is very important. You must do the loading dose with the rest of the regimen. Other vitamins are essential in vitamin d actually absorbing in the body. Chances are, unless you are outside pretty frequently your  D levels are lower than what is needed to get relief for clusters.

kat

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Thanks Kat - went to the pharmacy today and they said to get the D3-50, I would need a prescription. So dead end for today. Going to be a tough night.

Dave

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 If needed, you can take several pills to get to the 50k you want. May not be the one recommended by Batch, but it will get you the D3.

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Thanks Spiny - Several being 50 since all I could find was 1000 IU on the shelf.

Not a quick solution for tonight.

Almotriptan did by me a few days of relief but last night like you said they didn't work and possibility caused rebound headaches, hard to tell since I was at that level of getting hit the same amount anyways. 

The only help my GP has given was to set me up with a neurologist that his only suggestion was botox with might or might not work.

Dave

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Hi Spiny was just reading about ergotamine tartrate

This medication is used to treat or prevent a certain type of headache (vascular headaches such as migraine headaches and cluster headaches). Ergotamine helps narrow widened blood vessels in the head, which reduces the throbbing effects of vascular headaches.

Have you heard of this med ?

Dave

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Can you get the d3-50 on Amazon? That is where I get mine 

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Thanks Kat - Amazon canada doesn't seem to have it, but I could probably get it off of Amazon.com but be pretty pricey that way.

I'm in the worst cycle I have had in about 30 years, I don't think D3 will be quick enough to help me.

Dave

 

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It is an old medication. And has fallen out of common use due to the potential side effects. In addition, I don' think that it can be taken with any Triptans. Most doctors do not prescribe it as other medications with a 'safer profile' have taken its' place. It also conflicts with other medications.

The D3 will take about a week and up to about three weeks to see the improvement. A few get immediate relief when they begin taking the vitamins. It is healthy and good for you. Its' biggest claim to fame is eliminating Ch completely for some and lowering the intensity of the hits and slowing the ramp up for others. Keeping them at a lower level of pain is a benefit always! And slowing the ramp up allows you more time to get started on your O2. I suggest getting the lower dosage pills and taking 10k to 15k a day till the 50 arrives. That way you can get started on the entire regimen ASAP. The benefits are surprising for many. Also, 5k and 10k D3 pills are usually all over the net to purchase. If you can't get the specific one recommended by Batch, I'm sure he would tell you to take another D3 to get it in your system. The one he recommends is the 'best' in his book. If you cannot get it, then take a different one. Just take it and the co-factors!!! 

If your doctor will do it, get a D3 blood test to see what your levels are currently. He might just prescribe the big one for you! In the US, we can order the blood test ourselves. Not sure about Canadian policy is regarding that bit. But, it would be good for him to know that you are deficient. 

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If you are Canadian, you are likely deficient, most times it is hard to get a D bloodtest here, but can disguise the request in a kidney function test iirc, that's what had to happen for me. As to ergotamine, I myself had a DHE infusion regimen, couple days in hospital for iv then home injections for a couple of weeks (Di-hydro-ergotamine) for me, it did affect them, but more 'scrambled' them a bit, affected duration, timing and to some degree intensity, one of the major side effects I had with it was a feeling/sense of euphoria or happiness/optimism, some injection site pain and irritation. I hope the regimen works for you, sadly I am one of those it showed nothing for me save some body aches got a bit better. 

If you are anywhere near or able to get to Calgary, in the south health campus there is a dedicated department for headache disorders, staffed by several neurologists specializing in headache disorders.

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@Cluster Dave damn I’m sorry to hear that. Anything that could have possibly made them so tough for you this time around? The d3 does make a difference. But you need to be consistent with it. Any progress is good progress 

kat

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6 hours ago, spiny said:

It is an old medication. And has fallen out of common use due to the potential side effects. In addition, I don' think that it can be taken with any Triptans. Most doctors do not prescribe it as other medications with a 'safer profile' have taken its' place. It also conflicts with other medications.

The D3 will take about a week and up to about three weeks to see the improvement. A few get immediate relief when they begin taking the vitamins. It is healthy and good for you. Its' biggest claim to fame is eliminating Ch completely for some and lowering the intensity of the hits and slowing the ramp up for others. Keeping them at a lower level of pain is a benefit always! And slowing the ramp up allows you more time to get started on your O2. I suggest getting the lower dosage pills and taking 10k to 15k a day till the 50 arrives. That way you can get started on the entire regimen ASAP. The benefits are surprising for many. Also, 5k and 10k D3 pills are usually all over the net to purchase. If you can't get the specific one recommended by Batch, I'm sure he would tell you to take another D3 to get it in your system. The one he recommends is the 'best' in his book. If you cannot get it, then take a different one. Just take it and the co-factors!!! 

If your doctor will do it, get a D3 blood test to see what your levels are currently. He might just prescribe the big one for you! In the US, we can order the blood test ourselves. Not sure about Canadian policy is regarding that bit. But, it would be good for him to know that you are deficient. 

Thanks Spiny - I read further on that med and found the same that it was an old medication. I guess I was just hopeful because I didn't recognize the name.

I will pick up some D3 from a different pharmacy today. And look for the other vitamins to go with it.

Off the scale pain last night, on O2 every half hour. Options at that point were ER or steroids. Considering what the ER would do for me after hours of waiting they would probably give me steroids so I took a 50 mg prednisone and that helped get me through the night with O2.

O2 every couple hours so better.

Called physician today he suggested another round of prednisone which I don't want. Told him rather try Imitrex than that, he agreed if it helps. Steroids to be last option.

He also said follow up with Neurologist and think about Botox which the Neurologist is pushing.

I told him there is no medical proof Botox will help with clusters, your thoughts ?

Thanks Dave

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4 hours ago, devonrex said:

If you are Canadian, you are likely deficient, most times it is hard to get a D bloodtest here, but can disguise the request in a kidney function test iirc, that's what had to happen for me. As to ergotamine, I myself had a DHE infusion regimen, couple days in hospital for iv then home injections for a couple of weeks (Di-hydro-ergotamine) for me, it did affect them, but more 'scrambled' them a bit, affected duration, timing and to some degree intensity, one of the major side effects I had with it was a feeling/sense of euphoria or happiness/optimism, some injection site pain and irritation. I hope the regimen works for you, sadly I am one of those it showed nothing for me save some body aches got a bit better. 

If you are anywhere near or able to get to Calgary, in the south health campus there is a dedicated department for headache disorders, staffed by several neurologists specializing in headache disorders.

Thanks DevonRex

Spoke to a physician this morning, he said I can go to a lab and pay myself to have the blood work done for Serum level. 

I live in BC actually on Vancouver Island so Calgary is a ways away from me.

Going to try ramping up on the D3 with O2 support and Imatrex when hits are out of control also have steroids as a final resort instead of ER.

Appreciate your information, starting month 4 on this cycle which is a record for me so hopefully this will end soon or at least calm down enough where I can get 5 days med free and try mm's again.

Thanks Dave 

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4 hours ago, kat_92 said:

@Cluster Dave damn I’m sorry to hear that. Anything that could have possibly made them so tough for you this time around? The d3 does make a difference. But you need to be consistent with it. Any progress is good progress 

kat

Thanks Kat - still have not been able to pin down why this cycle is so different than the others. 

I had my usual cycle in February which I used mm's to deal with. Mm's did the job, didn't abort the cycle, never does for me but made the attacks less frequent and less painful and manageable. Cycle lasted usual month and a half.

The unusual part was to get hit again with another cycle about a month and a half later. Didn't expect another one for at least 8 months. And this one is the killer cycle. No idea why this one showed up or what triggered it or why its the worst one yet, but the mm's seemed to be no match for this one.

Thanks Dave

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@Cluster Dave Hmm that’s odd. Maybe the MM gave you a month and a half reprieve. Any luck with mm this time around? I believe I am chronic and the mm are keeping the hits or shadows very manageable for me which is good news!! 

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Botox: Some people find it helpful, others do not. Type Botox into the search bar and you can see what members who have tried it have to say about the effectiveness. 

Happy that you are getting on the D3 Regimen ASAP. :)  Yes, you are taking several D3's when your are loading, but that intake does get reduced, so the fistful is not forever! 

Remember that you can still bust while taking Verap! A dose of 320 or less has been found not to interfere in most cases. So, you might try them again even if you are on Verapamil.

 

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Thanks Spiny - last night tried Imitrex nasal spray. Each one (Max 2 ) only bought me maybe 2 hours of relief then back to hits and O2 every half hour.

Last option picked up a weeks worth of Prednisone 50mg tablets.

Verapamil- I have never taken but have heard lots about it on hear, maybe I should be ramping up on that while I am doing the one week Prednisone, your thoughts ?

Started D3 regime yesterday got as close to what Batch has suggested only missing the K2.

Thanks Dave

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12 hours ago, kat_92 said:

@Cluster Dave Hmm that’s odd. Maybe the MM gave you a month and a half reprieve. Any luck with mm this time around? I believe I am chronic and the mm are keeping the hits or shadows very manageable for me which is good news!! 

No this time around for what I am calling the killer cycle the mm's did nothing, managed to get a couple 2.5g doses in and no difference. Hits coming every half hour all night like re-bound or slap back headaches that never end.

Never had that before continuously.

Thanks Dave 

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Posted (edited)

Verapamil can help some. I was at one point taking a little over 900 mg a day with the slow release. I made the change over to the rapid release and worked my way down to 120 twice a day. You will want to have a doc keep an eye on your heart when changing dose and work up slowly. It will take about a week to get into your system so most will do a pred taper for the first week. When I was on the higher dose it effected the feeling in my feet along with a little swelling. If you are also using the D3 with all co factors you will want to space them apart a few hours, Verap is a calcium channel blocker so they would be fighting each other. They both work fine along with the triptans also. 

Edited by FunTimes
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