Question about D3 + other

[Cluster Dave]

Hi Spiny

Glad to hear that the D3 regime is working for you as well as your other precautions.

I am on day 6 of the regime hopefully it kicks in soon as I am still suffering. 

In the last 5 years MM's have helped me tremendously even though looking back 5 years ago and 2 years ago there is a cycle that comes up that nothing seems to help. 

Like the one I am in now which is the worst I have ever experienced and the longest lasting as well.

Hopefully the D3 regime can help on this cycle. Still taking Almotriptan otherwise it would be one hit after another all night long. 

Thanks Dave

[spiny]

Are you trying Melatonin or Benadryl at night? I would add the Benadryl - 2 at bedtime. If they don't make you too sleepy, you can take one at a time during the day. Read the bottle.

I do not suggest you add both at the same time. Your balance may be wonky and be an issue getting around during the night. So, perhaps try adding the Benadryl first.

ATB!

[devonrex]

Lucky me, chronic refractory. Have not had a full 24 hour pain free day in 3 years. The only saving grace is '10' attacks come only a couple times a week. 

[Cluster Dave]

7 hours ago, spiny said:

Are you trying Melatonin or Benadryl at night? I would add the Benadryl - 2 at bedtime. If they don't make you too sleepy, you can take one at a time during the day. Read the bottle.

I do not suggest you add both at the same time. Your balance may be wonky and be an issue getting around during the night. So, perhaps try adding the Benadryl first.

ATB!

I have added Benadryl about 10 times here and there but I have yet to notice any difference. 

Thanks Dave

[Cluster Dave]

4 hours ago, devonrex said:

Lucky me, chronic refractory. Have not had a full 24 hour pain free day in 3 years. The only saving grace is '10' attacks come only a couple times a week. 

Wow sorry to hear that, do the MM's help with the pain level and O2 take care of the rest ?

Dave

[SECAuthentics]

On 8/21/2020 at 4:16 PM, xxx said:

For what it's worth, here's the logic and science behind the 12-Day accelerated vitamin D3 loading schedule and why the initial target 25(OH)D3 serum concentration is 80 ng/mL.

1. From the online survey data of 313 CHers who have reported their results after starting this regimen since Dec 2011,  we have the normal distribution chart of baseline 25(OH)D3 lab results before starting this regimen and normal distribution chart of the objective (Favorable CH Response) 25(OH)D3 labs after ≥30 days on this regimen.

As you can see, CHers reporting in this survey with active CH, went from a mean 25(OH)D3 serum concentration of 24 ng/mL before starting the anti-inflammatory regimen to a mean of 80 ng/mL after ≥ 30 days on this regimen with a significant reduction in the frequency of thier CH.  The following chart illustrates the notional change in serum 25(OH)D3 made possible by starting this regimen with the 12-Day accelerated vitamin D3 loading schedule.

Data from the online survey confirms the above notional response.  As you can see, if the CHer took only 10,000 IU/day vitamin D3 and no loading, it could take well over 2 months to reach a mean 25(OH)D3 serum concentration of 80 ng/mL.

The following charts illustrate the favorable CH response to this regimen by day after starting it.  The first chart illustrates favorable responses by day after starting this regimen.  I  used a favorable response as at least a 50% reduction in CH frequency by at least 70% of participants.  Data from the survey indicate the mean reduction in CH frequency is 80% by 82% of participants.

This second cart illustrates days after start of regimen to a sustained complete cessation of CH symptoms.

Survey data collected during 2019 indicate the favorable response rate increased with over 90% of CHers reporting a favorable response.  I attribute most of this increase in the response rate to the switch to Bio-Tech D3-50.

2. Why is the initial 25(OH)D3 serum concentration target set at 80 ng/mL?  This is where a little statistics and what's called the confidence interval comes into play.  In statistics, a confidence interval is a type of interval estimate, computed from the statistics of the observed data, that might contain the true value of an unknown population parameter.  Data in the following chart comes from the D* Action database at Grassrootshealth.  It represents the results of 25(OH)D3 lab tests from over 10,000 people who take the 25(OH)D3 home blood spot test for their serum 25(OH)D3 every six months reporting their vitamin D3 dose over the six months prior to this lab test. As you can see, the mean 25(OH)D3 response to various vitamin D3 doses is represented by the blue lines and that at a dose of 10,000 IU/day, the mean 25(OH)D3 response is 76 ng/mL.  The red lines represent the 95% confidence interval.  In simple terms we can say that the results a given lab test for 25(OH)D3 at a dose of 10,000 IU/day will fall between these two red lines with 95% confidence.  The green dashed lines represent 25(OH)D3 serum concentrations at 40 ng/mL, 30 ng/mL and 20 ng/mL.  Accordingly we can say that at a dose of 10,000 IU/day the confidence interval for 25(OH)D3 response lies between 42 ng/mL and 118 ng/mL with 95% confidence. 

If you go back to the second chart illustrating the normal distribution of 25(OH)D3 results among CHers responding to this regimen with a significant reduction in the frequency of their CH, you can see this same confidence interval falls under the normal distribution curve.  For practical purposes, this is also the effective therapeutic range of serum 25(OH)D3 (40 ng/mL to 120 ng/mL) for favorable responses.   You can also see where a lower vitamin D3 dose of 5,000 IU/day results in a confidence interval between 25 ng/mL and 90 ng/mL.  In this case a significant number of CHers would not respond to this regimen.

As an "Oh by the way..."  the following charts from two different COVID-19 studies indicate taking 10,000 IU/day and keeping your 25(OH)D3 serum concentration over 40 ng/mL is a pretty good idea...  This isn't rocket science and you don't need to be a physician to understand the importance of this information.

Hope this helps explain a little more about the anti-inflammatory regimen treatment protocol.

Take care,

V/R, Batch

This is good stuff!

[devonrex]

On 8/25/2020 at 8:24 PM, Cluster Dave said:

Wow sorry to hear that, do the MM's help with the pain level and O2 take care of the rest ?

Dave

Have not done mm yet, exhausting/exhausted most legal options, reluctant to try something with jailtime attached and being honest with myself, kind of scared if they do not work kind of ends my saving it as a last resort to have before the end of my rope. O2 will take the edge off, combined with monster energy and occasionally opiates, will trim a screaming 10 to a pacing/rocking 9 or on a good day an 8. I do not suggest opiates as a first or even secondline medication, just when you get to a point nothing has done anything, something that does a little bit to take the edge off is a godsend.

[Cluster Dave]

Here in Canada if I was caught with MM's would probably be a small fine and if a judge knew why I was taking them would probably be the smallest fine he could give, so not to concerned about that aspect of taking them.

They work well for me on most cycles but once in a while a cycle comes along like the one I am in now and they don't work at all for me. So now I am going around in circles with prednisone and Almotriptan both of which are short term fixes which are not good.

Still looking for another option, I started the D3 regime a week ago but so far has not helped.

Have you tried the D3 regime ?

Thanks Dave

[devonrex]

I did try it, it helped my joint pain and such but didn't touch my attacks. I am just day by day. Melatonin has helped a bit with getting some sleep.

[kate]

Good afternoon all. 
I have been reading about the D3 regime. Simply put, what do I buy and how much do I take? How often and for how long please?

Im in England. TIA, Kate

[Cluster Dave]

Hi Kate - here is a good starting point. Take daily.

https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

Dave

[kate]

Thanks Dave. All still looks complicated. I’ll order what is in the photo in the link and go from there.

[Cluster Dave]

If you want to send an email address there is a hide button. I can send you a photo of what I bought. Batch has reviewed what I have been taking.

Dave

[IceCr4cKeR]

I suggest try taking Iodine & Vitamin K with the d3 regimen... Vitamin K helps push Calcium into the bones . while Iodine helps the Thyroid function, there's a bit of search done on Thyroid and headages. Iodine & K can lightly supplement decreasing Calcium levels in the blood 

https://www.thyroidcentral.com/hypothyroidism-and-migraines/ (or google  Thyroid headages.) 

Thornes Vitamin k2 has 15mg = 12,500% per 15 drops ( 1 serving) a bit pricy. , over the last year after I started taking Iodine with K during my d3 regimen, there's been a meaningful decrease in episodes and and pretty much the god dam pain has plummeted from 7-9 to 3... This could be due to other factors, but still worth a shot. 

****** Highly suggest you guys read ****

https://www.medhelp.org/posts/Thyroid-Disorders/Cluster-Headaches-and-Hypothyroidism/show/1698010 **** 

https://pubmed.ncbi.nlm.nih.gov/31310335/  (Relationship of Migraine and Tension-Type Headache With Hypothyroidism: A Literature Review) 

-----------------------

Iodine -  /////// LE's D,K & Iodine   ///// Thornes Vitamin K2 15mg Liquid

[trjonas]

On 8/29/2020 at 10:22 AM, devonrex said:

I did try it, it helped my joint pain and such but didn't touch my attacks. I am just day by day. Melatonin has helped a bit with getting some sleep.

@devonrex I read that taking melatonin can interfere with D3 healing. (In this book: https://smile.amazon.com/gp/product/1491243821/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1&asin=1491243821&revisionId=&format=4&depth= "Taking melatonin and D3 together might actually counteract the healing properties of D3 taken alone.") Maybe that's why it hasn't been fully effective for you? I stopped taking melatonin when I read this.

[trjonas]

On 9/15/2020 at 7:08 AM, IceCr4cKeR said:

I suggest try taking Iodine & Vitamin K with the d3 regimen... Vitamin K helps push Calcium into the bones . while Iodine helps the Thyroid function, there's a bit of search done on Thyroid and headages. Iodine & K can lightly supplement decreasing Calcium levels in the blood 

https://www.thyroidcentral.com/hypothyroidism-and-migraines/ (or google  Thyroid headages.) 

Thornes Vitamin k2 has 15mg = 12,500% per 15 drops ( 1 serving) a bit pricy. , over the last year after I started taking Iodine with K during my d3 regimen, there's been a meaningful decrease in episodes and and pretty much the god dam pain has plummeted from 7-9 to 3... This could be due to other factors, but still worth a shot. 

****** Highly suggest you guys read ****

https://www.medhelp.org/posts/Thyroid-Disorders/Cluster-Headaches-and-Hypothyroidism/show/1698010 **** 

https://pubmed.ncbi.nlm.nih.gov/31310335/  (Relationship of Migraine and Tension-Type Headache With Hypothyroidism: A Literature Review) 

-----------------------

Iodine -  /////// LE's D,K & Iodine   ///// Thornes Vitamin K2 15mg Liquid

I love this! @IceCr4cKeR what dose of iodine do you take? I've been taking one capsule of this daily for months because the ER found my blood levels were inexplicably low in sodium and advised me to increase salt in any way I could. That was the only abnormal thing they could find with me. My sodium levels are normal now; I've been taking the iodine daily to maintain that. I wonder if taking more would help me reduce my HC/CCH.